thread title: Re: Liz/which supplement question
post text: This is a carry over from old board ( topic Testing for Mitochondrial dysfunction.. in library)

Liz asked:

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 [url]http://www.consumerlab.com/?[/url]

I've come across that site, but didn't join. No doubt there are differences in performance. For the most part, I do stick with what was recommended by our dr, as he has sorted them out to his liking. He has working knowledge of what to get and expect from the supps he works with, so it minimizes some of the response variables.  One of his criteria is the fillers added, conscious of allergies like GFCF.  As for the ubiquinol, Integrative therapeutics brand was recommended; [url]http://www.naturalhealthyconcepts.com/ubqh-IT60-p-integrative-therapeutics.html[/url] was a source. Other products appear to use the same trade-marked process- (Kaneka QHô) - so I've gone by price on that one. Another supp we use is NADH, trademark is Enada, and so that one I shop by $.  Another detox supp we use is calcium d-glucarate. Different manufacturers make it under license by one company, so I've been using Natrol, which is gfcf, and cheaper than Pure Encapsulations brand.

I've stuck with the B-vitamin he recommended, by Pure Encapsulations. He recently started having some supps compounded specifically for his office, ie, his methylation support is a combo of B12 forms, a serotonin support formula contains L-hydroxytryptophan and L-tyrosine.  It's a lot like using all 'brand name' meds vs the generics. On a few things I found I could substitute a similar 'less expensive' brand without noticeable effects, but that was after a reasonable amount of time using his choice. The times I have questioned his particular choice, he's had a reason.

 

I understand the confusion of 'what to pick', which is why I ended up with our DAN dr. Once I started looking it all got more complex, though I felt using the supps could make the difference. Case in point, before spring break, Levi did some things that put us back on guard again... A few phone consults with Dr.Hicks and several supplement changes have raised his ceiling higher than it was before.  One of the changes was switching folic acid to folinic acid- methyltetrahydrofolate, which was discussed in the archived med page threads topic Deplin.

(sorry I didn't get back sooner.. busy work schedule. Liz, did you get an email from me about another question? If not, email me [email]dkilsdonk@att.net[/email], and I'll resend it)

Darryl

The Balanced Mind Foundation parent volunteer

thread title: What is DAN?
post text: I've seen DAN on may threads but, I don't know what it is.

Would someone explain it to me please;)

Thanks

MaryAnn

post text: I'll give you the short version, Darryl is much more knowledgeable and will likely post more.  DAN stands for Defeat Autism Now and uses a bio-medical treatment approach. Here are a few links that explain it in more depth.

[url]http://www.autism.com/dan/[/url]

[url]http://www.autismwebsite.com/aRI/dan/dan.htm[/url]

Nanci

post text: Hi :p

If I could retain Darryl's knowledge or have a DAN dr here, I would go for it with C!  I did start working with a nutritionalist with supps, etc but that wasn't going anywhere fast. I absolutely believe in the biomed route and I tried but failed :(   Also, it is more expensive since insurance does not pay anything on supps but I could get over that.

There is also the GFCF diet that a lot of people are using. Since C won't eat anyway, I can't implement that right now :mad:

Hugs!

thread title: Omegabrite supplier/coupon?
post text: It was just recommended to me that I add a dose of Omegabrite to my son's regimen of Risperdal and Lamictal. I'm set to order it online but see that I can enter a coupon number, so I did an online search, which revealed (among others) a less expensive Canadian supplier. Since quality is so crucial, can anyone advise me on the cheapest, most reliable supplier of this supplement? Or give me a coupon number? Many thanks! Carol

thread title: Results back from Testing....
post text: As some may recall, we recently "stumbled" into a new pdocs office and discovered that the practiced alternative medicine (in combo with traditional meds).  We recently completed a SLEW of blood tests, including a metabolic panel to test for a variety of things.

