Complementary and Alternative Medications Archives

DISCUSSION: Comp. and Alternative Medications - Active Discussions Archive  2008-04-18 10:53:30   2008-04-18 10:53:30

RESPONSES:

Response (1.)...  by dad-wi - 2008-03-10 16:59:54

Hi drisme,

That was my approach. This was an explanation I got from our DAN dr's office when I was looking:

""Bipolar disorder is from methylation issues with neurotransmitters and specific areas of the brain not functioning, complicated by immune and DIET and nutritional problems."

This explanation is, in a nutshell, the direction Dr. Hicks will take with your son. Testing will focus on neurotransmitters, detoxification, immune status, digestion and absorption, and cellular energy. Treatment is then customized to test results, including dietary modifications, supplementation, and vibrational (homeopathic) remedies. 

As far as success is concerned; all of our patients make positive progress. The degree of success is directly correlated with compliance and PMA (positive mental attitude)!"

 

I think the issue that you are wrestling with is one of treatment philosophies. A pdoc's tools are generally meds targeting and manipulating neurotransmitter imbalances; an integrative or holistic practitioner is going to look at the same neurotransmitter variances, and use supplements to correct or modify problems that are interfering with the neurotransmitter metabolism, and ultimately resolve the neurotransmitter imbalances. It's taking an upstream approach at making things clearer downstream. Martha Herbert, a Harvard Phd specializing in working with autism described the brain as a 'downstream organ' because it depends on so many other systems to supply and feed it, so it can do it's job. Because the brain consumes so much, it seems to follow it will fail at executive functions if it's supply is cut short. Those deficiencies can come from many different issues, as he described he would look at.

 

After working with pdocs for 5 years, I started with our DAN. If you accept the nutrient philosophy, it follows that as things get nurtured, and there are sufficient neurotransmitters available, the need for meds may be diminished or eliminated. In my son, as we titrated up on supps, we found we had to lower meds when symptoms got worse. Over the past two years, we've removed his 5 med combo and have been using supps and diet only for 9 months. 

 

Darryl

Parent volunteer

dad to Levi, 9 using biomed 

 

I know your son is older, but you may want to read this to get an intro into 'biomed' 

http://www.thoughtfulhouse.org/exploring-the-biomedical-issues-of-autism...

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Response (2.)...  by jistac - 2008-03-10 22:32:37

drisme,

I hear your confusion about how to proceed.  It is very confusing indeed partly because the actual hard core science supporting nutritional interventions as possible treatments for mental health problems is both very good and very poor.  What we know based on numerous studies with a wide variety of populations as well as animal studies, is that nutrition can have a huge impact on how the brain functions and mental health, specifically mood and rage issues.

 

What we don't know is what the ideal nutrients are to give any one person, how much they need, whether certain nutrients given over time can have a negative or positive effect, what nutrients need other nutrients to be processed by the body, etc etc.....  We have bits and pieces of the story but we definitely don't have the whole story.  We don't even know how to tell if somebody has a deficiency in a certain nutrient, because we can only measure the quantity of nutrients in blood but that does not tell us whether those same nutrients are making it to nerve cells or to cells in the brain.  My own daughter had a zinc deficiency from a vegan diet but her blood indicated that her zinc levels were fine.  Nevertheless we knew she had this deficiency because her hair was falling out and she was eating a lot of soy protein isolate which interferes with zinc absorption.

 

Most of the doctors working with these types of treatment are using a combination of experience mixed with bits and pieces of scientific knowledge and data to form a treatment plan.  The best doctor for your son is somebody who has seen a lot of kids who are like him and who present with similar symptoms to his.  One thing that the folks at Truehope have going for them is that they have collected data on thousands of Bipolar individuals who are using their formula.  And their formula is based on a formula developed through trial and error on farm animals over many many years.  

 

Going with an alternative nutrient based approach requires a leap of faith.  Technically using medications/pharmaceuticals should also require a leap of faith, because faith in technology and the medical establishment is so strong in our culture that most people believe that they are getting a tested scientifically proven treatment when they give their child a prescription pill.  When in fact much of the same trial and error that goes into creating a formula like the Empower formula is used with pharmaceuticals as well.

 

Good Luck

We are here for you what ever path you choose.  

Jistac

CAM Board Moderator

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Response (3.)...  by jistac - 2008-03-12 21:17:47

Is your pdoc working with Truehope and knowledgeable about Empower?  I assume he is otherwise you would not of been using it for so long.  I am curious why he is not open to trying a lower dose of Lamictal?  It seems to me that everyone reacts differently to meds and although extreme exhaustion might not be a side effect of Lamictal for many people it could potentially be your daughter's unique reaction. 

 

Ambien is probably a bad idea because it will interact with the EMP and potentially destabilize your daughter. 

 

Has she had her thyroid tested?  The extreme exhaustion sounds very much like how thyroid problems presented in my kids.

 

Does she drink Caffeine or caffeinated drinks?

 

Maybe her EMP dose is too high or not high enough.  Have you talked to anyone at Truehope about this?

 

I hope you find some answers soon.

Good Luck

Jistac

CAM Board Moderator

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Response (4.)...  by trehouse@optonline.net - 2008-03-13 13:53:13

is also a common sign of depression. I'm not offering suggestions about what your child may need to take or not take, just a reminder that the fatigue may indicate some depression. You and your care providers can look at other symptoms and decide what the treatment options are.

 

Sam

Max, 6, lamictal/invega

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Response (5.)...  by elialex - 2008-03-13 21:15:34

It is worth noting that Lamictal is not, as far as I know, FDA approved for use in children to treat BP disorder.  Thus, if the pdoc argues that Empower does not have any scientific (read double blind placebo controlled) studies to back up its use, the same can be said for using Lamictal to treat children for BP.  The pdoc violates his own stated standards by prescribing this med for your daughter.

 

Please do not think I am saying that Lamictal is dangerous - our son used it and as far as pmeds, go it was one of the more benign. There is likely published evidence that suggests that Lamicatal is helpful to kids with BP and I'm sure the pdoc has seen kids in his/her practice who have benefited.  And you have seen your daughters benefit from Empower.  But in neither case is there sufficient evidence to win FDA approval at this time.  My point is that this is a political argument the pdoc is making as much as a scientific one.  

 

As for helping your daughter I have to agree with all the others here that the place to start is by lowering the Lamictal dosage.  It is certainly not unheard of for kids to use pmeds in combination with empower.  However, every other case I have read about has involved a lower than typical dose of the medication, often a dosage that would be considered sub-therapeutic by any typical standard.  A number of parents who post here and at the Truehope board use what would be considered a microdose of Risperdal or Lithium (drugs that are FDA approved to treat BP in kids) in combo with Empower.  

 

Perhaps consider dropping the lamicatal dose by 50 MG, which is a 17% reduction.  Wait a few days and see what happens. 

 

Another place to look for ideas is a TH document that lists limiting factors that affect the efficacy of Empower.  You may need to ask for a copy. Take a look at the list and see which apply to your daughters situation.  Perhaps this will lead to some more ideas.

 

Best of luck to you and your family!

 

Cliff

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Response (5.1.)...  by blueyeliz@hotmail.com - 2008-03-24 01:06:58

Hi Rebecca - good to see you are still hanging around the boards.  I know you mentioned pulling back a bit, but you always have good thoughts to share.

The choline is actually down from 2000mg about a month ago, and I'm in the process of bumping him back up a tad, thinking maybe I went too low.  

The salmon oil, you are right, is quite high.  As is often the case, we did a LOT of add-ons during the difficult pmeds to EMP transition, and we had to deal with Abilify withdrawal which is notorious of course.  The 4-8 weeks after abilify were awful.  I think slowly backing off the salmon oil is a good idea at this point.

Liz

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Response (6.)...  by stephanie - 2008-03-14 11:23:47

I guess I would look for a new pdoc if the one I was going to was not supporting the form of treatment I wanted to use.  That's just my opinion, of course.

 

We worried that our son's pdoc would not take EMPower seriously, and we were happily surprised when he seemed not only interested, but pleased with Robby's progress.  I'm sure your daughter could find another doc who would be supportive of her efforts.

 

Good luck!

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Response (6.1.)...  by blueyeliz@hotmail.com - 2008-03-24 01:13:22

Thanks Jistac.  I always find your replies to be very helpful on this board.

Of course, your post is both discouraging and hopeful.  Since my son isn't even 11 yet, I have quite a few years that will likely be very challenging as he grows, develops, and gets bathed in testosterone...which he's seemed to have an overdose of from day one (he's one of those ALL BOY, unlike my older son who is much less aggressive).

But that said, it's good to hear reassurance that someone has made it to the other side and not just survived - but is thriving.  I soooo need that hope.

Your post also, though, points out to me that I really don't have a medical doctor on board.  DS had a pdoc, and he is aware of what I'm doing with EMP (in fact he is still treating my older son with traditional pmeds...for now), but I wouldn't say he is "on board" - as in he's not really there to support issues.  So I guess I would be in a better position if I could find someone.  Sigh. The big names (like Popper) all seem to be east coast or cali, and I'm up in the corner of the US in the Pacific NW.  

Thanks again for the reply, it does help.

Liz

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Response (6.1.1.)...  by  - 2008-03-28 18:02:45

Hi Naomi,

 

Can you elaborate a bit more about the endocrine issues?  I'm interested in looking into this, but need a bit of direction as I am sure this line of pursuit is not common in my area.  Daughter has TSH > 1, and highish/out of wack cortisol, and lord knows what estrogen etc. issues.  As daughter's panic and mood issues went into high gear at puberty I'm sure hormones play a big role in her bp symptoms but no one has expressed any real interest in investigating that end of things.

 

Thanks for whatever info you can point me to.

 

Rebecca

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Response (7.)...  by naominjw - 2008-03-15 18:15:36

She lowered the Lamictal 3 days ago by less than 10%. (Actually by just 25mg -- 300mg down to 275mg). So, this is the 2nd full day, really, on the lower dose and she IS less fatigued. A little less, but noticeably less, fatigued. She says thank you from her as well. I know this is just day 2 of feeling better, but it is small but significant and that's the only change. I'll update more later. 

 

She says that if THIS was the reason for all her severe, bone-wrenching fatigue for MONTHS because the pdoc said no way was it the Lamictal, she is going to be ... um... disgruntled (not her actual word choice). I just laughed. At least she is feeling better now. She wants to lower it by another 25mg in another few days, then stay at that level for a couple weeks before lowering it more just to make sure she does not become unstable. She wants to go faster because she has gotten a glimpse of feeling better, but I told her to have patience. Better, in my opinion, to have this side-effect than to be unstable. She agreed. 

 

Thanks again. I'll update all in a couple weeks no matter which way it goes - better or worse.

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Response (7.1.)...  by  - 2008-03-24 11:58:44

Hi again Liz -

 

I remember you were looking for a DAN dr or naturopath last Dec. or so - did you ever find one?

 

I ask because I did manage to track one down and, although there has been a two way learning curve, he has identified some issues that the EMP did not address, a bit more in the Dad WI method, and she is doing pretty well with this.  I think the EMP alone could not address the heavy metal, food sensitivities and adrenal issues - and there are more things coming up on the testing agenda as each is dealt with in turn.

 

Just a thought.

 

Rebecca

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Response (7.1.1.)...  by  - 2008-03-28 20:17:50

make that TSH less than 1, I got my arrows mixed up!

 

R

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Response (7.2.)...  by jistac - 2008-03-24 22:49:55

Liz, 

We briefly were contemplating having to move back to Seattle.  That was 3 years ago and I was besides myself.  For one I really did not want to leave the East Coast and return to the rainy NW.  But I also didn't know what we would do about a pdoc.  I believe Popper told us at the time that he had somebody out there that he would/could refer us to.  

 

Fortunately we didn't end up having to move and my DH telecommutes to his job in Seattle.

 

I will try to remember to ask the next time I see him if he has the name of somebody out there.

 

Jistac

CAM Board Moderator

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Response (7.2.1.)...  by zbarbuff@vcn.com - 2008-04-01 16:56:21

Hi Ryan! We have started with EMP but we're not dealing with medication probs because the members of my family that are using it were not on medications previously. My suggestion would be to call support at true hope. I have found them to be very helpful and that's why they are there. To help with these questions. The number is right in front of me...1-888-878-3467.

Good luck,

Terri

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Response (7.2.1.1.)...  by nancyo - 2008-03-13 11:12:15

Can you tell me how many Empower your daughter is taking and what her Lamictal dose is?  The reason I ask is that my son is taking a low dose of Empower (3 per day) and is slowing increasing Lamictal because we were not able to get rid of his depression on Empower and other supplements alone.  

 

For what it's worth during my son's Pmed (Lamictal + Abilify + Focalin + Lexapro) reductions he became very tired - sleeping well past noon.  TH advised to do a pmed reduction and he improved quickly.  Course, I don't know which pmed caused the tiredness.  You could always cut Lamictal for a few days - week.  If it is an interaction your daughter should see an improvement quickly.

 

Nancy

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Response (8.)...  by  - 2008-03-23 19:47:30

I don't think I have any particular answers, and am sure you have been through the up and downs of changing EMP doses. For what it's worth, I suspect choline contributed to my own daughters instability when she was on EMP,  and wonder if you have tried lowering the dose. The amount of salmon/high EPA oils also strike me as possible contributors - that is a high dose of salmon oil IMO, and if high EPA is added on top of that,problems could arise.

 

You know what the history is, I don't, but my suggestion would be to try easing back on add-ons, one at a time, to see what happens, starting with choline, then fish oils.

 

Best,

 

Rebecca

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Response (8.1.)...  by tklyon@aol.com - 2008-03-24 22:27:42

My son did well on 1.25 mg of lithium for about 2 weeks, eventually had a toxic reaction to that, and has been off lithium for the second time now since December (the first time he was off, he was off 13 months_. It's hard to believe that such a low dose would create such a toxic reaction, but it did. 

 

Add microdoses carefully. Our whole fall was chasing stability with lithium microdoses, and it all was fleeting--EMPower and lithium clearly competed too much with each other. My son is doing better off lithium. Microdoses do not benefit everyone, and adding a microdose should be done with everything else being stable, so you can know the changes.

 

Tally

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Response (9.)...  by jistac - 2008-03-23 21:53:40

Hi Liz,

I hope our story helps.  5 years ago we felt like pioneers when we made the decision to work with Dr Popper and treat our son using EMP.  But we felt like we had no choice because pmeds seemed to be a disaster for our son.  And like you we initially saw remarkable changes.  Changes that we never saw with any of the meds that we tried.  But like you nothing seemed to last.  We seemed to bounce from one crisis to another and I feared that I might never be able to delete our son's doctors pager numbers from my cell phone.  There were many times when I came close to giving up on the EMP.  What kept me going was the same thought you are having, "Things would not necessarily be any different with pmeds."  And Dr Popper would confirm that this was indeed correct.  Having treated bipolar children for over 30 years he told us that during the years of rapid growth one is almost always playing catch-up.  He told us that in his experience using the vitamins clinically, the catch up with EMP seemed to be less dramatic and there were some kids who over time seemed to just stabilize on the vitamins and not need so much tweaking.  He never gave us any promises that our son would stabilize on the vitamins.  Nor did he minimize what we were going through.  He did however remind me that when we first started working with him he told us that these years (between 12 and 17) would be difficult regardless of what treatment course we chose.  And I suppose it was that reminder that kept me staying the course with the EMP rather than giving up and returning to meds.  

 

Liz, it has been a hell of a ride.  There were periods when I felt like I was always clutching a phone waiting for the doctor to return one of my pages.  We tweaked, we adjusted.  Our son struggled in school.  His struggles triggered his BP and made things worse.  We adjusted some more.  

 

I am not sure when things started to settle down exactly.  But some time this fall our son started to morph into a young man.  We stopped responding to crises and started being able to fine tune and tweak his meds.  We stopped living in perpetual fear of a rage and started to focus on helping him to grow up and develop as a person.  Therapy played a huge role in our being able to achieve this.  But I also think it helped that his body stopped growing so rapidly and his metabolism stopped constantly shifting.  And maturity also has played a role.  

 

Now if you have read other posts of mine you are aware that I have an older daughter who developed adult-onset BP her senior year of HS.  Initially before she was even dx as BP we tried to get her to take the vitamins to help her with what we thought was PMS.  She took them sporadically but enough so they must of kept the BP somewhat dampened.  But in January of her Freshman year in college she decided to stop taking the vitamins and she had a classic BP cycle two weeks after stopping taking them because she felt they were not doing her any good.  Our pdoc gave her a choice...work to tweak the vitamins to deal with the symptoms she was complaining of before stopping the vitamins or use traditional pmeds.  She chose to use traditional pmeds.  She wanted things simple.  It was her choice.  But even with traditional meds it took almost 9 months (as a young adult) to get her dosings right and for her to be stable.  

 

I hope that helps you with your doubts and struggles now.  I wish I could say that it will get easier sooner rather than later.  But hopefully with time things will indeed settle down.  But it may not occur within months.  It might be years instead before you see real solid stability.

 

Jistac

Cam Board Moderator

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Response (10.)...  by triplelatte - 2008-03-24 14:32:07

Anyone have experience using acupuncture to treat bipolar either in part or as a whole?

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Response (10.1.)...  by jistac - 2008-03-28 22:23:18

Rebecca has she ever had her calcium and parathyroid hormone tested.

 

Parathyroid problems have definitely been linked to mood disorders.

 

Also has she ever been tested or evaluated for polycystic ovarian disease.  This also presents with symptoms similar to BP

 

Jistac

CAM Board Moderator

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Response (10.1.1.)...  by  - 2008-04-03 20:37:21

Hi Terri,

 

The amount of Vit A that a full loading dose of EMP (just over, at 16 capsules a day) would give is 6,144 IU, which is below the recommended upper limit of 10,000 IU

 

http://dietary-supplements.info.nih.gov/factsheets/vitamina.asp#h9

 

(this is from a government website, so should be completely ok with the County Dr.)

 

It could be that the county Dr. is mixing up IU (micro grams) and g (grams).

 

My own daughter's EX dr. had the same ignorance based concerns, got her all upset, and had her blood tested and all was completely normal.

 

Does your son have his own Dr. that you can talk to and get his ok for the EMP?

 

Good luck,

 

Rebecca

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Response (11.)...  by triplelatte - 2008-03-24 14:32:07

I just found a few older posts on the issue - about the possibility of it activating symptoms in children. So...I will not be going that route:)

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Response (11.1.)...  by  - 2008-03-28 23:05:23

Jistac,

 

I doubt it.  She is MD resistant now ; )

 

I'm trying to get an idea of what even to look for, or what comprehensive test panel we should be seeking for her.  The pdoc is not looking in this direction at all; I doubt she has POD as she is not overweight, or hirsute, and has low blood pressure. Pdoc isn't looking at thyroid now at all, as TSH is so low, but still, I think the whole system should be looked into, if only to rule this kind of thing out (and since cortisol is out of wack, something is amiss).

 

Typical calcium levels have likely been tested, these kind of things things always come back in normal range; parathyroid - I'm sure not. I get copies now, didn't in past, too trusting...

 

Gosh, we should work up a comprehensive test sheet (and labs that do the tests if they are CAM, not normal MD stuff) ourselves and put it next to the 2005 treatment guidelines, I know this idea is not new...But in our experience, if you don't ask you don't get, but if you don't know what to ask for - Catch 22..

 

Rebecca

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Response (12.)...  by stephanie - 2008-03-24 14:38:45

My son Robby is 11 and has been on EMPower plus for two months.  He initially responded beautifully, and still is much better overall, but we do occasionally see a rage and a temper tantrum.  They don't tend to last as long, fortunately, but they do still occur.  I just spoke with a Truehope rep who suggested fish oil, 3000 mgs a day.  I saw that your son takes 5000 mgs.  He also has attention/focus issues.  I am fully expecting to have to tweak things as he goes through adolescence/puberty.  It's encouraging, yet discouraging at the same time to see that others are experiencing the same things we are!  

 

I hope your son improves - hang in there!

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Response (12.1.)...  by jistac - 2008-03-29 07:12:34

The girl I knew personally who had POD was not overweight at all but reasonably thin.  So I would be careful to make assumptions based on your daughter's weight.  

 

I have at various times written out all the tests that I feel that somebody ought to do or consider when BP is a potential diagnosis.  I did this for a mom who has a young child.  Funny some people reacted strongly to that.  Then again it is so hard to get a doctor to really "Think" and "Think" outside of the box these days.  My son just saw a urologist and I was so frustrated that this doctor was so quick to come to conclusions about our son.  The key is finding a doctor who is willing to ask a ZILLION questions and to really think about the problem you are presenting them.  But unfortunately that is not the way they are taught in Medical school or the way medical practices are run.

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Response (13.)...  by lydiar@uhs.umass.edu - 2008-03-24 22:04:50

We have great,really perfect, stability in our now 14 year old who started EMPower at age 9. It got this solid and sustained after increasing the EMPower to 18 and adding in 6 mg lithium carbonate and .1 risperdal (.05 am and pm) Some kids need more than the EMPower alone  but you have to add in microdosed meds carefully. I think a few mgs of lithium could benefit almost anyone on EMPower. The docs I know do not use the orotate. We also removed fish oil completely as we realized it was activating. good luck

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Response (14.)...  by nancyo - 2008-03-25 18:33:45

I think our insurance (Blue Cross/Blue Shield) paid for some of these tests through the Great Plains Laboratory.  What you might do is find out from your insurance company what laboratories that they work with (preferred providers?) and then call the laboratories to see if they do these tests.

 

I'm impressed that a pdoc would order these tests.  That is very unusual.  You are very lucky to have found this doctor.  My son's DAN doctor ordered these for him.

 

Nancy

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Response (15.)...  by romiaary - 2008-03-25 20:10:22

We did the kryptopyrrole/pyroluria test through that web site. My sons test was negative, but it gave us something to scratch off our list.  There are only a handful of labs in the world,and I do mean in the world, that do that test.  The insurance companies do not cover it because it is not recognized as a true problem in most of the medical world.  The people who I have read about who have tested positive and been treated for Pyroluria seem to believe it is very real and seem to have positive results.  If I 'm not mistaken, it's been a while, there are problems with B6, zinc, and a few other levels that cause this problem.  Look the condition up on the internet and see if it sounds like a possibility.  The test is easy and they were very professional.  At the time that we did the kryptopyrrole test, the Great Plains Lab was not offering it.  Things may have changed. 