Results came back this week and we discovered that Nicolas' body does not produce any dopamine and has a variety of amino acid levels that are off (either high or low).   He explained that the combination of everything found in the testing tells him that important paths in the brain have been shut off and that contributes to his physical & mental health problems.  (honestly, he said some really intelligent stuff that made sense last night, but I can't adequately explain it here.  I just know I believed him.  Fully believed him!  That's a leap of faith for me.)

So, we are adding Adderall to immediately address some serious attention/focus issues so he can complete the school year while we slowly adjust his vitamin levels and remove him from Risperdal.  

Here's what we are adding:

P5P (active form of B6) -- 50 mgs. a day

Zinc -- 10 mgs a day (can't find it in this strength at The Vitamin Shoppe -- any ideas?)

Methionine -- 500 mgs. twice a day

Phophotydal Sprine (can't tell if that is what he wrote or not??)  100 mg. in p.m.  

Children's Multivitamin WITHOUT copper.  Can't find this locally either -- any suggestions?  He said a compounding pharmacist is our last resort.

The other cool thing -- their practice is in the process of opening their own supplement show so when we go for appts. we can get everything we need there.  They are also adding a lab, because they found that mainstream labs are often confused as to how to do all the necessary testing (we had a poor experience as well).  His prognosis was we could start by weaning him off the Risperdal and eventually he hopes that Nicolas will be drug free.  I left there with so much hope and excitement!  It was amazing.  Nicolas was pretty excited too to think his brain would work right finally!

So, any input or feedback is appreciated.  I know I probably botched half the terms in this post, as I am only familiar enough with this to be dangerous at this point.

post text: I'm glad you found this pdoc.  Kirkman Labs carries a number of multivitamin formulations, see:

[url]http://www.kirkmanlabs.com/products/multivitamins/multivitamins_index.html[/url]

I think most are without copper.  Kirkman labs caters to the autistic community.  Many people with autism have too much Copper in their blood.  I've been giving my youngest, basically 'normal' son (well maybe a bit ADD):

[url]http://www.kirkmanlabs.com/products/multivitamins/everyday/everyday054.html[/url]

It has some minerals in it too.  I like it because the capsules are pretty small and I trust the source.

Oh, I think you must mean 'phosphtidyl Serine'.  The Empower folks sell this, and it is available from a number of different sources (GNC, NOW?, Solgars, etc.).  It seems to come in a 'pure' form and a mixed form.  Not sure which is best.  My son used to take the Solgar form.

Nancy

post text: [url]www.lef.org[/url] (Life Extension Foundation) also has high quality supplements and sells phosphatidyl serine.

post text: I am so glad that you have found a doctor who is supportive of looking at other alternatives than just straight medicines.  We have found in our area, it nearly impossible to have anyone even look at our daughter without having her on "traditional meds"  The only thing I would warn you to watch out for is adding Adderall.  We have found with our daughter, anytime we add in a stimulant it really messes with her mood.  I know there are a lot of other parents who have experienced this problem as well.  She usually improves for a few weeks, and then she goes manic.  Just keep an eye out.  We have found that p-serine is a good "natural" approach for ADHD.  Best of luck!

post text: The pdoc wanted to add Adderall so we could finish up the school year while trying to get his chemical levels up to normal.  We did try concerta (with a diff. pdoc) in the past and it made him very, very emotional and teary.  He would be sobbing for no reason and it really scared him to feel that way.  The pdoc knows this, but still wanted to try Adderall.  I just filled 1/2 a script (it was $400 just for two weeks worth) because I couldn't justify the $800 knowing it may not agree with him.  The Vitamin Shoppe was out of most of the supplements we needed (I guess this pdoc has been sending a lot of patients there lately), so we are waiting for this week's shipment to arrive to pick up the rest of the things we need.

post text: our vitamin shoppe has solgar zinc picolineate, in 22mg tablets of zinc which you could split.  I've been using that as a zinc supp,  giving one to 2 a day.  10 doesn't sound that high, but it may depend on how much is in the multi, which we don't do. Our dr also did not want us to add any copper.