   I've inquired about the histamine test to my doc and he again said very few labs do this testing and he wasn't sure of any local ones here.  My son definitely has histamine level problems.   Again, it is possible that this test is not recognized as useful by the traditional medical community. 

   Its sounds to me as if you are using an alternative doc, or one who believes in things outside of the box.  In my opinion, that can be a very good thing.  My family has had  a lot of success with supplements  and traditional meds mixed.  We are packing up and traveling 12 hours each way just to see a doc like that next month. I don't even know what the bill is going to be, we are trying to save like crazy because these out of the box tests don't seem to ever be covered. You are lucky to have one close by. I'm not so sure that I helped you, but this is what I know about these tests.

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Response (15.1.)...  by tklyon@aol.com - 2008-03-28 22:02:28

My son had a bad day today after lots of exercise. He is stable on EMPower, and he has been using it for three years. He is just starting to run and play during recess, and he is running hard. He had about a 4 hour med release. After it was done, I asked him if he could tell what medication it seemed to be. He said, "This one felt like Abilify." His behavior was exactly like it was on Abilify. 

 

Even though lithium isn't supposed to store in the body like the other medications, a couple weeks ago, my son was ill. He lost some weight. He was lying on the couch and all of a sudden, he said, "Mom, get me something quick to pull out lithium. I'm having a huge lithium release and it's so bad I can taste it in my mouth." I gave a huge dose of whey protein, and he was calm within 1/2 hour with the taste gone (he had his last microdose of lithium in December).

 

The withdrawal processes are tough and complex. In our experience, TH has been right on with their understanding of it. Ask TH about what they know about Abilify withdrawal because I have seen several students go through the process Nancy describes. My son withdrew from Abilify and his processes were nearly identical in descriptions and time frame to her son's. Nancy's story was partly what gave me hope that he could get through it. After the "kickback", my son watched tv for nearly 8 weeks straight, 16 hours a day. He didn't really remember what he watched. And, then, little by little, he showed signs of coming to life again.

 

Tally

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Response (16.)...  by jistac - 2008-03-26 06:47:01

Previous posters are correct, insurance often will not cover many tests done by labs like "Great Plains Laboratory" because many of these tests have not been shown to accurate or we do not yet have the information needed to respond to the information in those tests.  I can't speak to the particular tests you are asking about but I do know that one controversial test is the test for Candida.  An unusually high number of patients who get this test through labs like these come back with high Candida.  But Candida is something that is just around and we can not yet say for sure if it is always a sign of infection or illness.  Typical treatment involves giving pro-biotics, which were believed to be harmless even in excess.  But recent research showed that this is not always the case.  Of course one could easily make a counter argument that we use pharmaceuticals without knowing their full impact and insurance covers their use.  And you would be correct and then we just find ourselves in circles moaning about the state of modern medicine.

 

But I digress.....what you can do is talk to your doctor who sounds open for alternatives and ask him if given the things he wants to look at if there was any way he could explore those things by using only those tests covered by a standard lab and your insurance.  

 

Another possibility is to petition the insurance company to cover such tests.  Some people find that if they appeal and initial rejection they can indeed make headway with the insurance companies on issues like this.  But so much depends on the company and the individual situation.  

 

Good Luck

Jistac

CAM Board Moderator

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Response (17.)...  by mom2nicolas - 2008-03-26 09:58:08

Thank you to everyone for the very helpful feedback.  I have contacted Pyroliate testing about insurance issues and they have provided me with a sample invoice complete with dx codes, etc. that they claim has yielded great success with insurance reiumbursements.  Upon purchase, they generate the invoice for me and I would submit to my insurance.  My doc has mentioned they have had some success with this too.

 

Funny thing is -- I scheduled this appt. with this doc because of a change in insurance companies, thinking I was going to walk in, get a script refill and maybe add an ADHD med.  What I walked out with was a totally new perspective on how to help my son and I am very excited.  (scared, but excited!).  I had not really considered this route for him, but things always happen for a reason.  No other doc had ever picked up on the fact that my son has severe eczema, severe allergies and prone to infection as correlating to his mental health needs.  I'm very excited that we may be close to treating the cause of his issues rather than the just the symptoms.  

 

I'll be back on this board a lot in the coming weeks.  Thanks again for the feedback!

 

Jada

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Response (17.1.)...  by nancyo - 2008-03-30 18:51:35

Tally,

 

It's really amazing that your son can tell which old medication is coming out!  It sounds like his is doing really well.  I'm very happy for you.

 

Nancy

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Response (17.1.1.)...  by mom2nicolas - 2008-04-10 20:04:02

Something I found interested from our psychologist was her belief that kids with mental health issues learn all behaviors as a result of their illness.  She explained to me that while the child may know the difference between right and wrong, they most likely learned the negative behavior to cope with whatever they couldn't deal with during a period of instability.  Then, during periods of stability, they still resort to those negative behaviors because they are in their "inventory" of coping skills.  They have a hard time sorting them out, even in stability. I took from it that if my kid hadn't had to deal with the instability/mental illness, they probably wouldn't have ever learned the negative coping skills or added them to his "inventory." 

 

Just another perspective, I guess.

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Response (18.)...  by jistac - 2008-03-27 17:14:31

My husband had to stop Empower before surgery this fall.  He had been on in long enough that stopping really didn't make that much of a difference.  Interestingly he found that General Anesthesia did WONDERS for his mood.  He said it felt like a ReBOOT.  He then asked a neurosurgeon friend of ours and our pdoc who both confirmed what he was experiencing.  People often respond very well to General Anesthesia.  Obviously there are many reasons why this has not been explored as a treatment for BP.  But it has been discussed frequently according to our pdoc.

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Response (18.1.)...  by jistac - 2008-04-01 06:36:35

Tally,

When your son was growing rapidly in early adolescence any lasting stability seemed to allude us.  It seemed like any stress or trigger would result in him becoming unglued.  I honestly could not ever imagine him doing the things that his older sister was doing, such as driving a car, working at a job, being independent.  I sometimes wondered why were fighting so hard to get this kid stable when many days we seemed to make no progress at all.  But the conclusion we always came to was we had no choice.  Giving up wasn't an option.  I am glad we persisted.  17 is very different than 12, 13, 14, 15 and 16 and the boy who struggled to stay sane is gradually morphing into a very sane young adult.  (With some minor bouts of insanity when it comes to politics but we won't go there....I think he is just doing that to rebel against his liberal parents).

 

So keep plugging away.  You will get your reward.  I just wish it wasn't so much work to get there.

Jistac

CAM Board Moderator

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Response (19.)...  by momtokgb - 2008-03-27 17:14:31

My 16 year old dd has impacted wisdom teeth which need to be removed under general anesthesia.  The Dr. said that we must stop any herbal supplements now for her 4/25 surgery.  This includes anything with ginko biloba, We are halfway on our Empower trip.  She is on presc meds plus 4 EmpowerPlus caps per day.  What will stopping EmpowerPlus cold turkey do?

 

Barbara

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Response (19.1.)...  by tklyon@aol.com - 2008-04-01 13:55:00

Thanks for sharing this perspective. I really needed to read these thoughts right now.  I have been on a real caregiver's low right now in why I am working so hard when there seems to be such minimal progress. I know there is progress, but none of it appears to be sustainable. So, I hope that I will be able to say the same in a few years. We can't even leave him alone yet unless the conditions are ideal and we won't be gone for more than a few minutes.

 

Interesting twist on rebellion there :-). 

 

Tally

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Response (19.1.1.)...  by naominjw - 2008-03-13 09:39:45

> Taking Empower and pmeds together does make them tired!!! My son did this and was tired until we got him off of pmeds. Then, the tiredness went away. 

 

I suspected this. 

 

> Your doc can talk to Truehope if he doesn't believe you. They will tell him this is true.

 

He does not "believe in" any supplement except Fish Oil. Even when myyounger daughter got so much better on EMPower he asked what had changed. We told him. He asked, "No, REALLY" - Like what in her environment did we change. We shrugged. And dropped it. 

 

My younger daughter IS one of the few who IS still on pmeds along with EMPoawer. 

 

It has taken us years to unravel what was going on with her. Her case is too complex for this response. 

 

Anyway, the pdoc is slowly now coming around, especially after seeing my older daughter now better. But he also knows the younger one IS still on pmeds. The two cases are not the same. The younger one still has unstable hormone levels, for one thing, and we have just started addressing intestinal malabsorption issues. 

 

> Take care. Glad to hear she is doing well otherwise!!!!!!!!!!!!!

 

Me TOO!  HER TOO!!!  OMG!!!  I have not seen her this stable in almost a decade. Yay!

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Response (20.)...  by  - 2008-03-27 22:08:13

along with taurine.  They are both supposed to lower cortisol (stress hormone) and glutamate (neurotransmitter associated with anxiety and depression) and probably other things...They seem to be helping, and no adverse effects noted.  I'm sorry though, I don't know her dosage.

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Response (21.)...  by jistac - 2008-03-28 08:03:06

We use it for anxiety.  It is always a bit subjective, but our gut told us that higher doses were not so good for our son.  When we went too high on the theanine it seemed to make our son worse not better.  But our son is complex and sometimes reading his reactions can be tricky. He takes 300mg 3x a day for a total of 900mg.  His anxiety is sort of through the roof and is his main problem these days.  He really doesn't have any issues with cycling, mania or depression.  

 

Hope that helps

Jistac

CAM Board Moderator

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Response (22.)...  by blueyeliz@hotmail.com - 2008-03-28 08:03:06

Has anyone here seen a bad reaction to theanine? TrueHope sometimes suggests it for anxiety or to help with sleep.  I can find no reference to any bad reactions on the truehope board.

Liz

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Response (23.)...  by rnsy8s - 2008-03-28 10:52:02

My 9 yr old BP son's Dan Dr. suggested taking Deplin w/ 4 EMP per day.  Anyone else "mixed" EMP with this?

 

He said up to 70% of people with mood disorders have trouble converting normal folic acid to the form your brain needs for it work effectively??

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Response (24.)...  by dad-wi - 2008-03-28 11:51:41

Hi Ryan, 

Just a disclaimer, I'm just another parent trying to figure this out, and not offering specific advice. My thoughts.. Technically, the meds should be cleared, based on the half lives, however, there're theories that if the body was not clearing them all along, what is not excreted may be stored, encapsulated, if you will. As nutrients are added, and the body becomes able, those stores are gradually pulled out. Chelating toxins like heavy metals is a similar process. The other factor, is that any intervention can apparently cause genes to express differently (turned on or off), whether meds or supplements. That changes a whole cascade of metabolic paths; it may take longer for the body to adjust to those changes than the clearance time of the meds involved. Kind of an inverse of the time it takes to get to therapeutic levels.  We saw aggitiation and hyperactivity when more was pulled than the body could eliminate. Backing off gives things a chance to catch up. We added things like artichoke, SOD, and calcium d-glucarate to help with that process. It also seemed to help adding in amino acids.  Ubiquinol and pycnogenal are two antioxidants that can help as well.  

 

 I haven't used empower, but have often compared the amounts to what we take, both individual supps and another multi I take. I didn't get any indication of excess from our dr., though he did comment on some ingredients 'possibly' slowing things down. Those comments were based on metabolic testing indicating there wasn't a need for particular supps, and if added they could impede the uptake of the ones that were deficient. The impedance was more a concern than toxicity. For one, he wanted us to not supplement copper, due to a zinc issue. We also have amino acids compounded based on metabolic testing. There is always the potential that genetics could prevent some metabolic actions, and result in an excessive amount. I think boomom's daughter has an issue with some vitamins adding too much load on the liver. 

 

Deplin just came up on the med board if you do a seach. From reading on autism boards, which form of folate can be a factor. They have described this defect as the 'folate trap'. I believe Deplin and folinic acid are the same: L-5-methyltetrahydrofolate. Not sure about the BBB aspect, but it affects the recycling of homocysteine back to methionine, critical to the methylation cycle. Our dr just switched Levi to folinic acid, taking 1000mcg, 2x/day. My understanding is that getting enough B12 is critical along with this. He gets a min. of 2 mg methylcobalamin. 

 

He also prefers cod liver oil- without a lot of clinical data, there is debate as to what ratio of EPA to DHA is better. Some research indicates DHA can be beneficial for younger children. Eventually, the body becomes able to better convert EPA to DHA. From reading parent reports, trialing seems to be in order. 

 

The books "Healing the new childhood epidemics", by Dr. Ken Bock, and "Changing the course of autism", by Dr. Bryan Jepson both have been helpful in understanding how these cycles work. 

 

Darryl 

Parent volunteer

dad to 9yo Levi, using supps and diet as treatment for his alphabet...

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Response (25.)...  by debbie_ma - 2008-03-28 12:12:25

Has anyone heard about/used Deplin?

 

http://www.deplin.com/

 

It’s folic acid in its most readily absorbable form and is capable of passing the blood-brain barrier.  The technical name for it is L-methylfolate (MTHF) and it’s available only by prescription and is classified as medical food (??).  It is being marketed as an augmentation to antidepressants to increase effectiveness of the medication.  My son’s therapist has been using it stand-alone to treat depression and has seen improvement in 15 of 15 patients.  I wonder, since it’s used to augment ADs, if it’s activating.  

 

I found these few anecdotal reports…

 

http://www.dr-bob.org/babble/20071225/msgs/803728.html

 

http://www.crazyboards.org/forums/index.php?showtopic=21108&mode=linear

 

http://dailystrength.org/c/Parents-of-Children-With-ADHD/forum/2303011-d...

 

Anyway, just passing the information along in case it’s helpful for anyone.

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Response (26.)...  by naominjw - 2008-03-28 12:32:43

My younger daughter is now 20, and has been on EM Power for 8 years. She did have an increase at some point, moving from pediatric dose to adult. 

 

It only HELPED her stability. It was not complete. It took many years for doctors and us to put together more of the puzzle. By then, she had multiple problems - including osteoporosis! She had intestinal malabsorption issues, and cannot have gluten, soy and more. She also has endocrine issues. In fact... it looks like what triggered off everything in the first place was the malabsorption & endocrine problems which were then treated with antidepressants then stimulants added... and you can guess the rest of the story.

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Response (27.)...  by naominjw - 2008-03-28 12:43:40

I also am only a parent. My daughter's pediatrician thought it was fine. Safe. Turned out to be a darn good thing she was put on it because it turned out she has problems both absorbing the nutrients as well as utilizing some of them. 

 

Because she ended up with osteoporosis, she has been under the care of a kidney and bone metabolism specialist. He also is fine with the EM Power. In fact, the only tweaking he did was with a different supplement for her bones - changed her calcium supplement. He determined this based on 24 hour urine testing and multiple blood tests. They CAN measure what's in the blood and what is being excreted in the urine, and know if anything is too much. So if there is really concern - let them TEST it!!!! I can't understand why my dog gets more comprehensive testing than my child used to get. 

 

Another "in fact"... the doctors ended up adding MORE to her regimen - like extra vitamin C, D, B5, and omega-3 fatty acids... and others, specifically targeting her needs.

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Response (28.)...  by nancyo - 2008-03-28 12:49:32

When you say 'agressive titration' what do you mean?  How fast did you increase the Empower and how fast did you wean your son off his pmeds?  If it has only been 2 weeks since stopping his pmeds it is very likely that he is still going through withdrawal, especially if one of them was Abilify.  Approximately 2 weeks after stopping Abilify (with a very slow weaning) my son became very manic.  He would shout out various things (printable and not), was very hyper and got into a lot of trouble in school.  He settled down after about a month but then became rather depressed for another 1-2 months before snapping out of it.  Truehope refers to this process as Abilify 'kickback'.  I think your DAN doctor underestimates the difficulty of weaning off pmeds. Many doctors (including pdocs) do not understand how difficult the process can be for some.  Our experience was that it was hard to tell what was effective until my son was past the primary withdrawal period.

 

My son's DAN doctor was quite comfortable with my son using Empower and in fact suggested it.  But it is not the same as taking individual supplements tailored to your son's chemistry based on various tests, like what dad-wi does.

 

Hope this helps somewhat.

 

Nancy

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Response (29.)...  by dad-wi - 2008-03-28 18:29:28

Read about the odor issue elsewhere... It may be the trigger that has your dr concerned. 

 

High doses (10 to 16 grams/day) of choline have been associated with a fishy body odor, vomiting, salivation, and increased sweating. The fishy body odor results from excessive production and excretion of trimethylamine, a metabolite of choline. Taking large doses of choline in the form of phosphatidylcholine (lecithin) does not generally result in fishy body odor, because its metabolism results in little trimethylamine. A dose of 7.5 grams of choline/day was found to have a slight blood pressure lowering (hypotensive) effect, which could result in dizziness or fainting. Choline magnesium trisalicylate at doses of 3 grams/day has resulted in impaired liver function, generalized itching, and ringing of the ears (tinnitus). However, it is likely that these effects were a result of the salicylate, rather than the choline in the preparation (4).

http://lpi.oregonstate.edu/infocenter/othernuts/choline/

 

Some other info at

 http://www.ghchealth.com/body-odor.html

http://www.ars.usda.gov/research/publications/Publications.htm?seq_no_11...

http://www.florahealth.com/flora/home/Canada/HealthInformation/Encyclope...

http://www.encyclopedia.com/doc/1G1-103194443.html

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Response (30.)...  by jistac - 2008-03-28 22:20:29

I have shown the EMP bottle to many doctors and scientists (a neurosurgeon, a gastroenterologist,an anethesiologist, pediatricians, internist and a molecular biologist) none of them has any concerns about the product or the quantity of vitamins.  BUT, that does not mean that it is safe or that there might not be some problem with them.  We really do not know a lot about why certain people seem to need extra nutrients (like Lithium) and why others do not.  We do not yet know why some people have trouble absorbing nutrients and others do not.  And we do not yet know how any one person will react to supplements, nor do we have any scientifically proven ways of determining how any one person will react to supplements.

 

Nor do we really have any data on the long term impact that these medications have on the body and whether or not they alter systems in the body that then take time to reset and readjust before they are normal again.  

 

I do know from my son's pdoc who has treated 100s of patients with EMP that he has not seen anyone have any problems with their Kidney.  Kidney issues are a concern for those taking Lithium.

 

I wish there were simple answers or that I could tell you the right thing to do.  So much depends on whether you personally like this DAN doctor and trust him and feel comfortable with him.  Then by all means follow his protocol and use him as a resource.  What you want is a doctor that is going to be there for you and is willing to work closely with you to find some protocol that will get your son stable. 

 

Good Luck and keep us posted.

Jistac

CAM board Moderator

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Response (30.1.)...  by zbarbuff@vcn.com - 2008-04-03 20:19:57

Thanks, Rebecca!

Terri

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Response (30.1.1.)...  by pumpkin - 2008-03-17 11:42:00

Glad it is helping. I would consider going faster to get her off of Lamictal. The sooner, the better she will feel, I believe!!!! The pmeds together w/the Empower ARE THE CAUSE of her fatigue. So, until she is off Lamictal, she will feel tired. Take care!

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Response (31.)...  by boomom - 2008-03-29 06:43:01

Just wanted to add my DD's experience as to the kidney question.

 

She was taking massive B vitamin supplements (not EMPower brand but others) and they were pure and at the doses the EMPower uses.  

 

It did shut her kidneys down to the point of them almost not functioning again.  Why?  I guess her system specifics.  However, it does happen.  I know of three other cases in the Cleveland area of the same thing.  Each child is different though.  Massive doses of fish oil made her have diarrhea to the point that she lost most nutrients she was intaking and couldn't get off the toilet.  Again, for her, it wasn't good.

 

She takes Lithium now and has no kidney issues thus far (it's been about 6 months) and is stable.  For her, the Lithium was what was needed.  (She's been on meds for 9 years - every one - and lithium is best for her.)

 

If EMPower works for you then you should continue it.  If it doesn't then you should tweak what you're doing.  Although I think that trialing something for 4 weeks isn't long enough to determine if it's going to work - meds or EMPower.  If he's psychotic then of course, you need to do something.  If not, you may want to give it more of a a trial period.  Good luck!

 

Peace,

Alyson

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Response (31.1.)...  by zbarbuff@vcn.com - 2008-04-03 21:15:09

Thanks ,Rebecca. We live in a very small town and all the doctors practice at the only clinic and are of like mind. They are all our doctors. It just depends who's on call when we go in. I will try to find that website and do more research.

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Response (31.2.)...  by jistac - 2008-04-04 06:42:01

Would it help if the pdoc's contacted somebody like Dr Charles W Popper?  Perhaps if they spoke to somebody with his reputation they would feel better about the treatment.  Have you printed out the journal articles from the Journal of Child and Adolescent psychiatry relating to EMP?  That also might convince them that you are using a legit treatment.

 

So sorry to hear about your troubles and hope things sort themselves out with your son soon.

 

BTW, please keep in mind that if your son is smoking even tiny amounts of Pot that the EMP might not be at all effective and could actually make things worse rather than better.  It is unfortunate but the EMP seems to have a dramatic affect on any substance that alters the brain chemistry and people taking EMP seem particularly sensitive to POT.  So that in some cases EMP is not the treatment of choice for a teen.

 

Jistac

CAM Board Moderator

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Response (32.)...  by blueyeliz@hotmail.com - 2008-03-29 07:12:34

It's been quite a while since I posted, and I probably don't have the energy to give the full update I should...but here's the basics.

10yo DS on EMP since Aug07, after a bit over a year of traditional pmeds, psychotic episodes, one disastrous phosp stay of 2.5 weeks (in my opinion CAUSED by pmed changes).  Anyway, started EMP in August, saw immediate improvement.  Still overall very much more stable on EMP.  School teachers/counselors are thrilled, say he is "a different child", with a sparkle in his eye and a smile.  This same boy was falling asleep in class regularly, practically a zombie and getting poor grades in everything a year ago.

So that's all the good news....here's the not so good.  We still struggle (and A LOT lately) with seemingly unexplainable rages and tantrums.  A week ago and again this weekend we are struggling with huge rage issues, defiance...nice example, he stood with a smug smile on his face friday night while pouring grape juice on my beige carpet and saying "I hope it stains."  So I tell repeat to myself over and over...it was no better on pmeds - worse....

And yet. 

I need to hear some good stories.  Have parents out there seen SUSTAINED stability?  It seems no matter what I do he will only stay stable for a few weeks if I'm lucky.  Although, as I said, it seems 100% focused at home these days, so at least they aren't getting ready to throw him out of school.

Guess I had more to say than I thought.  Encouragement, ideas, thoughts much appreciated.

Liz

10yoDS - 11 EMP / 1200 Choline / 500mg Taurine / 5000mg Salmon Oil / High EPA oil / Amino Acids PLUS 'microdosed' Risperdal @ .04mg twice daily & lithium orotate 15mg twice daily

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Response (33.)...  by jkwagneraz@qwest.net - 2008-03-30 02:41:33

You all may not notice this post since it's a bit old, but I've really benefitted from your discussion!  We're going gfcf on April 1 for the whole family, but especially targeting my 7yo son who has been diagnosed asperger's but looks very eobp also.  Darryl, thanks for the article.  I'm about 1/3 of the way through it, but very helpful for a newbie like me!

 

Kristi

Mom to Caleb 7, asperger's/eobp?

Ben 5, SPD

Zach, 3 so far just energetic and cuddly

Bekah, 1 princess power!

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Response (34.)...  by boomom - 2008-03-31 19:23:25

It's very possible they're urinating it out of their systems.  The body has a way of getting rid of what it doesn't need.  

 

High calcium is usually a result of a physiological response not to increases in intake.  

 

Peace,

Alyson

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Response (35.)...  by trehouse@optonline.net - 2008-04-01 07:48:42

If a person had high blood calcium, it would be extremely likely to interfere with cardiac functioning and they would wind up in the ER. Just like sodium, calcium has a huge role in muscle contraction and the heart is a muscle. 

The supplemental dose of calcium SHOULD NOT affect blood calcium levels, and you would not want it to. 

 

Sam

max, 6, lamictal/invega

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Response (35.1.)...  by pumpkin - 2008-03-13 07:36:11

Taking Empower and pmeds together does make them tired!!! My son did this and was tired until we got him off of pmeds. Then, the tiredness went away. Your pdoc is wrong about being a sleep problem. It is because she is on the Lamictal and Empower together. I would start lowering the Lamictal immediately. Your doc can talk to Truehope if he doesn't believe you. They will tell him this is true. Take care. Glad to hear she is doing well otherwise!!!!!!!!!!!!! :wink:

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Response (35.2.)...  by naominjw - 2008-03-13 09:30:28

Thank you for your response. I, also, am concerned about her thyroid. She does have hypothyroidism, and her GP (medicaid) will ONLY test TSH. That's how my younger daughter's low thyroid was missed for years because she actually has teriary (hypothalamic) hypothyroidism. Also, I worry about my older daughter's adrenals, and the fact that she may not be converting the T4 to T3 (that's true in the younger daughter's case). I have finally convinced my older daughter to see my younger daughter's GP - and I'll pay cash. I have no confidence in the medicaid doctors she has been seeing. 

 

She used to drink caffeine. She has quit. Hmmmm.... I wonder if this tiredness is actually just something she was self-treating with the caffiene, and it is now such an issue because she has quit the caffeine. 

 

Hmmm, Ambien can be destabilizing? Interacting with EMP? 

 

Actually, I had not discussed it with TrueHope. They had already said she needed to lower ALL the meds at the same time, not just Abilify. But her pdoc has been adament about not lowering her Lamictal. 

 

The only supplement he "believes in" is OmegaBrite because that has been proven in double-blind placebo controlled clinical trials, so he considers it mainstream, traditional medicine. He prescribes OmegaBrite and the new prescription fish oil so medicaid pays for that (see blog: http://itsnotmental.blogspot.com/2008/02/fish-oil-and-favorite-brands-of...).  

 

The soonest I could get my older daughter in to see the same GP as the younger daughter is actually not for several more weeks.  

 

Although her own GP tests TSH... like I said, I have no confidence. Perhaps you are right about the thyroid thing... and maybe it is the Lamictal. 

 

I am terrified to advise her to try lowering it herself.:chagrin:   ... maybe when she starts seeing the new GP....???

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Response (36.)...  by rnsy8s - 2008-04-01 16:56:21

I'm new to this and need some advice/support/help....

 

My 9 yr old BP son has been on EMP for 1 mo. Stopped all pmeds two weeks ago after aggressive titration. (abilify, lamictal, seroquel). He's now up to 10 EMP/day.

 

He's VERY activated and defiant. Choline-B seems to help a little. Also takes 1000 mg of Wild Salmon Oil per day.

 

We just saw a Dan Dr. yesterday. He said all the meds should be out of his system by now. Abilify has the longest half life and after two weeks it shouldn't be a factor anymore (not sure I believe him). He was not happy with EMP. Thought it was just an "overdose" of vitamins and was concerned with kidney problems from the 10 pills a day.

 

He suggested we use Deplin. It is a prescribed form of Folic Acid. It is supposed to be equivalent to taking 66 - 800 mg Folic Acid pills! He said 70% of people with mood disorders have trouble converting folic acid to l-methylfolate. Since this product is already "converted" it passes the blood-brain barrier much easier. So he suggested taking one Deplin in the morning, four EMP capsules and one Omegabrite in the morning.

 

So as a result of this appt I have a few questions:

 

1. Is there any concern of renal/kidney problems with EMP even though most of the ingredients are water soluble?

 

2. Anyone else heard of or tried Deplin?

 

3. I need some encouragement to make it through this very difficult time. Son is driving my wife and I to our LIMITS!!!

 

Thanks everyone...

 

- Ryan

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Response (37.)...  by jistac - 2008-04-02 06:29:38

Well I know that we had been working on getting our son stable this past summer and fall and our pdoc had us gradually remove the Choline.  When I tried to remove the Choline too fast we had MEGA problems (and we now believe that some of the school problems we had over the summer were related to our removal of Choline).  I found that we had to remove 70mg (or one compounded pill) every 2-3 weeks to pull it and not have problems.

 

Also he is on a lot of lithium for somebody on Empower.  The amount that most people who add lithium to EMP are on is in the 12-21 range.

 

And he is not on a loading dose of EMP (which I believe is 12 pills these days, but I could be wrong.  I know that we put our youngest child who is not technically diagnosed with BP but who started to have sleep and mood issues, on a preventative dose (which btw immediately took care of the sleep and mood issues) and he takes 12 pills a day.  When he takes less he starts to have the sleep problems and complains of "not feeling well".  

 

I also wonder how much the fish oil is contributing.  There are reports that fish oil can contribute to instability in some kids.  And I personally know that our pdoc doesn't use it along with EMP because it has just created too many problems.

 

So in the end your son might be getting too much or too little of any one thing.  It is difficult to know.  And figuring it out is tricky because it takes trial and error and observation and time.  You could increase the EMP, and that might in the end be the right dose but because increasing the EMP might mean that now your son is getting way too much choline and lithium and those things will need to be reduced before you see stability.  

 

Also remember that your son is indeed growing and changing right now (and for the next 7 years) so patience is going to be needed.  With some of these complex kids stability can take time as their bodies settle and heal.

 

I would definitely try to work with somebody at Truehope to see what you can do with this.

 

Jistac

CAM Board Moderator

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Response (37.1.)...  by naominjw - 2008-03-13 17:50:50

She is taking 11 pills per day. She is on maximum dose Lamictal - 300mg. 

 

She is going to cut back on the Lamictal just slightly and see how that goes. I just didn't want to do that without the pdoc being on board about this, but on the other hand....

 

THANK YOU!!!!!!

 

I'll give an update in a couple weeks and let you know how it goes.

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Response (38.)...  by blueyeliz@hotmail.com - 2008-04-02 06:29:38

My DS10yo has been on EMP since early Aug 07.  Off all pmeds by early October (trileptal last to go).  Destabilized during holidays.. could not find relief so added .04mg (yes thats POINT ZERO FOUR) risperdal.  Also taking lithium orotate, but only 1/8 of a 120mg tablet twice a day.  Tried to dc risperdal in february, and 2 weeks later huge issues (including one police report...don't ask).  So added .04mg back in.  Seemed to stabilize but then 3wks ago went WAY OFF RAILS.  At my wits end...refused to go to school 4 of 5 days last week - no violence necessarily but wants to do nothing but play video games for 12hrs daily.  Hardly speaks to me but when he does he is vicious and hateful.

Have reduced both choline (from 2000 to 1050) and salmon oil (from 5000 to 3000). Desperate. Taking all pills (one of the few things he is currently compliant with).

Please help!

Liz

DS10yo (11 EMP, 1050 Choline, 3000 Salmon oil, 6 amino gold daily, .04mg Risperdal, 30mg lithium orotate)

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Response (38.1.)...  by naominjw - 2008-03-13 17:21:14

Wonderfully, she isn't depressed. Oh - she has gotten depressed a thousand times before, but she is feeling in a pretty good state right now. A little fragile, but still not as fragile as before. She's the type that the least little depression and she curls up and cries and cries. She is trying to push through her fatigue. No crying. No curling up into a ball. Still out and about as much as she can. This fatigue feels very physical to her.

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Response (38.1.1.)...  by  - 2008-03-28 12:12:25

The same post was made on the meds board, and Dad Wi answered at some length, so you might want to check there.

 

Rebecca

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Response (38.1.1.1.)...  by jistac - 2008-03-30 07:07:11

I hope the GFCF diet works for your son.  I hear that when it works it is pretty dramatic and sometimes symptoms completely disappear.  

 

I wish it wasn't so confusing but since your kids are young hopefully in the next few years more might be learned on this subject.

 

Jistac

CAM Board Moderator

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Response (39.)...  by naominjw - 2008-04-02 17:15:50

I feel like we had to piecemeal together help from all over the place. 

 

We lucked out with a GP we got locally via word-of-mouth. He is so caring and will spend however much time is needed. And of course, our insurance won't pay for him. He has even gone to several continuing medical educations (CME) seminars in order to better help her. 

 

We got an endocrinologist half-way across the country via word-of-mouth on the Internet who at least got us looking at the right things. 

 

We found supplements that helped certain conditions via a doctor consultation from a non-profit organization, free to members - www.lef.org . They also let us know about integrative specialists in our area. 

 

The least helpful doctors of all turned out to be the endocrinologists and neurologists at our big university medical center. 

 

No one size fits all. Like the endocrinologist who helped my daughter I found because she had strange sleep episodes-probably not an issue most other children have. In trying to get at the source of those, he found some major keys to a host of problems my daughter was having. The testing was extensive, and I felt frustrated that our local endocrinologists had not run them. After all, as he pointed out - any doctor could have ordered them - they just don't.

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Response (39.1.)...  by pumpkin - 2008-03-13 19:21:21

I hate to do things w/out pdocs approval also, BUT, when he/she is not on board w/helping us, it is time to do things without him/her. Truehope can take the place of your doc in advising how much to lower at a time and how rapidly. I was surprised at how rapidly we dropped our meds. It worked better because then my son got his energy levels back once off all pmeds. My doctor did not feel comfortable w/Empower, so we did the transition w/out her. She welcomed us back when we failed at Empower and had to go back to pmeds. She did acknowledge that my son was doing well on them, however.

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Response (40.)...  by drisme666@aol.com - 2008-04-02 17:15:50

I have to tell you all I did some contacting/researching today..this is NOT easy at all. There is one doctor near me who is a naturopathic doctor, but he's no a pdoc and there is no mention of his experience w/mental illness on his web site. Some of the DAN docs I've contacted are regular fam. prac. with an "expertise" in testing for chem. imbalances and working w/ our own pdoc to supplement my son's currect meds ~ possibly lessen them as time passes. Is that the approach I'm supposed be looking for? I feel so lost in all of this. Any feedback would be appreciated.

drisme

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Response (41.)...  by naominjw - 2008-04-02 17:21:57

My daughter is under the care of a bone-metabolism specialist due to a diagnosis of opsteoporosis (just osteopenia now). Her blood calcium level was high BEFORE treatment only because she was leaching out calcium from her bones and NOT absorbing calcium!  

 

So, high blood calcium would actually be a bad sign. 

 

The bone specialist checks for a host of things in her urine, and has had us tweak supplements in order to lower some amounts. The kidneys excrete what the body does not need. If something is quite high in the urine it means they are working extra to get rid of an excess. Although she takes EM Power and a host of other supplements, the only thing he ever had us switch was her calcium supplement to one with lower magnesium.

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Response (42.)...  by romiaary - 2008-04-03 06:30:44

I just had a whole bunch of blood tests done in preparation for my kids seeing a  specialist in a few weeks.  They had calcium and magnesium serums done and they came back normal.  The weird thing is, they are on large doses of calcium/magnesium, the good expensive kind that I researched thoroughly.  They have been on it for about two years, it helps them tremendously with tics, but I expected it to be much higher than normal.  Does anyone know if this means that they do have a deficiency and the supplements are making up for it, or if its not staying in their system?

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Response (42.1.)...  by naominjw - 2008-03-14 16:05:51

Thanks, all of you. She's an aduly now. Its her decision. She went ahead and lowered the 300 mg Lamictal by just 25 mg. She already feels better which makes her scared that she'll be manic. I feel it is sad that every time she feels the least bit better she is scared. But I guess that is her way of coping and monitoring herself. 

 

She got severe akathisia and anxiety on the abilify. That's what made her decide to do as her little sister does and take the EM Power. The weird thing is that the akathisia persisted even after she got off the Abilify. Now, it just happens at random, but it still sometimes happens. 

 

So, her pdoc blames the EM Power for her akathisia. That's weird since she didn't have it until the abilify. 

 

I don't want to switch pdocs. I really do respect him. He cares about my kids. It isn't like we have a lot of choices. We've tried others that do medication management. This guy gives his time. 

 

With my younger daughter, I put her on the EM Power because it seemed like we didn't have much to lose. Wow. I am so grateful we tried it. She is still on psychotropics, but she was psychotic without the EM Power.

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Response (43.)...  by jistac - 2008-04-03 06:30:44

Have they ever had their parathyroid checked?  This is checked by a blood test that measures the hormone that the parathyroid excretes.  I forget what the test is called but I think it is PTH.

 

Parathyroid regulates calcium and we have four of them.  But we only need one of them.  Sometimes they get small growths on them that interrupt how they function and this then affects calcium levels in the blood.

 

PTH disease can in fact mimic the symptoms of Bipolar disorder.  So it is something to possibly pursue.  I don't know if it exists in children.  My dh had it and I have since heard about several other adults who have had it.  But I suppose it can't hurt to ask your doctor about it, right?

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Response (44.)...  by  - 2008-04-03 16:52:20

http://www.autism.com/

 

The idea is that these Dr.s are looking for, and addressing, biological causes for symptoms.  Disorders affecting the brain, not brain disorders.

 

Best, 

 

Rebecca

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Response (45.)...  by zbarbuff@vcn.com - 2008-04-03 20:19:25

Can someone help me to clarify something? Our 18 yr old BP son is in jail and the County Dr. won't okay him to take the EMP he started on Tues. He says that at the 15 caps a day dose, the level of vitamin A he would be getting would cause his bones to become brittle and he will develope osteoporosis by age 25. So he won't allow it. It's not a big deal now because he just started taking it, but if he does remain in jail, this would be an opportune time for him to take it since as a result of getting into trouble he has finally decided to make some healthy choices. They have convinced him that the EMP is harmful to him. I am steaming mad but I don't have the expertise to battle with them. Plus he's 18 so I don't have ANY influence now. I encouraged the doc to do some research on the true hope website...to no avail. He (son)is recently diagnosed and isn't on any other meds...he was self medicating with  pot.  Any help would be greatly appreciated.

 

Thanks,

Terri

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Response (45.1.)...  by nancyo - 2008-03-15 20:14:35

I'm glad she is feeling better.  I hope that she will continue to feel better and that the improvement is 'real'.  I looked at the prescribing information on Lamictal.  It lists sleepiness as a possible side effect.  Course it an unusual side effect, but EmPower magnifies the effects of pmeds, including the side effects (I assume).

 

Keep us posted on how your daughter is feeling.

 

Nancy

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Response (46.)...  by zbarbuff@vcn.com - 2008-04-04 06:42:01

Is DAN an abbreviation for a naturopathic Dr.? I looked it up in the online abbr. and couldn't find what it meant.

 

Thanks,

terri :chagrin:

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Response (47.)...  by brandonmsmom - 2008-04-06 08:00:22

I havent been too active here as things have begun to change with Brandon (more about that in a moment) but after working with a good pediatric neurologist we have found that we missed some things early on. 

 

Brandon has static encepholapathy and cerebral palsy (mixed type) she said the brain damage was likely present at birth. She said the good thing is it isn't degenerative but it is hard to treat medicinally since it isn't a chemical imbalance but a structural issue within the brain itself. It also explains what the EPS was when we transitioned form the meds to the EMP it was actually something that was there all along just controlled to a point by the meds.

 

So now we are back to square one to some degree. The neuro wants us to admit him to the university hospital newly formed pediatric neuro psych unit to look at his behaviors from a different point of view and do a full psych eval with the new dx's. His behavior has been more aggressive since his huge growth spurt and the neuro thinks pre puberty is an issue for him. We are also seeing alot of defiance and almost a coldness from him which is fairly unusual. 

 

Everyone here has been a great support for us while we where in the midst of some very tough times and I want you all to know how very much I appreciate it!

 

Brandons mom

Amy

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Response (48.)...  by jistac - 2008-04-06 08:00:22

Oh Amy,

Part of me is glad that you found the route cause to Brandon's difficult behavior.  Part of me is sad that it is something structural and difficult to treat.  But it sounds like you have a very good team put together who is going to work with you to get Brandon to the best place possible.  And it is good that you found all this out now.  This information will be invaluable to Brandon as he grows up because it will help him understand himself. 

 

One thing that your story proves is that we must be very very careful with BP that we don't assume that all children who exhibit BP behaviors have BP.  The behaviors are just a symptom and there can be so many route causes for this behavior, even some that we don't even know yet.  

 

Brandon is lucky to have a mom that didn't give up and who found the resources she did.  Please stay in touch and keep us posted.  I will be curious to hear what happens as Brandon goes through this evaluation period.

 

Jistac

CAM Board Moderator

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Response (48.1.)...  by naominjw - 2008-03-28 18:00:03

Jistac said:

> Typical treatment involves giving pro-biotics, which were believed to be harmless even in excess. But recent research showed that this is not always the case. 

 

????  The only study I ever read about it not being harmless was in an extremely unnatural situation that I would not count... when they tried, in pancreatitis cases, to put it directly (via a tube) into a part of the intestine that normally doesn't have much flora. Was there something besides that? That case was like us pouring anything (water, milk) into a place unnatural in our bodies then saying that thing was not harmless. I know that some headlines made it sound that way.

 

Was there something other than the the pancreatitis one that showed it might not be harmless? If so, I would very much like to pass that information on to someone I know studying dietetics.

 

Thanks, 

"Naomi"

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Response (49.)...  by elialex - 2008-04-07 10:53:42

How about bribes?  When our son was particularly unstable a small piece of candy made him feel like he got the best of us and we got the pills in him.  He really liked those little Andes candies. The bribes were only needed in the short term.  It seemed to help if I used my "camp counselor friendly" voice and asked him if he wouldn't like to come have his pills and a pick out a piece of candy too.  I realize the candy route is not necessarily the best but it worked.  Also he is an only child which makes bribing easier.  When he was very small I would buy a big box of markers and let him take one for every dose of whatever he was taking.  How sophisticated is your 4 yo?

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Response (49.1.)...  by jistac - 2008-03-26 15:56:40

I am a big believer that all sorts of avenues have be ruled out before giving an official dx of BP in young children.  Because young children don't express physical discomfort the way adults do and they can indeed express it through their behavior and being irritable and that can look like BP.

 

I am so glad that you found this pdoc and I hope he helps you help your son.  He sounds like a keeper.

 

Jistac

CAM Board Moderator

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Response (50.)...  by dad-wi - 2008-04-08 18:17:01

I had it bookmarked, but haven't investigated the site.

This looks like a place to start: 

http://www.umdf.org/site/c.dnJEKLNqFoG/b.3752521/

 

near the bottom of that page is another link:

"Click here for more information regarding diagnosis, tests, and laboratories that perform mitochondrial testing. "

 

I've read articles citing mitochondrial dysfunction as a factor in BP, and other chronic illnesses. It is another area that apparently can be helped thru nutritional supplements. Just like with other issues, I think there is a degree of severity involved. I can't say specifically what indicators our dr has used to identify which is due to what, other than to say that he indicated it as something we needed to support. 

 

 http://clinicaltrials.gov/ct/show/NCT00327756;jsessionid=8B264667F49AC5B2449ACA55973955AC?order=5

 

http://www.jbc.org/cgi/content/abstract/282/25/18057

 

http://www.sciencedirect.com/science?_ob=ArticleURL&_udi=B6T56-4JVK56D-3...

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Response (50.1.)...  by mom2nicolas - 2008-03-27 08:55:47

Just a little update on the metabolic panel kit.  I have spoke with reps from Pyroliate testing and my pdoc's nurse.  Apparently, the lab is able to do the blood screen without the kit, however, the kit also includes a urine screen.  Pdoc wants to see not only what levels are in his body, but what levels are being excreted as well.  I guess this helps him figure out how things get out of balance.  

 

People from Pyroliate testing have been very, very helpful and quick to respond to my emails.  

 

I guess I'm just that pesky, educated patient who does my homework before doing anything, as the pdoc's nurse said I was the first person to ever ask about having the panel done individually and not to have duplicated blood draws (1 from kit, 1 ordered by doc.)  Pdoc didn't even know that the kit included a blood draw.  

 

I feel like we are making progress and I feel so comfortable that the pdoc is allowing me to be an active decision maker in the whole process, rather than saying "do what I say because I said so!"

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Response (51.)...  by naominjw - 2008-04-08 20:05:55

Some strange things actually fit my daughter... but strange things fit so many other things as well. Bouts of ataxia (due to... migraines, med side-effects, sleep disorder...), multi-generational maternal inheritance of migraines, weird problems with eyes including night sudden loss of some color-vision ... but just in one eye, and we chalked it up to a weird permanent medication side-effect... and familial progressive night blindness... hypothyroid... and even hypoparathyroid which corrected itself but it probably was due to the osteoporosis. 