Back when my son was on meds, Concerta was a bust, but a smaller dose of focalin was beneficial (I think the equivalent of about 9 or 10mg of concerta, HALF the normal start level).  As we finished titrating in his supplements, we no longer used adhd meds.   Thru my personal experience with Concerta, I found I did better on about 27 mg, though the 'target' dose was 72mg. Just mentioning it as dosing was a critical factor. Lack of response

Another thing to be aware of, is that during the supplement titration, detox symptoms can mimic ADHD behaviors- we had to back off specific supps occasionally when this occured. Two that I remember being issues were methylcobalamin and an applied glutathione cream. Adding some detox aids (see my post to Beverly) and temporarily backing off the supp amt would take care of it. Getting to the goal doesn't seem to be a straight climb, but rather one with plateaus.

For us, adding in a L-5-hydroxytryptophan/L-tyrosine mix (precursors to serotonin and the catecholamines [dopamine, epinephrine, norepinephrine]) prescribed by our dr has helped with similar emotional issues, as well as anxiety.  It is cautioned to use tryptophan supps with a BP dx, but we do it under dr direction, and NOT in conjunction with meds, so there is not the potentiating effect that could come from using both.

For some articles about raising neurotransmitter levels, look around at the info on the neuroscience site: [url]https://www.neurorelief.com[/url]

Darryl  

 parent volunteer

post text: If you can find a compounding pharmacy in your area they can make up a Zinc pill at the right dosage for you.  When our son was on Choline we had them make up 70mg pills from Twinlabs 150mg pills.

I am glad you are feeling good about this pdoc and his approach to treatment.  I also would be very wary of adding the Adderall and watch your child closely with this addition.  One thing about all the stimulants is that they increase anxiety and all of our kids seem to suffer from anxiety.  Increased anxiety can actually make it harder, not easier to get work done because the anxious thoughts take up much needed space in the working memory.  

Also I would second Dad-WI's comment about supplements.  Sometimes supplements can result in the meds being given being metabolized more efficiently and this can increase the side effects and symptoms from these meds.

Good Luck and Please keep us posted in the weeks to come on how your son is doing.

post text: Thanks so much for all your feedback.  I'm very, very worried about adding the Adderall, but we are going to give it a shot starting tomorrow morning (I wanted to wait until the weekend so I could monitor him first hand, rather than rely on the school to have to do it.)   The doc was pretty adamant that this was a good path to take, so in testing out a new therapeutic relationship, I decided to trust him this time (as he is the professional).  If this doesn't pan out, I figure then I will feel more confident questioning his professional opionin in the future.  

It is a bit odd that we are dosing the Adderall XR twice a day (he wants him to have around the clock coverage was his explanation.)  He may even increase to three times per day if we see it wearing off in between.  The pharmacy questioned this practice, but he clarified that is how he wanted it done.  He really felt it was important to keep his symptoms under control around the clock, rather than just during school hours.  Again, this is outside the box of how I thought XR meds were used, but he seems to be confident in his decision (and have a valid medical explanation as to why he thinks this).  

So, I will be watching my son like a hawk all weekend and probably won't get much sleep.  When we tried concerta, we ended up at the ER because he was shaking all over and had rapid breathing.  Here's hoping we don't end up there again!!!  (my insurance account is broke after all these meds!!).  

Keep him in your thoughts and prayers!

thread title: Anyone know what happens to the brain during psychiatric break?
post text: Hi all-

My 8 year old daughter has been doing pretty well, since we began switching her to EMpower from a lot of traditional meds.  We had to add in a small amount of Risperdal, when she began having some delusional thinking at home.  But we have had several weeks of positive results.  However on Sunday night, she had night terrors and wasn't able to sleep.  At school on Monday, she was a wreck!  She came home and asked me if I would make her happy.  I said yes, and she said, "well then kill me."  She told me she was having thoughts of getting a knife and cutting her head off.  Just horrible, horrible thoughts!  It just went downhill that fast!  I called her therapist & True Hope.  True Hope said to give her a heavy dose of Vit D to hopefully pull her out of the depression, and her therapist said to give her 24 hour supervision, and reevaluate a need for hospitalization the following day (hoping that she would sleep some of it off).  She was able to sleep Monday night, and her mood has been much more stable the last 2 days, but it seems like she is in shock to me?  She is very disconnected from herself, almost robotic?  She is almost void of emotions, and isn't aware of how out of control her body is at school.  I am grateful that the bad thoughts have passed for now, but am concerned at the state of her brain.  Anyone else experience anything like this with your children, and if so what strategy did you use to help them reconnect?  We are currently using journaling and cartooning.  Thanks for your help!