 

I read about cases of "schizophrenia" caused by mithocndrial genetic disorders.

 

What got me on this line of questioning is that simple CoQ10 has given my daughter back some of her life... she'd had such severe migraines. And CoQ10 is also given for mitochondrial dysfunction, and is being tested by NIMH.

 

I just wonder - since sometimes the ONLY symptoms are in the brain - why do they not test for this before diagnosing "mental illness"? No need to answer... that was a rhetorical question.

 

Thanks for the links. Very informative.

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Response (51.1.)...  by blueyeliz@hotmail.com - 2008-03-27 11:23:42

Wow, it sure sounds like you found a great pdoc tho, willing to look at these kinds of tests.  You don't happen to be in the puget sound area do you?  always hoping....

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Response (51.1.1.)...  by tklyon@aol.com - 2008-03-31 14:09:48

Nancy,

 

It is nice he can tell what is coming out when. This withdrawal process is so difficult for him. He is so high maintenance still on this--even nearly 2 years off everything but lithium. He is growing like crazy, though, and he is also losing fat in the process of that and/or because of increased physical activity. TH tells me that growth streaks dislodge all sorts of stuff. Of course, so does physical activity, which we are very happy to see.

 

I suppose my son is doing well overall. But, any med release leads to meanness at best with repetitive behaviors such as pestering the dogs, saying the word "Crickatoon" over and over again, using a growly voice, chewing holes in his shirt, etc. He still needs whey protein every 2 hours all day long, and sometimes, he needs activated charcoal to pull out the old meds because it is too much for the whey protein to handle at once. Honestly, now that he is the size of an adult, I am exhausted with the process.

 

But, we continue to see improvement over time in many ways. We just wish this withdrawal process would end. I suspect that my son is ultrasensitive to any residual medication.

 

Tally

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Response (51.1.1.1.)...  by naominjw - 2008-04-12 09:47:48

I completely agree with this. My younger daughter always had OCD-ish behavior (the doctor diagnosed it as "OCD" but to this day I am unsure, and she disagrees with the diagnosis (she'd grown-up now)) Anyway, her older sister, with adult-onset bipolar got that way as she became more stable. BOTH say the same thing - they got they way in order to cope with an internal life that they felt little control over. Although, my younger daughter adds the world was so chaotic and people did mean things... and this was her way to make things "right". But again - that goes back to her intense feelings.

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Response (52.)...  by dad-wi - 2008-04-08 21:45:07

We've been taking ubiquinol form of CoQ10

http://www.lef.org/newshop/top_products/004_coq10.htm

 

http://www.discount-vitamins-herbs.net/coq10_ubiquinol.htm

CoQ10 plays a crucial role in the production of cellular ATP (adenosine triphosphate), which provides energy to all cell functions. (role of mitochondria)

 

Coenzyme Q10 is an antioxidant that has great importance as a free radical scavenger. CoQ10 protects the stability of the cell membrane, protects DNA from free radical induced oxidative damage, and helps recycle Vitamin E.

 

Darryl

Parent volunteer

 

if you search "oxidative stress" on the boards or archives, there is more info about the damage free radicals can do, and the benefits of antioxidants.

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Response (52.1.)...  by mom2nicolas - 2008-03-27 20:41:48

We are in the Indianapolis, IN area.  I scheduled this appt. by picking the name off my insurance company's approved providers.  I had no idea what his approach was when I scheduled-- he's part of a large mental health clinic and I thought I would have good luck with getting pdoc/therapist in one stop.  Funny how things work, huh?

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Response (53.)...  by naominjw - 2008-04-08 23:51:03

Yep. That's what my daughter takes now (from LEF), but before that she took LEF's ubiquinone - super absorbable. That worked great, too. 

 

But she has not been on L-carnitine. 

 

I am wondering if she should be tested for mitochondrial dysfunction before getting on more supplements... but I wonder - if she gets on supplements - will the tests be valid? Considering she already is on supplements and the coQ10 was such a miracle for her migraines...

 

Do others get carnitine levels tested before giving L-carnitine?

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Response (54.)...  by nancyo - 2008-04-09 18:10:22

The transition from pmeds to empower can be very difficult.  I am so sorry that this happened to you.  I don't have any words of wisdom other than to say that something similar happened with me and my son.  His dad was out of town and he had a bad reaction to a B12 shot.  He became very agressive toward me so I in desperation called 911.  I probably wouldn't have called them, except I was worried about my younger son.  Fortunately, the police were very understanding and my son calmed down after talking to them.  

 

It is so hard to hold our children 'accountable' for their actions when we can't tell the difference between learned behavior and instability.  

 

Nancy

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Response (54.1.)...  by jistac - 2008-03-29 07:31:01

I unfortunately do not have the study or a pointer to the information.  But I read about the study or info in the New York Times Science Times.  Apparently ingesting large doses of Probiotics actually slowed healing or recovery in a certain group of patients.  I wish could give you a pointer to the study.  What I remember thinking when I read it was that it always turns out that way:  Things that appear to be good for us have some downside and anything that is good can also be bad.  It all depends.  It is like Vitamin E. We used to think that it did no harm and everyone was recommending taking it for your skin and for health.  Now we know that too much Vitamin E can be dangerous and cause potential harm.

 

I will see if I can find the probiotic info.  But right now I have a crazy crazy puppy who is insisting that I play ball endlessly with him.  I just crated him so hopefully he will calm down.

 

Jistac

CAM Board Moderator

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Response (54.2.)...  by jistac - 2008-03-29 11:06:24

Naomi,

Spent some time googling and yes in fact the study mentioned in the NYTimes was indeed the pancreatis study.  There was no mention of it being injected though.  What I read said that patients were given either  a placebo or a commercially used probotic.  But you might be right and it was indeed rejected.  I couldn't find the actual study, just lots of science reports on that study.

 

But I do think that what can be learned from this is that you can't assume anything is harmless 100% of the time.  I love to read medical mystery type articles and one recently really drove the importance of having a good clinician working with you.  A DR arrived in the ER with all the symptoms of a stroke.  It was tempting to give him the drug they give that prevents damage from happening as a result of a stroke.  But something about the guy's initial blood work didn't quite fit with what one would see if he had had a stroke and the ER doctor paused and decided to risk waiting to give the drug (which must be given as soon as possible after having the stroke to be effective) to do more tests.  The situation was borderline enough that many other doctors would of just given the guy the stroke medicine figuring that it was better to be safe than sorry.   It was a good thing they didn't give him the stroke medicine right away because the nagging feeling the ER doctor had that things were not quite fitting together saved this guy's life Many tests later it was discovered that the guy did not have a stroke but had an aortic tear and had they given the medicine for a stroke to this guy it probably would of killed him.  

 

Hopefully your friend's situation with their stomach and their gut is getting better and will eventually heal.  

 

Jistac

CAM board MOderator

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Response (55.)...  by jistac - 2008-04-09 21:00:06

It is so hard to be a single mom of a kid with this illness.  I know that my dh was always worried when he traveled that something would happen that I couldn't handle.  I am petite and my ds is tall and strong.  But fortunately when my DH traveled our son was often quite good.  If he was unwell he would just isolate himself and I didn't interact with him that much so things were easier.  

 

I also remember watching PBS's show on Einstein's wife.  Einstein had a son who was mentally ill and after he left his wife she was left alone to care for him.  Apparently he raged and she had a heart attack that killed her.  When I heard that I started bawling my eyes out.  By the time I was watching this we were beyond the frightening rages that our son would have frequently.  Clearly the emotions that I have had from all those years are still there because I couldn't stop crying.

 

BTW, one thing that we did was we "rage proofed" our house.  We removed any heavy object or item that could be used in a rage do to damage.  Vases were cleared out.  Heavy objects like baseball bats were non-existant.  Counters were left clear and empty.  Our son still managed to break a lot of chairs, dent walls (a winter squash did the worst damage), and destroy objects.  But we did our best to minimize the chances that he would do something really bad.

 

Jistac

CAM Board Moderator

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Response (55.1.)...  by  - 2008-03-29 21:38:56

I read that problems arising from Vit E relate to synthetic variety only.  http://www.naturalnews.com/002352.html  This is the quick and dirty google reference, but I am sure I initially read about it somewhere else.

 

R

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Response (56.)...  by kalee - 2008-04-11 14:00:28

Herbal Science International, Inc. Recalls Twelve Dietary Herbal Supplements Nationwide Because of Possible Health Risk Associated with Ephedra, Aristolochic Acid and Human Placenta (April 10)þ

 

From: U.S. Food & Drug Administration (FDA) (fda@service.govdelivery.com) 

 

Herbal Science International, Inc. Recalls Twelve Dietary Herbal Supplements Nationwide Because of Possible Health Risk Associated with Ephedra, Aristolochic Acid and Human Placenta (April 10)

Fri, 11 Apr 2008 07:49:00 -0500

 

Herbal Science International, Inc. (AKA Jen-On Herbal Science International, Inc.) is recalling twelve dietary supplements that contain ephedra, aristolochic acid or human placenta because they may present a serious health hazard to consumers.

 

Sorry if the link doesn't come through. Go to FDA to read further.

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Response (57.)...  by blueyeliz@hotmail.com - 2008-04-12 09:47:48

This isn't really about CAM, but you know me here because I've been using EMPower for my ds10.

 

Last night I broke down and called 911 while he was punching a hole in a wall upstairs with a miniature baseball bat, and throwing things at me from the loft.

 

This morning I'm devastated.  Juvenile refused to take him because he is so young, so he went home with his dad (my ex).

 

Part of me knows I can't tolerate these behaviors without consequence.  But the other (huge) piece of me feels like I've betrayed him.  I know he has a brain disorder and it's his illness that provokes theses things.  And I want to be the person he can trust, and I'm miserable thinking i've broken something that can't be repared.

 

I'm also terrified I will be forced to go back to meds, when I know that he is better overall without them.

 

Liz

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Response (58.)...  by naominjw - 2008-04-12 09:57:34

The GP said that he thinks the blood & urine tests would be useless while she is on supplements.(He is not an expert, so if anyone else knows from experience, let me know)  But--she can't get off the supplements. Just to get off the CoQ10 would require weeks of increasing the Topamax before she could get off the CoQ10, and even then, she would be right back to where she was with just partial migraine control, and side-effects. Then... weeks more to again slowly taper back down from the Topamax. 

 

I guess the symptoms she has had (eyes, brain, endocrine system, sleep disorders, ataxia, migraines, fatigue) plus the response to supplements pretty much tells us the story.

 

Still... would love to know definitively.

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Response (58.1.)...  by brandonmsmom - 2008-04-12 10:19:38

They are not "bribes" LOL my pdoc calls it "nessecary positive behavior reinforcement therapy" :sillygrin:  

 

Brandons mom 

Amy

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Response (58.1.1.)...  by elialex - 2008-04-14 12:47:34

I'll have to remember that!  It sounds so much better than the "bribes, threats and extortion" used at our house.

 

Roxanne

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Response (59.)...  by waterdancer@charter.net - 2008-04-13 17:37:32

We have spent almost a year getting my daughter up to a theraputic dose of Lamictal and then tapering it dowm until we've eliminated it entirely. I know, I know, meds work differently on everyone, but I would urge caution with Lamicatal. It made our daughter much much worse and the pdocs refused to believe it was the drug itself causing the problem!

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Response (60.)...  by naominjw - 2008-04-13 17:37:32

My older daughter is an ultradian cycler, mixed states, etc. She's been on Lamictal a long time, but still cycling and tended to get manic. She tried all the atypical neuroleptics, and last one was Abilify. She got on maximum dose (30mg) which caused severe anxiety and severe akathisia, so then was on 3 meds to counteract the side-effects. 

 

So she got on E.M. power. She slowly slowly slowly got off the Abilify. Completely! It has been several months since she weaned completely off the Abilify and she is STILL stable! After 10 years!

 

She is still on the same dose Lamictal, which her psychiatrist does NOT want her to lower. The problem is that she is extremely, tired. Even if she sleeps 11 hours she is still tired. The pdoc says it is NOT from the Lamictal (like maybe she doesn't need as much so is overdosed?). He says that being tired from Lamictal is very rare. So instead, he sent her to a sleep doctor who wanted her to try Ambien to see if she sleeps more deeply and that will get rid of her daytime tiredness. 

 

She is still tired. Next will be a sleep study but that isn't scheduled yet. 

 

I guess I want to know... Is it true that this incredible fatigue she feels would NOT be from needing to lower the Lamictal? The pdoc says there is no harm in her staying at the same level of Lamictal she was on even if she is completely stable and maybe doesn't need as much... better to stay on it. 

 

OK.... Fine... stay on it.... but what about this fatigue?

 

Any ideas..... 

 

Oh, and by the way... the number of years we spent trying everything else BEFORE E.M. Power on her is pathetic, BUT... it was her choice (she'd now an adult). Her younger sister, on the other hand, has been on it for about 8 years.   :smile:

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Response (61.)...  by brendah895@aol.com - 2008-04-14 02:35:21

i agree, sounds like a good one.  does it happen to be julie at UIC ped mood disorder clinic?  we have traveled from florida to see her...she is wonderful.

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Response (62.)...  by mom2nicolas - 2008-04-14 02:35:21

Hello!  After a visit to a new pdoc yesterday, I have a LOT of questions!  He has ordered a slew of bloodwork for my 6 year old.  One of the tests requires me to order a Metabolic Panel Kit from a website and includes a urine screen and blood draw at a local lab.  It is testing:  Kryptopyrrole Urinary Quantitative, Copper serum, Zinc serum and Histamine whole blood. I understand the purpose of the test, but when I called my insurance company about this, they had no idea of what I was talking about.  The kit cost $170+, which I just can't afford and need my insurance to cover all tests(we have a lot of other health related costs with him as well.)  My question is:  has anyone heard of this/done this and can the doctor just order the individual tests from the lab instead othis kit?  That was the suggestion of the lab when I phoned them.  The website we were referred to to purchase the kit was www.pyroluriatesting.com.

 

We are excited to be exploring this route of treatment, but I am skeptical of any medical test I order off the internet that my insurance company doesn't recognize!

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Response (63.)...  by crockower@aol.com - 2008-04-14 07:49:58

Thank you for the positive uplifting message.  What a great way to start monday.

 

My son is 8.  We went through a lot of the same med trials you did but not with much luck either.  Ended up using a biomed approach with

much success.  However it is a shoe box full of vits. in the am and pm.  But we'll take that over instability any day!  

 

My question for you is:  How is your son doing in school?  Is he in mainstream; inclusion; self-contained; or private school?

 

The reason I ask is bc my son is in a public special school (BOCES) for kids classified ED (Emotional disability).  It's a rough school, my son hates it and so do I.  With his new found stability I can push for "least restrictive" and get a little more towards mainstream which is our ultimate goal.  There are so few kids in my district like ours I was wondering what your experiences have been.

 

Thanks, Christy

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Response (63.1.)...  by blueyeliz@hotmail.com - 2008-04-14 21:17:42

Darryl, were these brands recommended by Hicks?  I always wonder how to pick supplements, and how to know which are good.  Have you ever used http://www.consumerlab.com/?

Liz

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Response (64.)...  by zbarbuff@vcn.com - 2008-04-14 12:47:34

Hi all! I thought I posted this yesterday but I don't see it. Sorry if this is a repeat. Our DD is 4 yrs old. She has a recent DX of BP. I knew this would be the case as we have 3 other kids who also have BP as well as my husband. We have 7 kids. My problem...she refuses to take the Emp powder. I've tried everything I know to try. I'll start to have some success and then she balks. I am worn out fighting her on this. My husband wants to just switch her to meds because he thinks that would be a lot easier. I REALLY want to try this and give it a chance to work. I understand that it is easier and more rapidly successful if the person has not been on meds. previously.Any suggestions? p.s. at this point I think she has more fight in her than I do.

 

Thanks,

Terri

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Response (64.1.)...  by  - 2008-04-14 23:51:32

http://well.blogs.nytimes.com/2008/04/12/will-a-9-year-old-change-the-va...

 

This adds some interesting aspects to the subject.

 

Rebecca

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Response (65.)...  by naominjw - 2008-04-14 23:51:32

Is there a list of which tests should be done to ascertain mitochondrial dysfunction? I read on the Defeat Autism Now! about doctors ordering diagnostic tests that might yield signs of it. An example was an organic acid test (urine or blood) elevated adipic and suberic acids meaning that mitochondrial ability to extract energy from fat molecules is hindered. It also mentioned a urine test for a methylmalonic acid (MMA). 

 

I am still waiting for my books on autism to arrive... I suppose lists will be in there. But in the meantime... Two questions: 

 

b 1- Is there a list of tests online specifically for mitochondrial function? 

 

b 2- Will the tests show anything if the person is already on supplements that can help mitochondrial dyfunction?

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Response (66.)...  by nschiman - 2008-04-15 11:20:12

As you know, The Balanced Mind Foundation has been working hard to provide our members with a better, more user friendly and versitile platform for our message boards and support groups. This Friday we will be moving to our new home. This will require that we close the message boards for several hours so that we can move over active discussion threads. 

 

Archived discussions will all be moved over as well and housed in a folder so that you will have access to them just as you've had on this platform. 

 

We apologize for any inconvenience this may cause but are confident that the short interruption will be well worth it and that you will enjoy the new features of our message boards. 

 

If you have any questions or concerns, please feel free to email me. 

 

Nanci Schiman, MSW 

The Balanced Mind Foundation Program Coordinator 

nschiman@thebalancedmind.org

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Response (67.)...  by brendah895@aol.com - 2008-04-16 06:01:00

my son was diagnosed at age 5 but we did not treat since his behaviors were not completely out of the norm for his age.  treatment started at age 6.5 and after a lot of time, medication trials, travel and $ we were at our wits end.  he at 9 was institutionalized for 2 days for uncontrollable agression/anger at home yet in the facility he didn't have any problems. and didn't seem to care that he was even there in that barren place.

 

he was sent home on lithium (after trying lamictal, abilify, risperdal, seroquel, trileptal and wellbutrin, concerta).  he became toxic twice requiring subsequent ED visits not covered by my healht insurance because he wouldn't turn 9 for 2 more weeks and had to go out of network.  i am a nurse who was very careful but sufficient hydration is not easy during august in florida so lithium was too difficult to control.  

 

we finally took him off all meds.  gave him a couple of weeks and then started him on "country life Omega 3 Mood" 1 cap in the am and one in the PM. had tried omegas before and this is the only one that has worked.  the epa/dha ratios are right for him.  i am giving an extra in the am right now during the spring.

a good multivitamin is always a good thing.  we use michaels for pre-teen boys.  it has additional herbs that are good for prostate, attention etc.

occasionally melatonin sublingual 3mg if he is having trouble sleeping (maybe for a week to get him back on track)

 

most importantly is the carb cravings.  we have found that by using oregano oil capsules (we use Gaia Herbs) 1 twice daily for 3 months the first time then when they come back we only do it for a month since i can recognize signs right away.  i have found NO cookies, crackers or dry cereal hidden in his room for over 6 months!  

most recently we were able to have him do a yeast cleanse  but your child needs to be ok with swallowing a lot of pills.  it is 6 caps/day in the am for about 2 weeks.  i did this with dylan and he was back to normal the next day.  there were no obvious side effects of this "cleanse" ie no nausea/vomiting/diarrhea/itching etc that you hear of when people say they are doing a "cleanse". i am going to try probiotics daily now to see if we can break the cycle and not have to do anymore.  if it works, i'll post in a few months.

traditional medicine: 

he is now on risperdal 1mg at nigt (down from 1.5 twice daily) and strattera 40 mg (was on concerta 36 or 54 at some point).

 

I just wanted to put this out so that it may help someone...i truly have a new son and his younger sister and brother asked me why he isn't so mean to them anymore.(the kids are very close in age)  he is also passing in school.  

 

he still struggles but is able to get out of a frustrating situation and pull himself together within 5 minutes or less which is down from hours last summer. you couldn't get me to give up the risperdal or strattera but i am glad that i was able to help him with some of his other challenges using vitamin therapy.  it has significantly lessened his cognitive dulling.

 

good luck to all!

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Response (67.1.)...  by jistac - 2008-04-16 06:01:00

Chirsty,

We have found that finding the RIGHT school can be essential in keeping our son stable.  Even if the treatment (traditional meds or alternative) is perfect because stress can and will trigger breakthrough cycling.

 

I would defintely push to have your son removed from his current environment and placed in a setting that is more appropriate for his needs.

 

Jistac

CAM Board Moderator

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Response (68.)...  by nschiman - 2008-04-18 08:15:53

Our message boards are closed for a few hours today as we transition to our new platform. We apologize for the inconvenience and look forward to sharing our boards with you shortly in our new home! 

 

Warm regards, 

FOLDER TITLE: Comp. and Alternative Medications Active Discussions Archives

 

DISCUSSION: Comp. and Alternative Medications - Active Discussions Archive  2008-04-18 10:53:30   2008-04-18 10:53:30

 

 

 

RESPONSES:

 

Response (1.)...  by dad-wi - 2008-03-10 16:59:54

Hi drisme,

That was my approach. This was an explanation I got from our DAN dr's office when I was looking:

""Bipolar disorder is from methylation issues with neurotransmitters and specific areas of the brain not functioning, complicated by immune and DIET and nutritional problems."

This explanation is, in a nutshell, the direction Dr. Hicks will take with your son. Testing will focus on neurotransmitters, detoxification, immune status, digestion and absorption, and cellular energy. Treatment is then customized to test results, including dietary modifications, supplementation, and vibrational (homeopathic) remedies. 

As far as success is concerned; all of our patients make positive progress. The degree of success is directly correlated with compliance and PMA (positive mental attitude)!"

 

I think the issue that you are wrestling with is one of treatment philosophies. A pdoc's tools are generally meds targeting and manipulating neurotransmitter imbalances; an integrative or holistic practitioner is going to look at the same neurotransmitter variances, and use supplements to correct or modify problems that are interfering with the neurotransmitter metabolism, and ultimately resolve the neurotransmitter imbalances. It's taking an upstream approach at making things clearer downstream. Martha Herbert, a Harvard Phd specializing in working with autism described the brain as a 'downstream organ' because it depends on so many other systems to supply and feed it, so it can do it's job. Because the brain consumes so much, it seems to follow it will fail at executive functions if it's supply is cut short. Those deficiencies can come from many different issues, as he described he would look at.

 

After working with pdocs for 5 years, I started with our DAN. If you accept the nutrient philosophy, it follows that as things get nurtured, and there are sufficient neurotransmitters available, the need for meds may be diminished or eliminated. In my son, as we titrated up on supps, we found we had to lower meds when symptoms got worse. Over the past two years, we've removed his 5 med combo and have been using supps and diet only for 9 months. 

 

Darryl

Parent volunteer

dad to Levi, 9 using biomed 

 

I know your son is older, but you may want to read this to get an intro into 'biomed' 

http://www.thoughtfulhouse.org/exploring-the-biomedical-issues-of-autism...

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Response (2.)...  by jistac - 2008-03-10 22:32:37

drisme,

I hear your confusion about how to proceed.  It is very confusing indeed partly because the actual hard core science supporting nutritional interventions as possible treatments for mental health problems is both very good and very poor.  What we know based on numerous studies with a wide variety of populations as well as animal studies, is that nutrition can have a huge impact on how the brain functions and mental health, specifically mood and rage issues.

 

What we don't know is what the ideal nutrients are to give any one person, how much they need, whether certain nutrients given over time can have a negative or positive effect, what nutrients need other nutrients to be processed by the body, etc etc.....  We have bits and pieces of the story but we definitely don't have the whole story.  We don't even know how to tell if somebody has a deficiency in a certain nutrient, because we can only measure the quantity of nutrients in blood but that does not tell us whether those same nutrients are making it to nerve cells or to cells in the brain.  My own daughter had a zinc deficiency from a vegan diet but her blood indicated that her zinc levels were fine.  Nevertheless we knew she had this deficiency because her hair was falling out and she was eating a lot of soy protein isolate which interferes with zinc absorption.

 

Most of the doctors working with these types of treatment are using a combination of experience mixed with bits and pieces of scientific knowledge and data to form a treatment plan.  The best doctor for your son is somebody who has seen a lot of kids who are like him and who present with similar symptoms to his.  One thing that the folks at Truehope have going for them is that they have collected data on thousands of Bipolar individuals who are using their formula.  And their formula is based on a formula developed through trial and error on farm animals over many many years.  

 

Going with an alternative nutrient based approach requires a leap of faith.  Technically using medications/pharmaceuticals should also require a leap of faith, because faith in technology and the medical establishment is so strong in our culture that most people believe that they are getting a tested scientifically proven treatment when they give their child a prescription pill.  When in fact much of the same trial and error that goes into creating a formula like the Empower formula is used with pharmaceuticals as well.

 

Good Luck

We are here for you what ever path you choose.  

Jistac

CAM Board Moderator

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Response (3.)...  by jistac - 2008-03-12 21:17:47

Is your pdoc working with Truehope and knowledgeable about Empower?  I assume he is otherwise you would not of been using it for so long.  I am curious why he is not open to trying a lower dose of Lamictal?  It seems to me that everyone reacts differently to meds and although extreme exhaustion might not be a side effect of Lamictal for many people it could potentially be your daughter's unique reaction. 

 

Ambien is probably a bad idea because it will interact with the EMP and potentially destabilize your daughter. 

 

Has she had her thyroid tested?  The extreme exhaustion sounds very much like how thyroid problems presented in my kids.

 

Does she drink Caffeine or caffeinated drinks?

 

Maybe her EMP dose is too high or not high enough.  Have you talked to anyone at Truehope about this?

 

I hope you find some answers soon.

Good Luck

Jistac

CAM Board Moderator

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Response (4.)...  by trehouse@optonline.net - 2008-03-13 13:53:13

is also a common sign of depression. I'm not offering suggestions about what your child may need to take or not take, just a reminder that the fatigue may indicate some depression. You and your care providers can look at other symptoms and decide what the treatment options are.

 

Sam

Max, 6, lamictal/invega

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Response (5.)...  by elialex - 2008-03-13 21:15:34

It is worth noting that Lamictal is not, as far as I know, FDA approved for use in children to treat BP disorder.  Thus, if the pdoc argues that Empower does not have any scientific (read double blind placebo controlled) studies to back up its use, the same can be said for using Lamictal to treat children for BP.  The pdoc violates his own stated standards by prescribing this med for your daughter.

 

Please do not think I am saying that Lamictal is dangerous - our son used it and as far as pmeds, go it was one of the more benign. There is likely published evidence that suggests that Lamicatal is helpful to kids with BP and I'm sure the pdoc has seen kids in his/her practice who have benefited.  And you have seen your daughters benefit from Empower.  But in neither case is there sufficient evidence to win FDA approval at this time.  My point is that this is a political argument the pdoc is making as much as a scientific one.  

 

As for helping your daughter I have to agree with all the others here that the place to start is by lowering the Lamictal dosage.  It is certainly not unheard of for kids to use pmeds in combination with empower.  However, every other case I have read about has involved a lower than typical dose of the medication, often a dosage that would be considered sub-therapeutic by any typical standard.  A number of parents who post here and at the Truehope board use what would be considered a microdose of Risperdal or Lithium (drugs that are FDA approved to treat BP in kids) in combo with Empower.  

 

Perhaps consider dropping the lamicatal dose by 50 MG, which is a 17% reduction.  Wait a few days and see what happens. 

 

Another place to look for ideas is a TH document that lists limiting factors that affect the efficacy of Empower.  You may need to ask for a copy. Take a look at the list and see which apply to your daughters situation.  Perhaps this will lead to some more ideas.

 

Best of luck to you and your family!

 

Cliff

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Response (5.1.)...  by blueyeliz@hotmail.com - 2008-03-24 01:06:58

Hi Rebecca - good to see you are still hanging around the boards.  I know you mentioned pulling back a bit, but you always have good thoughts to share.

The choline is actually down from 2000mg about a month ago, and I'm in the process of bumping him back up a tad, thinking maybe I went too low.  

The salmon oil, you are right, is quite high.  As is often the case, we did a LOT of add-ons during the difficult pmeds to EMP transition, and we had to deal with Abilify withdrawal which is notorious of course.  The 4-8 weeks after abilify were awful.  I think slowly backing off the salmon oil is a good idea at this point.

Liz

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Response (6.)...  by stephanie - 2008-03-14 11:23:47

I guess I would look for a new pdoc if the one I was going to was not supporting the form of treatment I wanted to use.  That's just my opinion, of course.

 

We worried that our son's pdoc would not take EMPower seriously, and we were happily surprised when he seemed not only interested, but pleased with Robby's progress.  I'm sure your daughter could find another doc who would be supportive of her efforts.

 

Good luck!

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Response (6.1.)...  by blueyeliz@hotmail.com - 2008-03-24 01:13:22

Thanks Jistac.  I always find your replies to be very helpful on this board.

Of course, your post is both discouraging and hopeful.  Since my son isn't even 11 yet, I have quite a few years that will likely be very challenging as he grows, develops, and gets bathed in testosterone...which he's seemed to have an overdose of from day one (he's one of those ALL BOY, unlike my older son who is much less aggressive).

But that said, it's good to hear reassurance that someone has made it to the other side and not just survived - but is thriving.  I soooo need that hope.

Your post also, though, points out to me that I really don't have a medical doctor on board.  DS had a pdoc, and he is aware of what I'm doing with EMP (in fact he is still treating my older son with traditional pmeds...for now), but I wouldn't say he is "on board" - as in he's not really there to support issues.  So I guess I would be in a better position if I could find someone.  Sigh. The big names (like Popper) all seem to be east coast or cali, and I'm up in the corner of the US in the Pacific NW.  

Thanks again for the reply, it does help.

Liz

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Response (6.1.1.)...  by  - 2008-03-28 18:02:45

Hi Naomi,

 

Can you elaborate a bit more about the endocrine issues?  I'm interested in looking into this, but need a bit of direction as I am sure this line of pursuit is not common in my area.  Daughter has TSH > 1, and highish/out of wack cortisol, and lord knows what estrogen etc. issues.  As daughter's panic and mood issues went into high gear at puberty I'm sure hormones play a big role in her bp symptoms but no one has expressed any real interest in investigating that end of things.

 

Thanks for whatever info you can point me to.

 

Rebecca

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Response (7.)...  by naominjw - 2008-03-15 18:15:36

She lowered the Lamictal 3 days ago by less than 10%. (Actually by just 25mg -- 300mg down to 275mg). So, this is the 2nd full day, really, on the lower dose and she IS less fatigued. A little less, but noticeably less, fatigued. She says thank you from her as well. I know this is just day 2 of feeling better, but it is small but significant and that's the only change. I'll update more later. 

 

She says that if THIS was the reason for all her severe, bone-wrenching fatigue for MONTHS because the pdoc said no way was it the Lamictal, she is going to be ... um... disgruntled (not her actual word choice). I just laughed. At least she is feeling better now. She wants to lower it by another 25mg in another few days, then stay at that level for a couple weeks before lowering it more just to make sure she does not become unstable. She wants to go faster because she has gotten a glimpse of feeling better, but I told her to have patience. Better, in my opinion, to have this side-effect than to be unstable. She agreed. 

 

Thanks again. I'll update all in a couple weeks no matter which way it goes - better or worse.

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Response (7.1.)...  by  - 2008-03-24 11:58:44

Hi again Liz -

 

I remember you were looking for a DAN dr or naturopath last Dec. or so - did you ever find one?

 

I ask because I did manage to track one down and, although there has been a two way learning curve, he has identified some issues that the EMP did not address, a bit more in the Dad WI method, and she is doing pretty well with this.  I think the EMP alone could not address the heavy metal, food sensitivities and adrenal issues - and there are more things coming up on the testing agenda as each is dealt with in turn.

 

Just a thought.

 

Rebecca

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Response (7.1.1.)...  by  - 2008-03-28 20:17:50

make that TSH less than 1, I got my arrows mixed up!

 

R

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Response (7.2.)...  by jistac - 2008-03-24 22:49:55

Liz, 

We briefly were contemplating having to move back to Seattle.  That was 3 years ago and I was besides myself.  For one I really did not want to leave the East Coast and return to the rainy NW.  But I also didn't know what we would do about a pdoc.  I believe Popper told us at the time that he had somebody out there that he would/could refer us to.  

 

Fortunately we didn't end up having to move and my DH telecommutes to his job in Seattle.

 

I will try to remember to ask the next time I see him if he has the name of somebody out there.

 

Jistac

CAM Board Moderator

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Response (7.2.1.)...  by zbarbuff@vcn.com - 2008-04-01 16:56:21

Hi Ryan! We have started with EMP but we're not dealing with medication probs because the members of my family that are using it were not on medications previously. My suggestion would be to call support at true hope. I have found them to be very helpful and that's why they are there. To help with these questions. The number is right in front of me...1-888-878-3467.

Good luck,

Terri

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Response (7.2.1.1.)...  by nancyo - 2008-03-13 11:12:15

Can you tell me how many Empower your daughter is taking and what her Lamictal dose is?  The reason I ask is that my son is taking a low dose of Empower (3 per day) and is slowing increasing Lamictal because we were not able to get rid of his depression on Empower and other supplements alone.  

 

For what it's worth during my son's Pmed (Lamictal + Abilify + Focalin + Lexapro) reductions he became very tired - sleeping well past noon.  TH advised to do a pmed reduction and he improved quickly.  Course, I don't know which pmed caused the tiredness.  You could always cut Lamictal for a few days - week.  If it is an interaction your daughter should see an improvement quickly.

 

Nancy

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Response (8.)...  by  - 2008-03-23 19:47:30

I don't think I have any particular answers, and am sure you have been through the up and downs of changing EMP doses. For what it's worth, I suspect choline contributed to my own daughters instability when she was on EMP,  and wonder if you have tried lowering the dose. The amount of salmon/high EPA oils also strike me as possible contributors - that is a high dose of salmon oil IMO, and if high EPA is added on top of that,problems could arise.

 

You know what the history is, I don't, but my suggestion would be to try easing back on add-ons, one at a time, to see what happens, starting with choline, then fish oils.

 

Best,

 

Rebecca

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Response (8.1.)...  by tklyon@aol.com - 2008-03-24 22:27:42

My son did well on 1.25 mg of lithium for about 2 weeks, eventually had a toxic reaction to that, and has been off lithium for the second time now since December (the first time he was off, he was off 13 months_. It's hard to believe that such a low dose would create such a toxic reaction, but it did. 

 

Add microdoses carefully. Our whole fall was chasing stability with lithium microdoses, and it all was fleeting--EMPower and lithium clearly competed too much with each other. My son is doing better off lithium. Microdoses do not benefit everyone, and adding a microdose should be done with everything else being stable, so you can know the changes.

 

Tally

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Response (9.)...  by jistac - 2008-03-23 21:53:40

Hi Liz,

I hope our story helps.  5 years ago we felt like pioneers when we made the decision to work with Dr Popper and treat our son using EMP.  But we felt like we had no choice because pmeds seemed to be a disaster for our son.  And like you we initially saw remarkable changes.  Changes that we never saw with any of the meds that we tried.  But like you nothing seemed to last.  We seemed to bounce from one crisis to another and I feared that I might never be able to delete our son's doctors pager numbers from my cell phone.  There were many times when I came close to giving up on the EMP.  What kept me going was the same thought you are having, "Things would not necessarily be any different with pmeds."  And Dr Popper would confirm that this was indeed correct.  Having treated bipolar children for over 30 years he told us that during the years of rapid growth one is almost always playing catch-up.  He told us that in his experience using the vitamins clinically, the catch up with EMP seemed to be less dramatic and there were some kids who over time seemed to just stabilize on the vitamins and not need so much tweaking.  He never gave us any promises that our son would stabilize on the vitamins.  Nor did he minimize what we were going through.  He did however remind me that when we first started working with him he told us that these years (between 12 and 17) would be difficult regardless of what treatment course we chose.  And I suppose it was that reminder that kept me staying the course with the EMP rather than giving up and returning to meds.  

 

Liz, it has been a hell of a ride.  There were periods when I felt like I was always clutching a phone waiting for the doctor to return one of my pages.  We tweaked, we adjusted.  Our son struggled in school.  His struggles triggered his BP and made things worse.  We adjusted some more.  

 

I am not sure when things started to settle down exactly.  But some time this fall our son started to morph into a young man.  We stopped responding to crises and started being able to fine tune and tweak his meds.  We stopped living in perpetual fear of a rage and started to focus on helping him to grow up and develop as a person.  Therapy played a huge role in our being able to achieve this.  But I also think it helped that his body stopped growing so rapidly and his metabolism stopped constantly shifting.  And maturity also has played a role.  

 

Now if you have read other posts of mine you are aware that I have an older daughter who developed adult-onset BP her senior year of HS.  Initially before she was even dx as BP we tried to get her to take the vitamins to help her with what we thought was PMS.  She took them sporadically but enough so they must of kept the BP somewhat dampened.  But in January of her Freshman year in college she decided to stop taking the vitamins and she had a classic BP cycle two weeks after stopping taking them because she felt they were not doing her any good.  Our pdoc gave her a choice...work to tweak the vitamins to deal with the symptoms she was complaining of before stopping the vitamins or use traditional pmeds.  She chose to use traditional pmeds.  She wanted things simple.  It was her choice.  But even with traditional meds it took almost 9 months (as a young adult) to get her dosings right and for her to be stable.  

 

I hope that helps you with your doubts and struggles now.  I wish I could say that it will get easier sooner rather than later.  But hopefully with time things will indeed settle down.  But it may not occur within months.  It might be years instead before you see real solid stability.

 

Jistac

Cam Board Moderator

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Response (10.)...  by triplelatte - 2008-03-24 14:32:07

Anyone have experience using acupuncture to treat bipolar either in part or as a whole?

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Response (10.1.)...  by jistac - 2008-03-28 22:23:18

Rebecca has she ever had her calcium and parathyroid hormone tested.

 

Parathyroid problems have definitely been linked to mood disorders.

 

Also has she ever been tested or evaluated for polycystic ovarian disease.  This also presents with symptoms similar to BP

 

Jistac

CAM Board Moderator

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Response (10.1.1.)...  by  - 2008-04-03 20:37:21

Hi Terri,

 

The amount of Vit A that a full loading dose of EMP (just over, at 16 capsules a day) would give is 6,144 IU, which is below the recommended upper limit of 10,000 IU

 

http://dietary-supplements.info.nih.gov/factsheets/vitamina.asp#h9

 

(this is from a government website, so should be completely ok with the County Dr.)

 

It could be that the county Dr. is mixing up IU (micro grams) and g (grams).

 

My own daughter's EX dr. had the same ignorance based concerns, got her all upset, and had her blood tested and all was completely normal.

 

Does your son have his own Dr. that you can talk to and get his ok for the EMP?

 

Good luck,

 

Rebecca

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Response (11.)...  by triplelatte - 2008-03-24 14:32:07

I just found a few older posts on the issue - about the possibility of it activating symptoms in children. So...I will not be going that route:)

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Response (11.1.)...  by  - 2008-03-28 23:05:23

Jistac,

 

I doubt it.  She is MD resistant now ; )

 

I'm trying to get an idea of what even to look for, or what comprehensive test panel we should be seeking for her.  The pdoc is not looking in this direction at all; I doubt she has POD as she is not overweight, or hirsute, and has low blood pressure. Pdoc isn't looking at thyroid now at all, as TSH is so low, but still, I think the whole system should be looked into, if only to rule this kind of thing out (and since cortisol is out of wack, something is amiss).

 

Typical calcium levels have likely been tested, these kind of things things always come back in normal range; parathyroid - I'm sure not. I get copies now, didn't in past, too trusting...

 

Gosh, we should work up a comprehensive test sheet (and labs that do the tests if they are CAM, not normal MD stuff) ourselves and put it next to the 2005 treatment guidelines, I know this idea is not new...But in our experience, if you don't ask you don't get, but if you don't know what to ask for - Catch 22..

 

Rebecca

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Response (12.)...  by stephanie - 2008-03-24 14:38:45

My son Robby is 11 and has been on EMPower plus for two months.  He initially responded beautifully, and still is much better overall, but we do occasionally see a rage and a temper tantrum.  They don't tend to last as long, fortunately, but they do still occur.  I just spoke with a Truehope rep who suggested fish oil, 3000 mgs a day.  I saw that your son takes 5000 mgs.  He also has attention/focus issues.  I am fully expecting to have to tweak things as he goes through adolescence/puberty.  It's encouraging, yet discouraging at the same time to see that others are experiencing the same things we are!  

 

I hope your son improves - hang in there!

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Response (12.1.)...  by jistac - 2008-03-29 07:12:34

The girl I knew personally who had POD was not overweight at all but reasonably thin.  So I would be careful to make assumptions based on your daughter's weight.  

 

I have at various times written out all the tests that I feel that somebody ought to do or consider when BP is a potential diagnosis.  I did this for a mom who has a young child.  Funny some people reacted strongly to that.  Then again it is so hard to get a doctor to really "Think" and "Think" outside of the box these days.  My son just saw a urologist and I was so frustrated that this doctor was so quick to come to conclusions about our son.  The key is finding a doctor who is willing to ask a ZILLION questions and to really think about the problem you are presenting them.  But unfortunately that is not the way they are taught in Medical school or the way medical practices are run.

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Response (13.)...  by lydiar@uhs.umass.edu - 2008-03-24 22:04:50

We have great,really perfect, stability in our now 14 year old who started EMPower at age 9. It got this solid and sustained after increasing the EMPower to 18 and adding in 6 mg lithium carbonate and .1 risperdal (.05 am and pm) Some kids need more than the EMPower alone  but you have to add in microdosed meds carefully. I think a few mgs of lithium could benefit almost anyone on EMPower. The docs I know do not use the orotate. We also removed fish oil completely as we realized it was activating. good luck

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Response (14.)...  by nancyo - 2008-03-25 18:33:45

I think our insurance (Blue Cross/Blue Shield) paid for some of these tests through the Great Plains Laboratory.  What you might do is find out from your insurance company what laboratories that they work with (preferred providers?) and then call the laboratories to see if they do these tests.

 

I'm impressed that a pdoc would order these tests.  That is very unusual.  You are very lucky to have found this doctor.  My son's DAN doctor ordered these for him.

 

Nancy

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Response (15.)...  by romiaary - 2008-03-25 20:10:22

We did the kryptopyrrole/pyroluria test through that web site. My sons test was negative, but it gave us something to scratch off our list.  There are only a handful of labs in the world,and I do mean in the world, that do that test.  The insurance companies do not cover it because it is not recognized as a true problem in most of the medical world.  The people who I have read about who have tested positive and been treated for Pyroluria seem to believe it is very real and seem to have positive results.  If I 'm not mistaken, it's been a while, there are problems with B6, zinc, and a few other levels that cause this problem.  Look the condition up on the internet and see if it sounds like a possibility.  The test is easy and they were very professional.  At the time that we did the kryptopyrrole test, the Great Plains Lab was not offering it.  Things may have changed. 

   I've inquired about the histamine test to my doc and he again said very few labs do this testing and he wasn't sure of any local ones here.  My son definitely has histamine level problems.   Again, it is possible that this test is not recognized as useful by the traditional medical community. 

   Its sounds to me as if you are using an alternative doc, or one who believes in things outside of the box.  In my opinion, that can be a very good thing.  My family has had  a lot of success with supplements  and traditional meds mixed.  We are packing up and traveling 12 hours each way just to see a doc like that next month. I don't even know what the bill is going to be, we are trying to save like crazy because these out of the box tests don't seem to ever be covered. You are lucky to have one close by. I'm not so sure that I helped you, but this is what I know about these tests.

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Response (15.1.)...  by tklyon@aol.com - 2008-03-28 22:02:28

My son had a bad day today after lots of exercise. He is stable on EMPower, and he has been using it for three years. He is just starting to run and play during recess, and he is running hard. He had about a 4 hour med release. After it was done, I asked him if he could tell what medication it seemed to be. He said, "This one felt like Abilify." His behavior was exactly like it was on Abilify. 

 

Even though lithium isn't supposed to store in the body like the other medications, a couple weeks ago, my son was ill. He lost some weight. He was lying on the couch and all of a sudden, he said, "Mom, get me something quick to pull out lithium. I'm having a huge lithium release and it's so bad I can taste it in my mouth." I gave a huge dose of whey protein, and he was calm within 1/2 hour with the taste gone (he had his last microdose of lithium in December).