post text: I'm very sorry to hear your daughter is having such a rough time right now.  I don't have a particular answer for you, and hope that Tally, who has lots of first hand experience with protracted withdrawal, will see this and give her thoughts.

I can say that for my own daughter at least, stress is a big contributor to destabilization, and was one of the reasons she stopped taking EMP.  For whatever reason (and there were several "limiting factor" possiblities as well as who the heck knows) the EMP protocol didn't give her the anti stress help she needs. Stress/anxiety is related to high glutamate levels in brain, and high cortisol levels in the body, both of which she tested high for.  Her naturopath has her taking l- theanine and taurine to help with this as well as other amino acids, and vitamins (I'm not totally clued into her treatment as she is 20 now).  She also takes lamictal which lowers glutamate levels too.

One thing I have discovered, though it is very hard to remember in the thick of the emotional distress destabilization causes everyone in the family, is that things do settle down.  And to keep learning and trying.  If one thing doesn't work, another will.

I hope others will have more useful answers for you.

Best,

Rebecca

post text: [QUOTE=beverlymeyers@hotmail.com] ... it seems like she is in shock to me?  She is very disconnected from herself, almost robotic?  She is almost void of emotions, and isn't aware of how out of control her body is at school.  I am grateful that the bad thoughts have passed for now, but am concerned at the state of her brain.  Anyone else experience anything like this with your children, and if so what strategy did you use to help them reconnect?  We are currently using journaling and cartooning.  Thanks for your help![/QUOTE]

YES!  My daughter had this happen. To be quite honest, it took quite a while for her to recover. And - things sometimes got worse before they improved more. But she was not on E.M. Power yet. For her, E.M. Power was part of the solution. It was a life saver, but it was not enough. She turned out to have intestinal malabsorption issues and all her symptoms were dubbed "mental illness" right up to when she got diagnosed with osteoporosis. I shudder now to think what might have happened if she'd been on no supplement at least! Even when she got on EM Power, it stabilized her but she could not get off the meds. But without it, the meds were not enough either.

So..  you asked about the brain. Damage happens to the brain. It loses grey matter. It takes time for neurogenesis. Long-chained Omega-3 fatty acids is supposed to help a lot with that (links for types: "[URL="http://itsnotmental.blogspot.com/2008/02/fish-oil-and-favorite-brands-of-omega-3.html"]Fish Oil": $$ and Favorite Brands of Omega-3 Supplements [/URL] ).

During this time, my daughter needed extremely low-stress, low-key environment, and active outdoor stuff with lots of sunshine. Can you get her out to a farm? Ride a horses? Things like that helped my daughter. Forget chores. I wish I could have just forgotten school as well, but they were great with her (Montessori), and she worked on stuff from several years earlier. She thinks having the school work (albeit at a lower level) helped her brain.

I have to admit, in my daughter's case, she had months of psychosis rather than days, and her cognition never returned to where it was at prior to it. To confound the picture, she had a relatively rare type of hypothyroidism which also wasn't diagnosed for years in spite of classic symptoms.

For your daughter, however, I would just have lots of patience and really baby her... and get her outside and active, and take care of her nutrionally.

post text: One of the other things I have found is that we had to reteach ourselves how to work with Levi. Earlier, we saw and dealt with a lot of cognitive blunting. It was a challenge to keep focus and stay task oriented. Med-stable, he developed a set of skills on par with his functioning. As the fog cleared, and he had more things firing, he needed to retool to process the additional input. With the awakening, there seemed to be a certain confusion of how to handle this new 'power' that led to some zoning and frustration. We all had to develop new tools to accomodate this growth. I think you are on the right track with more stories and diaglogue.

 We weren't using empower, but I found that when my son had night terrors (or other negative symptoms) during his transition period, it meant it was time to reduce meds. When I started I had a hard time wrapping around that concept, and did my own 'testing', which supported TH protocol.  From what I've read from other parents, microdose variations can have substantial effects. Maybe a little dialing in  will help. We had experiences where the meds can have inverse effects while titrating up to therapeutic levels, and also when titrating down. Some genetic expressions change with the meds, so the symptom exageration may be due to the readjustment. I know when looking for stability with meds, it was pretty important to ride it thru  and give things a chance to reboot. It can take a while for the effects to cascade thru. I've also found that I had to sometimes remind myself that lowering a dose is an option just like raising when dialing in. While we were using higher doses of some meds, minimal doses of others had a significant impact towards the whole balance of things. I've found that with the supps too.

  Some things specific to what we are doing:

  Our dr recommended cod liver oil, I suspect one reason is the DHA is a little higher. DHA more affects brain structure than function from what I've read, and may be beneficial in a 'recovery' stage. It is not felt as critical to supplement DHA because the body will metabolize it from the EPA, but if there is a demand, that pathway may not be efficient enough to provide as much as needed.  It also has some natural D and A.  

  Our dr also has Levi taking DMG [url]https://www.vitaminshoppe.com/store/en/browse/sku_detail.jsp?id=VS-1065[/url] - I understand it as function booster.  We started at 125mg/day, and now do it am and pm.  The body can metabolize it from choline, but there may be metabolism limiting factors present.

 We're also big on antioxidants - Ubiquinol, Moducare [url]https://www.vitaminshoppe.com/store/en/browse/sku_detail.jsp?id=EK-2002#prodInfo[/url],

along with supps to help with detox- artichoke extract, SOD [url]https://www.vitaminshoppe.com/store/en/browse/sku_detail.jsp?id=VL-1106[/url], calcium d-glucarate [url]http://www.vitacost.com/Natrol-Calcium-D-Glucarate[/url]. Nutritional supps pull toxins into circulation and taking these twice a day  supposedly helps with eliminating them. They've seemed to work well for Levi.

 Take care.

 

Darryl

Parent volunteer

post text: Thanks for all the information!  I got a call from school that she has cuts on her wrist.  She is also having a lot of "accidents" at school, where she piddles repeatedly in her underwear, since what happened on Monday.  I called her therapist, and she said that it her physical way of releasing extreme emotional pain.  I just cannot get her to "reconnect" with herself.  She is not wanting to talk about what is going on with her (very blank . . . no thoughts or emotions), and everything is "I am calm and happy".  Normally, she is very open and pretty honest about what is going on with her.  Is there a danger with leaving her in this state, without adding in "regular" meds, or should we try to continue treating it the way we have been (with Empower & add-ons)?

post text: Any chance of getting some metabolic testing done?  You may want to do a search at truehope for posts on DAN drs. Some people that have stalled out with empower, have found reasons 'why'  working with a DAN dr.  It might also be good to check with regular ped dr to rule out any viral, bacterial or fungal infections, which could also explain new symptoms. With a change in behavior, I'd be concerned. FWIW, we have had several blips that we were able to make supp adjustments for and forge ahead after discussing the matters with our DAN dr.  I can only offer parental advice, and that would be to trust your gut feeling. It's likely right.

Darryl

Parent volunteer

post text: I am so sorry you and your daughter are suffering through this.  It is at times like this where email and message boards really fail, because depending on how I read what you wrote your daughter is either in a severe crisis or is just coping with growth/transition and healing.  The fact that she was suicidal makes me very nervous and concerned.  And I am not comfortable with the way you describe her not having any emotions and moving somewhat robotically.  Are you sure she is safe and does not need hospitalization?

I do know that after every major regression our son had he had some period of healing and depression.  It was often very upsetting for him to have had an outburst or to have the emotions he had during a bipolar break-out.  Intensive therapy was key in helping him and us process what had happened.  I hope that your daughter is talking to somebody on a regular basis.