 

The withdrawal processes are tough and complex. In our experience, TH has been right on with their understanding of it. Ask TH about what they know about Abilify withdrawal because I have seen several students go through the process Nancy describes. My son withdrew from Abilify and his processes were nearly identical in descriptions and time frame to her son's. Nancy's story was partly what gave me hope that he could get through it. After the "kickback", my son watched tv for nearly 8 weeks straight, 16 hours a day. He didn't really remember what he watched. And, then, little by little, he showed signs of coming to life again.

 

Tally

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Response (16.)...  by jistac - 2008-03-26 06:47:01

Previous posters are correct, insurance often will not cover many tests done by labs like "Great Plains Laboratory" because many of these tests have not been shown to accurate or we do not yet have the information needed to respond to the information in those tests.  I can't speak to the particular tests you are asking about but I do know that one controversial test is the test for Candida.  An unusually high number of patients who get this test through labs like these come back with high Candida.  But Candida is something that is just around and we can not yet say for sure if it is always a sign of infection or illness.  Typical treatment involves giving pro-biotics, which were believed to be harmless even in excess.  But recent research showed that this is not always the case.  Of course one could easily make a counter argument that we use pharmaceuticals without knowing their full impact and insurance covers their use.  And you would be correct and then we just find ourselves in circles moaning about the state of modern medicine.

 

But I digress.....what you can do is talk to your doctor who sounds open for alternatives and ask him if given the things he wants to look at if there was any way he could explore those things by using only those tests covered by a standard lab and your insurance.  

 

Another possibility is to petition the insurance company to cover such tests.  Some people find that if they appeal and initial rejection they can indeed make headway with the insurance companies on issues like this.  But so much depends on the company and the individual situation.  

 

Good Luck

Jistac

CAM Board Moderator

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Response (17.)...  by mom2nicolas - 2008-03-26 09:58:08

Thank you to everyone for the very helpful feedback.  I have contacted Pyroliate testing about insurance issues and they have provided me with a sample invoice complete with dx codes, etc. that they claim has yielded great success with insurance reiumbursements.  Upon purchase, they generate the invoice for me and I would submit to my insurance.  My doc has mentioned they have had some success with this too.

 

Funny thing is -- I scheduled this appt. with this doc because of a change in insurance companies, thinking I was going to walk in, get a script refill and maybe add an ADHD med.  What I walked out with was a totally new perspective on how to help my son and I am very excited.  (scared, but excited!).  I had not really considered this route for him, but things always happen for a reason.  No other doc had ever picked up on the fact that my son has severe eczema, severe allergies and prone to infection as correlating to his mental health needs.  I'm very excited that we may be close to treating the cause of his issues rather than the just the symptoms.  

 

I'll be back on this board a lot in the coming weeks.  Thanks again for the feedback!

 

Jada

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Response (17.1.)...  by nancyo - 2008-03-30 18:51:35

Tally,

 

It's really amazing that your son can tell which old medication is coming out!  It sounds like his is doing really well.  I'm very happy for you.

 

Nancy

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Response (17.1.1.)...  by mom2nicolas - 2008-04-10 20:04:02

Something I found interested from our psychologist was her belief that kids with mental health issues learn all behaviors as a result of their illness.  She explained to me that while the child may know the difference between right and wrong, they most likely learned the negative behavior to cope with whatever they couldn't deal with during a period of instability.  Then, during periods of stability, they still resort to those negative behaviors because they are in their "inventory" of coping skills.  They have a hard time sorting them out, even in stability. I took from it that if my kid hadn't had to deal with the instability/mental illness, they probably wouldn't have ever learned the negative coping skills or added them to his "inventory." 

 

Just another perspective, I guess.

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Response (18.)...  by jistac - 2008-03-27 17:14:31

My husband had to stop Empower before surgery this fall.  He had been on in long enough that stopping really didn't make that much of a difference.  Interestingly he found that General Anesthesia did WONDERS for his mood.  He said it felt like a ReBOOT.  He then asked a neurosurgeon friend of ours and our pdoc who both confirmed what he was experiencing.  People often respond very well to General Anesthesia.  Obviously there are many reasons why this has not been explored as a treatment for BP.  But it has been discussed frequently according to our pdoc.

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Response (18.1.)...  by jistac - 2008-04-01 06:36:35

Tally,

When your son was growing rapidly in early adolescence any lasting stability seemed to allude us.  It seemed like any stress or trigger would result in him becoming unglued.  I honestly could not ever imagine him doing the things that his older sister was doing, such as driving a car, working at a job, being independent.  I sometimes wondered why were fighting so hard to get this kid stable when many days we seemed to make no progress at all.  But the conclusion we always came to was we had no choice.  Giving up wasn't an option.  I am glad we persisted.  17 is very different than 12, 13, 14, 15 and 16 and the boy who struggled to stay sane is gradually morphing into a very sane young adult.  (With some minor bouts of insanity when it comes to politics but we won't go there....I think he is just doing that to rebel against his liberal parents).

 

So keep plugging away.  You will get your reward.  I just wish it wasn't so much work to get there.

Jistac

CAM Board Moderator

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Response (19.)...  by momtokgb - 2008-03-27 17:14:31

My 16 year old dd has impacted wisdom teeth which need to be removed under general anesthesia.  The Dr. said that we must stop any herbal supplements now for her 4/25 surgery.  This includes anything with ginko biloba, We are halfway on our Empower trip.  She is on presc meds plus 4 EmpowerPlus caps per day.  What will stopping EmpowerPlus cold turkey do?

 

Barbara

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Response (19.1.)...  by tklyon@aol.com - 2008-04-01 13:55:00

Thanks for sharing this perspective. I really needed to read these thoughts right now.  I have been on a real caregiver's low right now in why I am working so hard when there seems to be such minimal progress. I know there is progress, but none of it appears to be sustainable. So, I hope that I will be able to say the same in a few years. We can't even leave him alone yet unless the conditions are ideal and we won't be gone for more than a few minutes.

 

Interesting twist on rebellion there :-). 

 

Tally

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Response (19.1.1.)...  by naominjw - 2008-03-13 09:39:45

> Taking Empower and pmeds together does make them tired!!! My son did this and was tired until we got him off of pmeds. Then, the tiredness went away. 

 

I suspected this. 

 

> Your doc can talk to Truehope if he doesn't believe you. They will tell him this is true.

 

He does not "believe in" any supplement except Fish Oil. Even when myyounger daughter got so much better on EMPower he asked what had changed. We told him. He asked, "No, REALLY" - Like what in her environment did we change. We shrugged. And dropped it. 

 

My younger daughter IS one of the few who IS still on pmeds along with EMPoawer. 

 

It has taken us years to unravel what was going on with her. Her case is too complex for this response. 

 

Anyway, the pdoc is slowly now coming around, especially after seeing my older daughter now better. But he also knows the younger one IS still on pmeds. The two cases are not the same. The younger one still has unstable hormone levels, for one thing, and we have just started addressing intestinal malabsorption issues. 

 

> Take care. Glad to hear she is doing well otherwise!!!!!!!!!!!!!

 

Me TOO!  HER TOO!!!  OMG!!!  I have not seen her this stable in almost a decade. Yay!

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Response (20.)...  by  - 2008-03-27 22:08:13

along with taurine.  They are both supposed to lower cortisol (stress hormone) and glutamate (neurotransmitter associated with anxiety and depression) and probably other things...They seem to be helping, and no adverse effects noted.  I'm sorry though, I don't know her dosage.

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Response (21.)...  by jistac - 2008-03-28 08:03:06

We use it for anxiety.  It is always a bit subjective, but our gut told us that higher doses were not so good for our son.  When we went too high on the theanine it seemed to make our son worse not better.  But our son is complex and sometimes reading his reactions can be tricky. He takes 300mg 3x a day for a total of 900mg.  His anxiety is sort of through the roof and is his main problem these days.  He really doesn't have any issues with cycling, mania or depression.  

 

Hope that helps

Jistac

CAM Board Moderator

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Response (22.)...  by blueyeliz@hotmail.com - 2008-03-28 08:03:06

Has anyone here seen a bad reaction to theanine? TrueHope sometimes suggests it for anxiety or to help with sleep.  I can find no reference to any bad reactions on the truehope board.

Liz

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Response (23.)...  by rnsy8s - 2008-03-28 10:52:02

My 9 yr old BP son's Dan Dr. suggested taking Deplin w/ 4 EMP per day.  Anyone else "mixed" EMP with this?

 

He said up to 70% of people with mood disorders have trouble converting normal folic acid to the form your brain needs for it work effectively??

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Response (24.)...  by dad-wi - 2008-03-28 11:51:41

Hi Ryan, 

Just a disclaimer, I'm just another parent trying to figure this out, and not offering specific advice. My thoughts.. Technically, the meds should be cleared, based on the half lives, however, there're theories that if the body was not clearing them all along, what is not excreted may be stored, encapsulated, if you will. As nutrients are added, and the body becomes able, those stores are gradually pulled out. Chelating toxins like heavy metals is a similar process. The other factor, is that any intervention can apparently cause genes to express differently (turned on or off), whether meds or supplements. That changes a whole cascade of metabolic paths; it may take longer for the body to adjust to those changes than the clearance time of the meds involved. Kind of an inverse of the time it takes to get to therapeutic levels.  We saw aggitiation and hyperactivity when more was pulled than the body could eliminate. Backing off gives things a chance to catch up. We added things like artichoke, SOD, and calcium d-glucarate to help with that process. It also seemed to help adding in amino acids.  Ubiquinol and pycnogenal are two antioxidants that can help as well.  

 

 I haven't used empower, but have often compared the amounts to what we take, both individual supps and another multi I take. I didn't get any indication of excess from our dr., though he did comment on some ingredients 'possibly' slowing things down. Those comments were based on metabolic testing indicating there wasn't a need for particular supps, and if added they could impede the uptake of the ones that were deficient. The impedance was more a concern than toxicity. For one, he wanted us to not supplement copper, due to a zinc issue. We also have amino acids compounded based on metabolic testing. There is always the potential that genetics could prevent some metabolic actions, and result in an excessive amount. I think boomom's daughter has an issue with some vitamins adding too much load on the liver. 

 

Deplin just came up on the med board if you do a seach. From reading on autism boards, which form of folate can be a factor. They have described this defect as the 'folate trap'. I believe Deplin and folinic acid are the same: L-5-methyltetrahydrofolate. Not sure about the BBB aspect, but it affects the recycling of homocysteine back to methionine, critical to the methylation cycle. Our dr just switched Levi to folinic acid, taking 1000mcg, 2x/day. My understanding is that getting enough B12 is critical along with this. He gets a min. of 2 mg methylcobalamin. 

 

He also prefers cod liver oil- without a lot of clinical data, there is debate as to what ratio of EPA to DHA is better. Some research indicates DHA can be beneficial for younger children. Eventually, the body becomes able to better convert EPA to DHA. From reading parent reports, trialing seems to be in order. 

 

The books "Healing the new childhood epidemics", by Dr. Ken Bock, and "Changing the course of autism", by Dr. Bryan Jepson both have been helpful in understanding how these cycles work. 

 

Darryl 

Parent volunteer

dad to 9yo Levi, using supps and diet as treatment for his alphabet...

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Response (25.)...  by debbie_ma - 2008-03-28 12:12:25

Has anyone heard about/used Deplin?

 

http://www.deplin.com/

 

It’s folic acid in its most readily absorbable form and is capable of passing the blood-brain barrier.  The technical name for it is L-methylfolate (MTHF) and it’s available only by prescription and is classified as medical food (??).  It is being marketed as an augmentation to antidepressants to increase effectiveness of the medication.  My son’s therapist has been using it stand-alone to treat depression and has seen improvement in 15 of 15 patients.  I wonder, since it’s used to augment ADs, if it’s activating.  

 

I found these few anecdotal reports…

 

http://www.dr-bob.org/babble/20071225/msgs/803728.html

 

http://www.crazyboards.org/forums/index.php?showtopic=21108&mode=linear

 

http://dailystrength.org/c/Parents-of-Children-With-ADHD/forum/2303011-d...

 

Anyway, just passing the information along in case it’s helpful for anyone.

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Response (26.)...  by naominjw - 2008-03-28 12:32:43

My younger daughter is now 20, and has been on EM Power for 8 years. She did have an increase at some point, moving from pediatric dose to adult. 

 

It only HELPED her stability. It was not complete. It took many years for doctors and us to put together more of the puzzle. By then, she had multiple problems - including osteoporosis! She had intestinal malabsorption issues, and cannot have gluten, soy and more. She also has endocrine issues. In fact... it looks like what triggered off everything in the first place was the malabsorption & endocrine problems which were then treated with antidepressants then stimulants added... and you can guess the rest of the story.

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Response (27.)...  by naominjw - 2008-03-28 12:43:40

I also am only a parent. My daughter's pediatrician thought it was fine. Safe. Turned out to be a darn good thing she was put on it because it turned out she has problems both absorbing the nutrients as well as utilizing some of them. 

 

Because she ended up with osteoporosis, she has been under the care of a kidney and bone metabolism specialist. He also is fine with the EM Power. In fact, the only tweaking he did was with a different supplement for her bones - changed her calcium supplement. He determined this based on 24 hour urine testing and multiple blood tests. They CAN measure what's in the blood and what is being excreted in the urine, and know if anything is too much. So if there is really concern - let them TEST it!!!! I can't understand why my dog gets more comprehensive testing than my child used to get. 

 

Another "in fact"... the doctors ended up adding MORE to her regimen - like extra vitamin C, D, B5, and omega-3 fatty acids... and others, specifically targeting her needs.

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Response (28.)...  by nancyo - 2008-03-28 12:49:32

When you say 'agressive titration' what do you mean?  How fast did you increase the Empower and how fast did you wean your son off his pmeds?  If it has only been 2 weeks since stopping his pmeds it is very likely that he is still going through withdrawal, especially if one of them was Abilify.  Approximately 2 weeks after stopping Abilify (with a very slow weaning) my son became very manic.  He would shout out various things (printable and not), was very hyper and got into a lot of trouble in school.  He settled down after about a month but then became rather depressed for another 1-2 months before snapping out of it.  Truehope refers to this process as Abilify 'kickback'.  I think your DAN doctor underestimates the difficulty of weaning off pmeds. Many doctors (including pdocs) do not understand how difficult the process can be for some.  Our experience was that it was hard to tell what was effective until my son was past the primary withdrawal period.

 

My son's DAN doctor was quite comfortable with my son using Empower and in fact suggested it.  But it is not the same as taking individual supplements tailored to your son's chemistry based on various tests, like what dad-wi does.

 

Hope this helps somewhat.

 

Nancy

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Response (29.)...  by dad-wi - 2008-03-28 18:29:28

Read about the odor issue elsewhere... It may be the trigger that has your dr concerned. 

 

High doses (10 to 16 grams/day) of choline have been associated with a fishy body odor, vomiting, salivation, and increased sweating. The fishy body odor results from excessive production and excretion of trimethylamine, a metabolite of choline. Taking large doses of choline in the form of phosphatidylcholine (lecithin) does not generally result in fishy body odor, because its metabolism results in little trimethylamine. A dose of 7.5 grams of choline/day was found to have a slight blood pressure lowering (hypotensive) effect, which could result in dizziness or fainting. Choline magnesium trisalicylate at doses of 3 grams/day has resulted in impaired liver function, generalized itching, and ringing of the ears (tinnitus). However, it is likely that these effects were a result of the salicylate, rather than the choline in the preparation (4).

http://lpi.oregonstate.edu/infocenter/othernuts/choline/

 

Some other info at

 http://www.ghchealth.com/body-odor.html

http://www.ars.usda.gov/research/publications/Publications.htm?seq_no_11...

http://www.florahealth.com/flora/home/Canada/HealthInformation/Encyclope...

http://www.encyclopedia.com/doc/1G1-103194443.html

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Response (30.)...  by jistac - 2008-03-28 22:20:29

I have shown the EMP bottle to many doctors and scientists (a neurosurgeon, a gastroenterologist,an anethesiologist, pediatricians, internist and a molecular biologist) none of them has any concerns about the product or the quantity of vitamins.  BUT, that does not mean that it is safe or that there might not be some problem with them.  We really do not know a lot about why certain people seem to need extra nutrients (like Lithium) and why others do not.  We do not yet know why some people have trouble absorbing nutrients and others do not.  And we do not yet know how any one person will react to supplements, nor do we have any scientifically proven ways of determining how any one person will react to supplements.

 

Nor do we really have any data on the long term impact that these medications have on the body and whether or not they alter systems in the body that then take time to reset and readjust before they are normal again.  

 

I do know from my son's pdoc who has treated 100s of patients with EMP that he has not seen anyone have any problems with their Kidney.  Kidney issues are a concern for those taking Lithium.

 

I wish there were simple answers or that I could tell you the right thing to do.  So much depends on whether you personally like this DAN doctor and trust him and feel comfortable with him.  Then by all means follow his protocol and use him as a resource.  What you want is a doctor that is going to be there for you and is willing to work closely with you to find some protocol that will get your son stable. 

 

Good Luck and keep us posted.

Jistac

CAM board Moderator

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Response (30.1.)...  by zbarbuff@vcn.com - 2008-04-03 20:19:57

Thanks, Rebecca!

Terri

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Response (30.1.1.)...  by pumpkin - 2008-03-17 11:42:00

Glad it is helping. I would consider going faster to get her off of Lamictal. The sooner, the better she will feel, I believe!!!! The pmeds together w/the Empower ARE THE CAUSE of her fatigue. So, until she is off Lamictal, she will feel tired. Take care!

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Response (31.)...  by boomom - 2008-03-29 06:43:01

Just wanted to add my DD's experience as to the kidney question.

 

She was taking massive B vitamin supplements (not EMPower brand but others) and they were pure and at the doses the EMPower uses.  

 

It did shut her kidneys down to the point of them almost not functioning again.  Why?  I guess her system specifics.  However, it does happen.  I know of three other cases in the Cleveland area of the same thing.  Each child is different though.  Massive doses of fish oil made her have diarrhea to the point that she lost most nutrients she was intaking and couldn't get off the toilet.  Again, for her, it wasn't good.

 

She takes Lithium now and has no kidney issues thus far (it's been about 6 months) and is stable.  For her, the Lithium was what was needed.  (She's been on meds for 9 years - every one - and lithium is best for her.)

 

If EMPower works for you then you should continue it.  If it doesn't then you should tweak what you're doing.  Although I think that trialing something for 4 weeks isn't long enough to determine if it's going to work - meds or EMPower.  If he's psychotic then of course, you need to do something.  If not, you may want to give it more of a a trial period.  Good luck!

 

Peace,

Alyson

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Response (31.1.)...  by zbarbuff@vcn.com - 2008-04-03 21:15:09

Thanks ,Rebecca. We live in a very small town and all the doctors practice at the only clinic and are of like mind. They are all our doctors. It just depends who's on call when we go in. I will try to find that website and do more research.

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Response (31.2.)...  by jistac - 2008-04-04 06:42:01

Would it help if the pdoc's contacted somebody like Dr Charles W Popper?  Perhaps if they spoke to somebody with his reputation they would feel better about the treatment.  Have you printed out the journal articles from the Journal of Child and Adolescent psychiatry relating to EMP?  That also might convince them that you are using a legit treatment.

 

So sorry to hear about your troubles and hope things sort themselves out with your son soon.

 

BTW, please keep in mind that if your son is smoking even tiny amounts of Pot that the EMP might not be at all effective and could actually make things worse rather than better.  It is unfortunate but the EMP seems to have a dramatic affect on any substance that alters the brain chemistry and people taking EMP seem particularly sensitive to POT.  So that in some cases EMP is not the treatment of choice for a teen.

 

Jistac

CAM Board Moderator

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Response (32.)...  by blueyeliz@hotmail.com - 2008-03-29 07:12:34

It's been quite a while since I posted, and I probably don't have the energy to give the full update I should...but here's the basics.

10yo DS on EMP since Aug07, after a bit over a year of traditional pmeds, psychotic episodes, one disastrous phosp stay of 2.5 weeks (in my opinion CAUSED by pmed changes).  Anyway, started EMP in August, saw immediate improvement.  Still overall very much more stable on EMP.  School teachers/counselors are thrilled, say he is "a different child", with a sparkle in his eye and a smile.  This same boy was falling asleep in class regularly, practically a zombie and getting poor grades in everything a year ago.

So that's all the good news....here's the not so good.  We still struggle (and A LOT lately) with seemingly unexplainable rages and tantrums.  A week ago and again this weekend we are struggling with huge rage issues, defiance...nice example, he stood with a smug smile on his face friday night while pouring grape juice on my beige carpet and saying "I hope it stains."  So I tell repeat to myself over and over...it was no better on pmeds - worse....

And yet. 

I need to hear some good stories.  Have parents out there seen SUSTAINED stability?  It seems no matter what I do he will only stay stable for a few weeks if I'm lucky.  Although, as I said, it seems 100% focused at home these days, so at least they aren't getting ready to throw him out of school.

Guess I had more to say than I thought.  Encouragement, ideas, thoughts much appreciated.

Liz

10yoDS - 11 EMP / 1200 Choline / 500mg Taurine / 5000mg Salmon Oil / High EPA oil / Amino Acids PLUS 'microdosed' Risperdal @ .04mg twice daily & lithium orotate 15mg twice daily

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Response (33.)...  by jkwagneraz@qwest.net - 2008-03-30 02:41:33

You all may not notice this post since it's a bit old, but I've really benefitted from your discussion!  We're going gfcf on April 1 for the whole family, but especially targeting my 7yo son who has been diagnosed asperger's but looks very eobp also.  Darryl, thanks for the article.  I'm about 1/3 of the way through it, but very helpful for a newbie like me!

 

Kristi

Mom to Caleb 7, asperger's/eobp?

Ben 5, SPD

Zach, 3 so far just energetic and cuddly

Bekah, 1 princess power!

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Response (34.)...  by boomom - 2008-03-31 19:23:25

It's very possible they're urinating it out of their systems.  The body has a way of getting rid of what it doesn't need.  

 

High calcium is usually a result of a physiological response not to increases in intake.  

 

Peace,

Alyson

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Response (35.)...  by trehouse@optonline.net - 2008-04-01 07:48:42

If a person had high blood calcium, it would be extremely likely to interfere with cardiac functioning and they would wind up in the ER. Just like sodium, calcium has a huge role in muscle contraction and the heart is a muscle. 

The supplemental dose of calcium SHOULD NOT affect blood calcium levels, and you would not want it to. 

 

Sam

max, 6, lamictal/invega

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Response (35.1.)...  by pumpkin - 2008-03-13 07:36:11

Taking Empower and pmeds together does make them tired!!! My son did this and was tired until we got him off of pmeds. Then, the tiredness went away. Your pdoc is wrong about being a sleep problem. It is because she is on the Lamictal and Empower together. I would start lowering the Lamictal immediately. Your doc can talk to Truehope if he doesn't believe you. They will tell him this is true. Take care. Glad to hear she is doing well otherwise!!!!!!!!!!!!! :wink:

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Response (35.2.)...  by naominjw - 2008-03-13 09:30:28

Thank you for your response. I, also, am concerned about her thyroid. She does have hypothyroidism, and her GP (medicaid) will ONLY test TSH. That's how my younger daughter's low thyroid was missed for years because she actually has teriary (hypothalamic) hypothyroidism. Also, I worry about my older daughter's adrenals, and the fact that she may not be converting the T4 to T3 (that's true in the younger daughter's case). I have finally convinced my older daughter to see my younger daughter's GP - and I'll pay cash. I have no confidence in the medicaid doctors she has been seeing. 

 

She used to drink caffeine. She has quit. Hmmmm.... I wonder if this tiredness is actually just something she was self-treating with the caffiene, and it is now such an issue because she has quit the caffeine. 

 

Hmmm, Ambien can be destabilizing? Interacting with EMP? 

 

Actually, I had not discussed it with TrueHope. They had already said she needed to lower ALL the meds at the same time, not just Abilify. But her pdoc has been adament about not lowering her Lamictal. 

 

The only supplement he "believes in" is OmegaBrite because that has been proven in double-blind placebo controlled clinical trials, so he considers it mainstream, traditional medicine. He prescribes OmegaBrite and the new prescription fish oil so medicaid pays for that (see blog: http://itsnotmental.blogspot.com/2008/02/fish-oil-and-favorite-brands-of...).  

 

The soonest I could get my older daughter in to see the same GP as the younger daughter is actually not for several more weeks.  

 

Although her own GP tests TSH... like I said, I have no confidence. Perhaps you are right about the thyroid thing... and maybe it is the Lamictal. 

 

I am terrified to advise her to try lowering it herself.:chagrin:   ... maybe when she starts seeing the new GP....???

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Response (36.)...  by rnsy8s - 2008-04-01 16:56:21

I'm new to this and need some advice/support/help....

 

My 9 yr old BP son has been on EMP for 1 mo. Stopped all pmeds two weeks ago after aggressive titration. (abilify, lamictal, seroquel). He's now up to 10 EMP/day.

 

He's VERY activated and defiant. Choline-B seems to help a little. Also takes 1000 mg of Wild Salmon Oil per day.

 

We just saw a Dan Dr. yesterday. He said all the meds should be out of his system by now. Abilify has the longest half life and after two weeks it shouldn't be a factor anymore (not sure I believe him). He was not happy with EMP. Thought it was just an "overdose" of vitamins and was concerned with kidney problems from the 10 pills a day.

 

He suggested we use Deplin. It is a prescribed form of Folic Acid. It is supposed to be equivalent to taking 66 - 800 mg Folic Acid pills! He said 70% of people with mood disorders have trouble converting folic acid to l-methylfolate. Since this product is already "converted" it passes the blood-brain barrier much easier. So he suggested taking one Deplin in the morning, four EMP capsules and one Omegabrite in the morning.

 

So as a result of this appt I have a few questions:

 

1. Is there any concern of renal/kidney problems with EMP even though most of the ingredients are water soluble?

 

2. Anyone else heard of or tried Deplin?

 

3. I need some encouragement to make it through this very difficult time. Son is driving my wife and I to our LIMITS!!!

 

Thanks everyone...

 

- Ryan

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Response (37.)...  by jistac - 2008-04-02 06:29:38

Well I know that we had been working on getting our son stable this past summer and fall and our pdoc had us gradually remove the Choline.  When I tried to remove the Choline too fast we had MEGA problems (and we now believe that some of the school problems we had over the summer were related to our removal of Choline).  I found that we had to remove 70mg (or one compounded pill) every 2-3 weeks to pull it and not have problems.

 

Also he is on a lot of lithium for somebody on Empower.  The amount that most people who add lithium to EMP are on is in the 12-21 range.

 

And he is not on a loading dose of EMP (which I believe is 12 pills these days, but I could be wrong.  I know that we put our youngest child who is not technically diagnosed with BP but who started to have sleep and mood issues, on a preventative dose (which btw immediately took care of the sleep and mood issues) and he takes 12 pills a day.  When he takes less he starts to have the sleep problems and complains of "not feeling well".  

 

I also wonder how much the fish oil is contributing.  There are reports that fish oil can contribute to instability in some kids.  And I personally know that our pdoc doesn't use it along with EMP because it has just created too many problems.

 

So in the end your son might be getting too much or too little of any one thing.  It is difficult to know.  And figuring it out is tricky because it takes trial and error and observation and time.  You could increase the EMP, and that might in the end be the right dose but because increasing the EMP might mean that now your son is getting way too much choline and lithium and those things will need to be reduced before you see stability.  

 

Also remember that your son is indeed growing and changing right now (and for the next 7 years) so patience is going to be needed.  With some of these complex kids stability can take time as their bodies settle and heal.

 

I would definitely try to work with somebody at Truehope to see what you can do with this.

 

Jistac

CAM Board Moderator

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Response (37.1.)...  by naominjw - 2008-03-13 17:50:50

She is taking 11 pills per day. She is on maximum dose Lamictal - 300mg. 

 

She is going to cut back on the Lamictal just slightly and see how that goes. I just didn't want to do that without the pdoc being on board about this, but on the other hand....

 

THANK YOU!!!!!!

 

I'll give an update in a couple weeks and let you know how it goes.

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Response (38.)...  by blueyeliz@hotmail.com - 2008-04-02 06:29:38

My DS10yo has been on EMP since early Aug 07.  Off all pmeds by early October (trileptal last to go).  Destabilized during holidays.. could not find relief so added .04mg (yes thats POINT ZERO FOUR) risperdal.  Also taking lithium orotate, but only 1/8 of a 120mg tablet twice a day.  Tried to dc risperdal in february, and 2 weeks later huge issues (including one police report...don't ask).  So added .04mg back in.  Seemed to stabilize but then 3wks ago went WAY OFF RAILS.  At my wits end...refused to go to school 4 of 5 days last week - no violence necessarily but wants to do nothing but play video games for 12hrs daily.  Hardly speaks to me but when he does he is vicious and hateful.

Have reduced both choline (from 2000 to 1050) and salmon oil (from 5000 to 3000). Desperate. Taking all pills (one of the few things he is currently compliant with).

Please help!

Liz

DS10yo (11 EMP, 1050 Choline, 3000 Salmon oil, 6 amino gold daily, .04mg Risperdal, 30mg lithium orotate)

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Response (38.1.)...  by naominjw - 2008-03-13 17:21:14

Wonderfully, she isn't depressed. Oh - she has gotten depressed a thousand times before, but she is feeling in a pretty good state right now. A little fragile, but still not as fragile as before. She's the type that the least little depression and she curls up and cries and cries. She is trying to push through her fatigue. No crying. No curling up into a ball. Still out and about as much as she can. This fatigue feels very physical to her.

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Response (38.1.1.)...  by  - 2008-03-28 12:12:25

The same post was made on the meds board, and Dad Wi answered at some length, so you might want to check there.

 

Rebecca

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Response (38.1.1.1.)...  by jistac - 2008-03-30 07:07:11

I hope the GFCF diet works for your son.  I hear that when it works it is pretty dramatic and sometimes symptoms completely disappear.  

 

I wish it wasn't so confusing but since your kids are young hopefully in the next few years more might be learned on this subject.

 

Jistac

CAM Board Moderator

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Response (39.)...  by naominjw - 2008-04-02 17:15:50

I feel like we had to piecemeal together help from all over the place. 

 

We lucked out with a GP we got locally via word-of-mouth. He is so caring and will spend however much time is needed. And of course, our insurance won't pay for him. He has even gone to several continuing medical educations (CME) seminars in order to better help her. 

 

We got an endocrinologist half-way across the country via word-of-mouth on the Internet who at least got us looking at the right things. 

 

We found supplements that helped certain conditions via a doctor consultation from a non-profit organization, free to members - www.lef.org . They also let us know about integrative specialists in our area. 

 

The least helpful doctors of all turned out to be the endocrinologists and neurologists at our big university medical center. 

 

No one size fits all. Like the endocrinologist who helped my daughter I found because she had strange sleep episodes-probably not an issue most other children have. In trying to get at the source of those, he found some major keys to a host of problems my daughter was having. The testing was extensive, and I felt frustrated that our local endocrinologists had not run them. After all, as he pointed out - any doctor could have ordered them - they just don't.

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Response (39.1.)...  by pumpkin - 2008-03-13 19:21:21

I hate to do things w/out pdocs approval also, BUT, when he/she is not on board w/helping us, it is time to do things without him/her. Truehope can take the place of your doc in advising how much to lower at a time and how rapidly. I was surprised at how rapidly we dropped our meds. It worked better because then my son got his energy levels back once off all pmeds. My doctor did not feel comfortable w/Empower, so we did the transition w/out her. She welcomed us back when we failed at Empower and had to go back to pmeds. She did acknowledge that my son was doing well on them, however.

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Response (40.)...  by drisme666@aol.com - 2008-04-02 17:15:50

I have to tell you all I did some contacting/researching today..this is NOT easy at all. There is one doctor near me who is a naturopathic doctor, but he's no a pdoc and there is no mention of his experience w/mental illness on his web site. Some of the DAN docs I've contacted are regular fam. prac. with an "expertise" in testing for chem. imbalances and working w/ our own pdoc to supplement my son's currect meds ~ possibly lessen them as time passes. Is that the approach I'm supposed be looking for? I feel so lost in all of this. Any feedback would be appreciated.

drisme

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Response (41.)...  by naominjw - 2008-04-02 17:21:57

My daughter is under the care of a bone-metabolism specialist due to a diagnosis of opsteoporosis (just osteopenia now). Her blood calcium level was high BEFORE treatment only because she was leaching out calcium from her bones and NOT absorbing calcium!  

 

So, high blood calcium would actually be a bad sign. 

 

The bone specialist checks for a host of things in her urine, and has had us tweak supplements in order to lower some amounts. The kidneys excrete what the body does not need. If something is quite high in the urine it means they are working extra to get rid of an excess. Although she takes EM Power and a host of other supplements, the only thing he ever had us switch was her calcium supplement to one with lower magnesium.

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Response (42.)...  by romiaary - 2008-04-03 06:30:44

I just had a whole bunch of blood tests done in preparation for my kids seeing a  specialist in a few weeks.  They had calcium and magnesium serums done and they came back normal.  The weird thing is, they are on large doses of calcium/magnesium, the good expensive kind that I researched thoroughly.  They have been on it for about two years, it helps them tremendously with tics, but I expected it to be much higher than normal.  Does anyone know if this means that they do have a deficiency and the supplements are making up for it, or if its not staying in their system?

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Response (42.1.)...  by naominjw - 2008-03-14 16:05:51

Thanks, all of you. She's an aduly now. Its her decision. She went ahead and lowered the 300 mg Lamictal by just 25 mg. She already feels better which makes her scared that she'll be manic. I feel it is sad that every time she feels the least bit better she is scared. But I guess that is her way of coping and monitoring herself. 

 

She got severe akathisia and anxiety on the abilify. That's what made her decide to do as her little sister does and take the EM Power. The weird thing is that the akathisia persisted even after she got off the Abilify. Now, it just happens at random, but it still sometimes happens. 

 

So, her pdoc blames the EM Power for her akathisia. That's weird since she didn't have it until the abilify. 

 

I don't want to switch pdocs. I really do respect him. He cares about my kids. It isn't like we have a lot of choices. We've tried others that do medication management. This guy gives his time. 

 

With my younger daughter, I put her on the EM Power because it seemed like we didn't have much to lose. Wow. I am so grateful we tried it. She is still on psychotropics, but she was psychotic without the EM Power.

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Response (43.)...  by jistac - 2008-04-03 06:30:44

Have they ever had their parathyroid checked?  This is checked by a blood test that measures the hormone that the parathyroid excretes.  I forget what the test is called but I think it is PTH.

 

Parathyroid regulates calcium and we have four of them.  But we only need one of them.  Sometimes they get small growths on them that interrupt how they function and this then affects calcium levels in the blood.

 

PTH disease can in fact mimic the symptoms of Bipolar disorder.  So it is something to possibly pursue.  I don't know if it exists in children.  My dh had it and I have since heard about several other adults who have had it.  But I suppose it can't hurt to ask your doctor about it, right?

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Response (44.)...  by  - 2008-04-03 16:52:20

http://www.autism.com/

 

The idea is that these Dr.s are looking for, and addressing, biological causes for symptoms.  Disorders affecting the brain, not brain disorders.

 

Best, 

 

Rebecca

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Response (45.)...  by zbarbuff@vcn.com - 2008-04-03 20:19:25

Can someone help me to clarify something? Our 18 yr old BP son is in jail and the County Dr. won't okay him to take the EMP he started on Tues. He says that at the 15 caps a day dose, the level of vitamin A he would be getting would cause his bones to become brittle and he will develope osteoporosis by age 25. So he won't allow it. It's not a big deal now because he just started taking it, but if he does remain in jail, this would be an opportune time for him to take it since as a result of getting into trouble he has finally decided to make some healthy choices. They have convinced him that the EMP is harmful to him. I am steaming mad but I don't have the expertise to battle with them. Plus he's 18 so I don't have ANY influence now. I encouraged the doc to do some research on the true hope website...to no avail. He (son)is recently diagnosed and isn't on any other meds...he was self medicating with  pot.  Any help would be greatly appreciated.

 

Thanks,

Terri

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Response (45.1.)...  by nancyo - 2008-03-15 20:14:35

I'm glad she is feeling better.  I hope that she will continue to feel better and that the improvement is 'real'.  I looked at the prescribing information on Lamictal.  It lists sleepiness as a possible side effect.  Course it an unusual side effect, but EmPower magnifies the effects of pmeds, including the side effects (I assume).

 

Keep us posted on how your daughter is feeling.

 

Nancy

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Response (46.)...  by zbarbuff@vcn.com - 2008-04-04 06:42:01

Is DAN an abbreviation for a naturopathic Dr.? I looked it up in the online abbr. and couldn't find what it meant.

 

Thanks,

terri :chagrin:

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Response (47.)...  by brandonmsmom - 2008-04-06 08:00:22

I havent been too active here as things have begun to change with Brandon (more about that in a moment) but after working with a good pediatric neurologist we have found that we missed some things early on. 

 

Brandon has static encepholapathy and cerebral palsy (mixed type) she said the brain damage was likely present at birth. She said the good thing is it isn't degenerative but it is hard to treat medicinally since it isn't a chemical imbalance but a structural issue within the brain itself. It also explains what the EPS was when we transitioned form the meds to the EMP it was actually something that was there all along just controlled to a point by the meds.

 

So now we are back to square one to some degree. The neuro wants us to admit him to the university hospital newly formed pediatric neuro psych unit to look at his behaviors from a different point of view and do a full psych eval with the new dx's. His behavior has been more aggressive since his huge growth spurt and the neuro thinks pre puberty is an issue for him. We are also seeing alot of defiance and almost a coldness from him which is fairly unusual. 

 

Everyone here has been a great support for us while we where in the midst of some very tough times and I want you all to know how very much I appreciate it!

 

Brandons mom

Amy

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Response (48.)...  by jistac - 2008-04-06 08:00:22

Oh Amy,

Part of me is glad that you found the route cause to Brandon's difficult behavior.  Part of me is sad that it is something structural and difficult to treat.  But it sounds like you have a very good team put together who is going to work with you to get Brandon to the best place possible.  And it is good that you found all this out now.  This information will be invaluable to Brandon as he grows up because it will help him understand himself. 

 

One thing that your story proves is that we must be very very careful with BP that we don't assume that all children who exhibit BP behaviors have BP.  The behaviors are just a symptom and there can be so many route causes for this behavior, even some that we don't even know yet.  

 

Brandon is lucky to have a mom that didn't give up and who found the resources she did.  Please stay in touch and keep us posted.  I will be curious to hear what happens as Brandon goes through this evaluation period.

 

Jistac

CAM Board Moderator

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Response (48.1.)...  by naominjw - 2008-03-28 18:00:03

Jistac said:

> Typical treatment involves giving pro-biotics, which were believed to be harmless even in excess. But recent research showed that this is not always the case. 

 

????  The only study I ever read about it not being harmless was in an extremely unnatural situation that I would not count... when they tried, in pancreatitis cases, to put it directly (via a tube) into a part of the intestine that normally doesn't have much flora. Was there something besides that? That case was like us pouring anything (water, milk) into a place unnatural in our bodies then saying that thing was not harmless. I know that some headlines made it sound that way.

 

Was there something other than the the pancreatitis one that showed it might not be harmless? If so, I would very much like to pass that information on to someone I know studying dietetics.

 

Thanks, 

"Naomi"

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Response (49.)...  by elialex - 2008-04-07 10:53:42

How about bribes?  When our son was particularly unstable a small piece of candy made him feel like he got the best of us and we got the pills in him.  He really liked those little Andes candies. The bribes were only needed in the short term.  It seemed to help if I used my "camp counselor friendly" voice and asked him if he wouldn't like to come have his pills and a pick out a piece of candy too.  I realize the candy route is not necessarily the best but it worked.  Also he is an only child which makes bribing easier.  When he was very small I would buy a big box of markers and let him take one for every dose of whatever he was taking.  How sophisticated is your 4 yo?

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Response (49.1.)...  by jistac - 2008-03-26 15:56:40

I am a big believer that all sorts of avenues have be ruled out before giving an official dx of BP in young children.  Because young children don't express physical discomfort the way adults do and they can indeed express it through their behavior and being irritable and that can look like BP.

 

I am so glad that you found this pdoc and I hope he helps you help your son.  He sounds like a keeper.

 

Jistac

CAM Board Moderator

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Response (50.)...  by dad-wi - 2008-04-08 18:17:01

I had it bookmarked, but haven't investigated the site.

This looks like a place to start: 

http://www.umdf.org/site/c.dnJEKLNqFoG/b.3752521/

 

near the bottom of that page is another link:

"Click here for more information regarding diagnosis, tests, and laboratories that perform mitochondrial testing. "

 

I've read articles citing mitochondrial dysfunction as a factor in BP, and other chronic illnesses. It is another area that apparently can be helped thru nutritional supplements. Just like with other issues, I think there is a degree of severity involved. I can't say specifically what indicators our dr has used to identify which is due to what, other than to say that he indicated it as something we needed to support. 

 

 http://clinicaltrials.gov/ct/show/NCT00327756;jsessionid=8B264667F49AC5B2449ACA55973955AC?order=5

 

http://www.jbc.org/cgi/content/abstract/282/25/18057

 

http://www.sciencedirect.com/science?_ob=ArticleURL&_udi=B6T56-4JVK56D-3...

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Response (50.1.)...  by mom2nicolas - 2008-03-27 08:55:47

Just a little update on the metabolic panel kit.  I have spoke with reps from Pyroliate testing and my pdoc's nurse.  Apparently, the lab is able to do the blood screen without the kit, however, the kit also includes a urine screen.  Pdoc wants to see not only what levels are in his body, but what levels are being excreted as well.  I guess this helps him figure out how things get out of balance.  

 

People from Pyroliate testing have been very, very helpful and quick to respond to my emails.  

 

I guess I'm just that pesky, educated patient who does my homework before doing anything, as the pdoc's nurse said I was the first person to ever ask about having the panel done individually and not to have duplicated blood draws (1 from kit, 1 ordered by doc.)  Pdoc didn't even know that the kit included a blood draw.  

 

I feel like we are making progress and I feel so comfortable that the pdoc is allowing me to be an active decision maker in the whole process, rather than saying "do what I say because I said so!"

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Response (51.)...  by naominjw - 2008-04-08 20:05:55

Some strange things actually fit my daughter... but strange things fit so many other things as well. Bouts of ataxia (due to... migraines, med side-effects, sleep disorder...), multi-generational maternal inheritance of migraines, weird problems with eyes including night sudden loss of some color-vision ... but just in one eye, and we chalked it up to a weird permanent medication side-effect... and familial progressive night blindness... hypothyroid... and even hypoparathyroid which corrected itself but it probably was due to the osteoporosis. 

 

I read about cases of "schizophrenia" caused by mithocndrial genetic disorders.

 

What got me on this line of questioning is that simple CoQ10 has given my daughter back some of her life... she'd had such severe migraines. And CoQ10 is also given for mitochondrial dysfunction, and is being tested by NIMH.

 

I just wonder - since sometimes the ONLY symptoms are in the brain - why do they not test for this before diagnosing "mental illness"? No need to answer... that was a rhetorical question.

 

Thanks for the links. Very informative.

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Response (51.1.)...  by blueyeliz@hotmail.com - 2008-03-27 11:23:42

Wow, it sure sounds like you found a great pdoc tho, willing to look at these kinds of tests.  You don't happen to be in the puget sound area do you?  always hoping....

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Response (51.1.1.)...  by tklyon@aol.com - 2008-03-31 14:09:48

Nancy,

 

It is nice he can tell what is coming out when. This withdrawal process is so difficult for him. He is so high maintenance still on this--even nearly 2 years off everything but lithium. He is growing like crazy, though, and he is also losing fat in the process of that and/or because of increased physical activity. TH tells me that growth streaks dislodge all sorts of stuff. Of course, so does physical activity, which we are very happy to see.

 

I suppose my son is doing well overall. But, any med release leads to meanness at best with repetitive behaviors such as pestering the dogs, saying the word "Crickatoon" over and over again, using a growly voice, chewing holes in his shirt, etc. He still needs whey protein every 2 hours all day long, and sometimes, he needs activated charcoal to pull out the old meds because it is too much for the whey protein to handle at once. Honestly, now that he is the size of an adult, I am exhausted with the process.

 

But, we continue to see improvement over time in many ways. We just wish this withdrawal process would end. I suspect that my son is ultrasensitive to any residual medication.

 

Tally

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Response (51.1.1.1.)...  by naominjw - 2008-04-12 09:47:48

I completely agree with this. My younger daughter always had OCD-ish behavior (the doctor diagnosed it as "OCD" but to this day I am unsure, and she disagrees with the diagnosis (she'd grown-up now)) Anyway, her older sister, with adult-onset bipolar got that way as she became more stable. BOTH say the same thing - they got they way in order to cope with an internal life that they felt little control over. Although, my younger daughter adds the world was so chaotic and people did mean things... and this was her way to make things "right". But again - that goes back to her intense feelings.

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Response (52.)...  by dad-wi - 2008-04-08 21:45:07

We've been taking ubiquinol form of CoQ10

http://www.lef.org/newshop/top_products/004_coq10.htm

 

http://www.discount-vitamins-herbs.net/coq10_ubiquinol.htm

CoQ10 plays a crucial role in the production of cellular ATP (adenosine triphosphate), which provides energy to all cell functions. (role of mitochondria)

 

Coenzyme Q10 is an antioxidant that has great importance as a free radical scavenger. CoQ10 protects the stability of the cell membrane, protects DNA from free radical induced oxidative damage, and helps recycle Vitamin E.

 

Darryl

Parent volunteer

 

if you search "oxidative stress" on the boards or archives, there is more info about the damage free radicals can do, and the benefits of antioxidants.

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Response (52.1.)...  by mom2nicolas - 2008-03-27 20:41:48

We are in the Indianapolis, IN area.  I scheduled this appt. by picking the name off my insurance company's approved providers.  I had no idea what his approach was when I scheduled-- he's part of a large mental health clinic and I thought I would have good luck with getting pdoc/therapist in one stop.  Funny how things work, huh?

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Response (53.)...  by naominjw - 2008-04-08 23:51:03

Yep. That's what my daughter takes now (from LEF), but before that she took LEF's ubiquinone - super absorbable. That worked great, too. 

 

But she has not been on L-carnitine. 

 

I am wondering if she should be tested for mitochondrial dysfunction before getting on more supplements... but I wonder - if she gets on supplements - will the tests be valid? Considering she already is on supplements and the coQ10 was such a miracle for her migraines...

 

Do others get carnitine levels tested before giving L-carnitine?

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Response (54.)...  by nancyo - 2008-04-09 18:10:22

The transition from pmeds to empower can be very difficult.  I am so sorry that this happened to you.  I don't have any words of wisdom other than to say that something similar happened with me and my son.  His dad was out of town and he had a bad reaction to a B12 shot.  He became very agressive toward me so I in desperation called 911.  I probably wouldn't have called them, except I was worried about my younger son.  Fortunately, the police were very understanding and my son calmed down after talking to them.  

 

It is so hard to hold our children 'accountable' for their actions when we can't tell the difference between learned behavior and instability.  

 

Nancy

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Response (54.1.)...  by jistac - 2008-03-29 07:31:01

I unfortunately do not have the study or a pointer to the information.  But I read about the study or info in the New York Times Science Times.  Apparently ingesting large doses of Probiotics actually slowed healing or recovery in a certain group of patients.  I wish could give you a pointer to the study.  What I remember thinking when I read it was that it always turns out that way:  Things that appear to be good for us have some downside and anything that is good can also be bad.  It all depends.  It is like Vitamin E. We used to think that it did no harm and everyone was recommending taking it for your skin and for health.  Now we know that too much Vitamin E can be dangerous and cause potential harm.

 

I will see if I can find the probiotic info.  But right now I have a crazy crazy puppy who is insisting that I play ball endlessly with him.  I just crated him so hopefully he will calm down.

 

Jistac

CAM Board Moderator

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Response (54.2.)...  by jistac - 2008-03-29 11:06:24

Naomi,

Spent some time googling and yes in fact the study mentioned in the NYTimes was indeed the pancreatis study.  There was no mention of it being injected though.  What I read said that patients were given either  a placebo or a commercially used probotic.  But you might be right and it was indeed rejected.  I couldn't find the actual study, just lots of science reports on that study.

 

But I do think that what can be learned from this is that you can't assume anything is harmless 100% of the time.  I love to read medical mystery type articles and one recently really drove the importance of having a good clinician working with you.  A DR arrived in the ER with all the symptoms of a stroke.  It was tempting to give him the drug they give that prevents damage from happening as a result of a stroke.  But something about the guy's initial blood work didn't quite fit with what one would see if he had had a stroke and the ER doctor paused and decided to risk waiting to give the drug (which must be given as soon as possible after having the stroke to be effective) to do more tests.  The situation was borderline enough that many other doctors would of just given the guy the stroke medicine figuring that it was better to be safe than sorry.   It was a good thing they didn't give him the stroke medicine right away because the nagging feeling the ER doctor had that things were not quite fitting together saved this guy's life Many tests later it was discovered that the guy did not have a stroke but had an aortic tear and had they given the medicine for a stroke to this guy it probably would of killed him.  

 

Hopefully your friend's situation with their stomach and their gut is getting better and will eventually heal.  

 

Jistac

CAM board MOderator

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Response (55.)...  by jistac - 2008-04-09 21:00:06

It is so hard to be a single mom of a kid with this illness.  I know that my dh was always worried when he traveled that something would happen that I couldn't handle.  I am petite and my ds is tall and strong.  But fortunately when my DH traveled our son was often quite good.  If he was unwell he would just isolate himself and I didn't interact with him that much so things were easier.  

 

I also remember watching PBS's show on Einstein's wife.  Einstein had a son who was mentally ill and after he left his wife she was left alone to care for him.  Apparently he raged and she had a heart attack that killed her.  When I heard that I started bawling my eyes out.  By the time I was watching this we were beyond the frightening rages that our son would have frequently.  Clearly the emotions that I have had from all those years are still there because I couldn't stop crying.

 

BTW, one thing that we did was we "rage proofed" our house.  We removed any heavy object or item that could be used in a rage do to damage.  Vases were cleared out.  Heavy objects like baseball bats were non-existant.  Counters were left clear and empty.  Our son still managed to break a lot of chairs, dent walls (a winter squash did the worst damage), and destroy objects.  But we did our best to minimize the chances that he would do something really bad.

 

Jistac

CAM Board Moderator

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Response (55.1.)...  by  - 2008-03-29 21:38:56

I read that problems arising from Vit E relate to synthetic variety only.  http://www.naturalnews.com/002352.html  This is the quick and dirty google reference, but I am sure I initially read about it somewhere else.

 

R

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Response (56.)...  by kalee - 2008-04-11 14:00:28

Herbal Science International, Inc. Recalls Twelve Dietary Herbal Supplements Nationwide Because of Possible Health Risk Associated with Ephedra, Aristolochic Acid and Human Placenta (April 10)þ

 

From: U.S. Food & Drug Administration (FDA) (fda@service.govdelivery.com) 

 

Herbal Science International, Inc. Recalls Twelve Dietary Herbal Supplements Nationwide Because of Possible Health Risk Associated with Ephedra, Aristolochic Acid and Human Placenta (April 10)

Fri, 11 Apr 2008 07:49:00 -0500

 

Herbal Science International, Inc. (AKA Jen-On Herbal Science International, Inc.) is recalling twelve dietary supplements that contain ephedra, aristolochic acid or human placenta because they may present a serious health hazard to consumers.

 

Sorry if the link doesn't come through. Go to FDA to read further.

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Response (57.)...  by blueyeliz@hotmail.com - 2008-04-12 09:47:48

This isn't really about CAM, but you know me here because I've been using EMPower for my ds10.

 

Last night I broke down and called 911 while he was punching a hole in a wall upstairs with a miniature baseball bat, and throwing things at me from the loft.

 

This morning I'm devastated.  Juvenile refused to take him because he is so young, so he went home with his dad (my ex).

 

Part of me knows I can't tolerate these behaviors without consequence.  But the other (huge) piece of me feels like I've betrayed him.  I know he has a brain disorder and it's his illness that provokes theses things.  And I want to be the person he can trust, and I'm miserable thinking i've broken something that can't be repared.

 

I'm also terrified I will be forced to go back to meds, when I know that he is better overall without them.

 

Liz

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Response (58.)...  by naominjw - 2008-04-12 09:57:34

The GP said that he thinks the blood & urine tests would be useless while she is on supplements.(He is not an expert, so if anyone else knows from experience, let me know)  But--she can't get off the supplements. Just to get off the CoQ10 would require weeks of increasing the Topamax before she could get off the CoQ10, and even then, she would be right back to where she was with just partial migraine control, and side-effects. Then... weeks more to again slowly taper back down from the Topamax. 

 

I guess the symptoms she has had (eyes, brain, endocrine system, sleep disorders, ataxia, migraines, fatigue) plus the response to supplements pretty much tells us the story.

 

Still... would love to know definitively.

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Response (58.1.)...  by brandonmsmom - 2008-04-12 10:19:38

They are not "bribes" LOL my pdoc calls it "nessecary positive behavior reinforcement therapy" :sillygrin:  

 

Brandons mom 

Amy

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Response (58.1.1.)...  by elialex - 2008-04-14 12:47:34

I'll have to remember that!  It sounds so much better than the "bribes, threats and extortion" used at our house.

 

Roxanne

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Response (59.)...  by waterdancer@charter.net - 2008-04-13 17:37:32

We have spent almost a year getting my daughter up to a theraputic dose of Lamictal and then tapering it dowm until we've eliminated it entirely. I know, I know, meds work differently on everyone, but I would urge caution with Lamicatal. It made our daughter much much worse and the pdocs refused to believe it was the drug itself causing the problem!

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Response (60.)...  by naominjw - 2008-04-13 17:37:32

My older daughter is an ultradian cycler, mixed states, etc. She's been on Lamictal a long time, but still cycling and tended to get manic. She tried all the atypical neuroleptics, and last one was Abilify. She got on maximum dose (30mg) which caused severe anxiety and severe akathisia, so then was on 3 meds to counteract the side-effects. 

 

So she got on E.M. power. She slowly slowly slowly got off the Abilify. Completely! It has been several months since she weaned completely off the Abilify and she is STILL stable! After 10 years!

 

She is still on the same dose Lamictal, which her psychiatrist does NOT want her to lower. The problem is that she is extremely, tired. Even if she sleeps 11 hours she is still tired. The pdoc says it is NOT from the Lamictal (like maybe she doesn't need as much so is overdosed?). He says that being tired from Lamictal is very rare. So instead, he sent her to a sleep doctor who wanted her to try Ambien to see if she sleeps more deeply and that will get rid of her daytime tiredness. 

 

She is still tired. Next will be a sleep study but that isn't scheduled yet. 

 

I guess I want to know... Is it true that this incredible fatigue she feels would NOT be from needing to lower the Lamictal? The pdoc says there is no harm in her staying at the same level of Lamictal she was on even if she is completely stable and maybe doesn't need as much... better to stay on it. 

 

OK.... Fine... stay on it.... but what about this fatigue?

 

Any ideas..... 

 

Oh, and by the way... the number of years we spent trying everything else BEFORE E.M. Power on her is pathetic, BUT... it was her choice (she'd now an adult). Her younger sister, on the other hand, has been on it for about 8 years.   :smile:

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Response (61.)...  by brendah895@aol.com - 2008-04-14 02:35:21

i agree, sounds like a good one.  does it happen to be julie at UIC ped mood disorder clinic?  we have traveled from florida to see her...she is wonderful.

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Response (62.)...  by mom2nicolas - 2008-04-14 02:35:21

Hello!  After a visit to a new pdoc yesterday, I have a LOT of questions!  He has ordered a slew of bloodwork for my 6 year old.  One of the tests requires me to order a Metabolic Panel Kit from a website and includes a urine screen and blood draw at a local lab.  It is testing:  Kryptopyrrole Urinary Quantitative, Copper serum, Zinc serum and Histamine whole blood. I understand the purpose of the test, but when I called my insurance company about this, they had no idea of what I was talking about.  The kit cost $170+, which I just can't afford and need my insurance to cover all tests(we have a lot of other health related costs with him as well.)  My question is:  has anyone heard of this/done this and can the doctor just order the individual tests from the lab instead othis kit?  That was the suggestion of the lab when I phoned them.  The website we were referred to to purchase the kit was www.pyroluriatesting.com.

 

We are excited to be exploring this route of treatment, but I am skeptical of any medical test I order off the internet that my insurance company doesn't recognize!

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Response (63.)...  by crockower@aol.com - 2008-04-14 07:49:58

Thank you for the positive uplifting message.  What a great way to start monday.

 

My son is 8.  We went through a lot of the same med trials you did but not with much luck either.  Ended up using a biomed approach with

much success.  However it is a shoe box full of vits. in the am and pm.  But we'll take that over instability any day!  

 

My question for you is:  How is your son doing in school?  Is he in mainstream; inclusion; self-contained; or private school?

 

The reason I ask is bc my son is in a public special school (BOCES) for kids classified ED (Emotional disability).  It's a rough school, my son hates it and so do I.  With his new found stability I can push for "least restrictive" and get a little more towards mainstream which is our ultimate goal.  There are so few kids in my district like ours I was wondering what your experiences have been.

 

Thanks, Christy

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Response (63.1.)...  by blueyeliz@hotmail.com - 2008-04-14 21:17:42

Darryl, were these brands recommended by Hicks?  I always wonder how to pick supplements, and how to know which are good.  Have you ever used http://www.consumerlab.com/?

Liz

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Response (64.)...  by zbarbuff@vcn.com - 2008-04-14 12:47:34

Hi all! I thought I posted this yesterday but I don't see it. Sorry if this is a repeat. Our DD is 4 yrs old. She has a recent DX of BP. I knew this would be the case as we have 3 other kids who also have BP as well as my husband. We have 7 kids. My problem...she refuses to take the Emp powder. I've tried everything I know to try. I'll start to have some success and then she balks. I am worn out fighting her on this. My husband wants to just switch her to meds because he thinks that would be a lot easier. I REALLY want to try this and give it a chance to work. I understand that it is easier and more rapidly successful if the person has not been on meds. previously.Any suggestions? p.s. at this point I think she has more fight in her than I do.

 

Thanks,

Terri

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Response (64.1.)...  by  - 2008-04-14 23:51:32

http://well.blogs.nytimes.com/2008/04/12/will-a-9-year-old-change-the-va...

 

This adds some interesting aspects to the subject.

 

Rebecca

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Response (65.)...  by naominjw - 2008-04-14 23:51:32

Is there a list of which tests should be done to ascertain mitochondrial dysfunction? I read on the Defeat Autism Now! about doctors ordering diagnostic tests that might yield signs of it. An example was an organic acid test (urine or blood) elevated adipic and suberic acids meaning that mitochondrial ability to extract energy from fat molecules is hindered. It also mentioned a urine test for a methylmalonic acid (MMA). 

 

I am still waiting for my books on autism to arrive... I suppose lists will be in there. But in the meantime... Two questions: 

 

b 1- Is there a list of tests online specifically for mitochondrial function? 

 

b 2- Will the tests show anything if the person is already on supplements that can help mitochondrial dyfunction?

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Response (66.)...  by nschiman - 2008-04-15 11:20:12

As you know, The Balanced Mind Foundation has been working hard to provide our members with a better, more user friendly and versitile platform for our message boards and support groups. This Friday we will be moving to our new home. This will require that we close the message boards for several hours so that we can move over active discussion threads. 

 

Archived discussions will all be moved over as well and housed in a folder so that you will have access to them just as you've had on this platform. 

 

We apologize for any inconvenience this may cause but are confident that the short interruption will be well worth it and that you will enjoy the new features of our message boards. 

 

If you have any questions or concerns, please feel free to email me. 

 

Nanci Schiman, MSW 

The Balanced Mind Foundation Program Coordinator 

nschiman@thebalancedmind.org

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Response (67.)...  by brendah895@aol.com - 2008-04-16 06:01:00

my son was diagnosed at age 5 but we did not treat since his behaviors were not completely out of the norm for his age.  treatment started at age 6.5 and after a lot of time, medication trials, travel and $ we were at our wits end.  he at 9 was institutionalized for 2 days for uncontrollable agression/anger at home yet in the facility he didn't have any problems. and didn't seem to care that he was even there in that barren place.

 

he was sent home on lithium (after trying lamictal, abilify, risperdal, seroquel, trileptal and wellbutrin, concerta).  he became toxic twice requiring subsequent ED visits not covered by my healht insurance because he wouldn't turn 9 for 2 more weeks and had to go out of network.  i am a nurse who was very careful but sufficient hydration is not easy during august in florida so lithium was too difficult to control.  

 

we finally took him off all meds.  gave him a couple of weeks and then started him on "country life Omega 3 Mood" 1 cap in the am and one in the PM. had tried omegas before and this is the only one that has worked.  the epa/dha ratios are right for him.  i am giving an extra in the am right now during the spring.

a good multivitamin is always a good thing.  we use michaels for pre-teen boys.  it has additional herbs that are good for prostate, attention etc.

occasionally melatonin sublingual 3mg if he is having trouble sleeping (maybe for a week to get him back on track)

 

most importantly is the carb cravings.  we have found that by using oregano oil capsules (we use Gaia Herbs) 1 twice daily for 3 months the first time then when they come back we only do it for a month since i can recognize signs right away.  i have found NO cookies, crackers or dry cereal hidden in his room for over 6 months!  

most recently we were able to have him do a yeast cleanse  but your child needs to be ok with swallowing a lot of pills.  it is 6 caps/day in the am for about 2 weeks.  i did this with dylan and he was back to normal the next day.  there were no obvious side effects of this "cleanse" ie no nausea/vomiting/diarrhea/itching etc that you hear of when people say they are doing a "cleanse". i am going to try probiotics daily now to see if we can break the cycle and not have to do anymore.  if it works, i'll post in a few months.

traditional medicine: 

he is now on risperdal 1mg at nigt (down from 1.5 twice daily) and strattera 40 mg (was on concerta 36 or 54 at some point).

 

I just wanted to put this out so that it may help someone...i truly have a new son and his younger sister and brother asked me why he isn't so mean to them anymore.(the kids are very close in age)  he is also passing in school.  

 

he still struggles but is able to get out of a frustrating situation and pull himself together within 5 minutes or less which is down from hours last summer. you couldn't get me to give up the risperdal or strattera but i am glad that i was able to help him with some of his other challenges using vitamin therapy.  it has significantly lessened his cognitive dulling.

 

good luck to all!

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Response (67.1.)...  by jistac - 2008-04-16 06:01:00

Chirsty,

We have found that finding the RIGHT school can be essential in keeping our son stable.  Even if the treatment (traditional meds or alternative) is perfect because stress can and will trigger breakthrough cycling.

 

I would defintely push to have your son removed from his current environment and placed in a setting that is more appropriate for his needs.

 

Jistac

CAM Board Moderator

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Response (68.)...  by nschiman - 2008-04-18 08:15:53

Our message boards are closed for a few hours today as we transition to our new platform. We apologize for the inconvenience and look forward to sharing our boards with you shortly in our new home! 

 

Warm regards, 

 

Nanci Schiman, MSW 

The Balanced Mind Foundation Program Coordinator 

nschiman@thebalancedmind.org 

 

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DISCUSSION: Son in jail,CO DOC refuses EMP  2008-04-03 20:37:06   2008-04-03 20:37:06

 

I can't quite get the hang of this...again,I thought that I posted a message but I can't find it. So here goes again...Our 18 yr old BP DS is in jail and any meds etc, have to be okayed by the county doctor. The Dr says that at 15 capsules per day our son would be getting WAY too much vitamin A and by the time he is 25 his bones would be brittle to the point of osteoporosis. I'm steaming mad, but I can't honestly say this won't happen because I just don't know. Can anyone inform me about this? Meanwhile I will check out True Hope's website and try to get some answers.I suggested to the nurse that she and the Dr should research the website also, but I guess they don't have time for that!! DS isn't on any other meds and hasn't been officially diagnosed, but we did a COMPLETE family history with a LCSW and this was his finding.Thanks for any help.

 

Terri

 

RESPONSES:

 

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DISCUSSION: Help with 4 yr old/EMP  2008-04-01 17:02:48   2008-04-01 17:02:47

 

I would appreciate any help here...wour 4 yr old daughter was recently dx with bipolar disorder. We are trying to go the empower route with the powder, but she is fighting us tooth and nail. She absolutely refuses to take it. I don't really think this is about the powder as much as the control issue. She has really escalated just in the  past 2 weeks and I would really like to get this started so that she (and we) can get some relief. Have any of you had success in giving the powder to a younger child. I would love your suggestions.

 

Thanks,

Terri

 

RESPONSES:

 

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Nanci Schiman, MSW 

The Balanced Mind Foundation Program Coordinator 

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DISCUSSION: Son in jail,CO DOC refuses EMP  2008-04-03 20:37:06   2008-04-03 20:37:06

 

I can't quite get the hang of this...again,I thought that I posted a message but I can't find it. So here goes again...Our 18 yr old BP DS is in jail and any meds etc, have to be okayed by the county doctor. The Dr says that at 15 capsules per day our son would be getting WAY too much vitamin A and by the time he is 25 his bones would be brittle to the point of osteoporosis. I'm steaming mad, but I can't honestly say this won't happen because I just don't know. Can anyone inform me about this? Meanwhile I will check out True Hope's website and try to get some answers.I suggested to the nurse that she and the Dr should research the website also, but I guess they don't have time for that!! DS isn't on any other meds and hasn't been officially diagnosed, but we did a COMPLETE family history with a LCSW and this was his finding.Thanks for any help.

 

Terri

 

RESPONSES:

 

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DISCUSSION: Help with 4 yr old/EMP  2008-04-01 17:02:48   2008-04-01 17:02:47

 

I would appreciate any help here...wour 4 yr old daughter was recently dx with bipolar disorder. We are trying to go the empower route with the powder, but she is fighting us tooth and nail. She absolutely refuses to take it. I don't really think this is about the powder as much as the control issue. She has really escalated just in the  past 2 weeks and I would really like to get this started so that she (and we) can get some relief. Have any of you had success in giving the powder to a younger child. I would love your suggestions.

 

Thanks,

Terri

 

RESPONSES:

 

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