I will be keeping my fingers crossed that things improve.  I would stay in touch with all your care providers and give your daughter plenty of opportunity to meet with them as well.

Good Luck

Jistac

CAM Board Moderator

post text: I agree with Jistac that you have to consider whether or not your daughter is safe. Cuts on a wrist are serious business, IMHO. I realize that some kids are cutters and not suicidal, but when put together along with her change in demeanor, I think it should be taken very seriously.
People are often somewhat calmer than usual when they have decided to commit suicide & come up with a plan, because they feel the pressure is off now that a decision has been made.
I hope things get better for you.

post text: We have been in contact with her Psychaitrist & Therapist since Monday, and they both feel that she is not to the point of hospitalization, yet.  I got her to talk about the cutting yesterday, and that helped with what appeared to everyone around to be shutting down.  However, in hind sight -- she was distancing herself from us, because she was trying to cover up the cutting.  Once that was out in the open, we saw a decrease in the disconnection.  Her Psychiatrist put her on .5 mg of Risperdal (instead of .25) hoping that it will help to stabilize her.  It was hard to do, but if we were to hospitalize her she would be on a lot more than that.  Thanks again for the input~

thread title: update
post text: Well, daughter seems to be in a good place now.  Finally!

A short recap, she stopped EMP and microdose of lithium cold turkey in Nov.  So for a number of weeks was unmedicated and doing pretty poorly, though not as poorly as I had anticipated.

I found a DAN naturopath, and he found high lead and aluminum, and wonky cortisol levels.  She has been having weekly chelating sessions (now finished)which comes with vitamin IV.  She takes l-theanine and taurine to get cortisol normalized.  Recently had neurotransmitters tested and is low in serotonin, high in gaba, elevated glutamate and glycine.  Is taking some blended supplements to get those in order, but no 5htp as it makes her irritable.  Naturopath has substituted kava for that and so far so good.

Another interesting thing he has done is put her on ozone therapy to boost mitochondrial function.  They take some blood out, ozonate it, and then put it back in.  I had my doubts, but again, it seems to be working.

She also takes 100 lamictal, and that works well for her.  My guess is that one of the reasons this is so, is because it lowers glutamate.  And, for her, pot helps with anxiety and depression.  It too lowers glutamate.  I know that is a controversial one, but....for her it works and it's out of my control anyway.  

Of course the naturopath is pricey. About double the cost of EMP.  We're going to try reducing the vit. IV and ozonation to twice a month instead of weekly.

On the plus side, her recent destabilization got pdoc into high gear for having her apply for disability income assistance, and that has just come through.  If her good health holds (knock on wood) it looks like she will be able to go to theatre school in the fall  and continue to be eligible for the benefits, which will be a great help.

She is doing part time theatre classes and part time work.

She is still a "race horse" in that her health falls within a very narrow window, but life is working for her right now.  Whew!

Rebecca

post text: Rebecca,

I am glad to hear that your daughter is doing better and seems to have stabilized.  Wooohooooo.  And I hope she can start acting/theatre school in the fall successfully.  Pat yourself on the back.  You have worked hard to help her get to this point.

PS I would watch her carefully on the KAVA.  It generally is not used in this country for anxiety because it causes some problem which I can't remember.  I remember asking Popper about KAVA for myself and he said he wishes he could use it because it is so effective but he can't.

Jistac

CAM Board Moderator

post text: Efficacy of kava extract for treating anxiety: systematic review and meta-analysis.

Pittler MH, Ernst E.
Department of Complementary Medicine, School of Postgraduate Medicine and Health Sciences, University of Exeter, United Kingdom. [email]M.H.Pittler@exeter.ac.uk[/email]
Synthetic anxiolytic drugs are effective for treating anxiety, but they are burdened with adverse effects. Constraints on resources and time often render therapies such as psychologic interventions impracticable. Thus, an effective oral medication with few adverse effects would be a welcome addition to the therapeutic repertoire. This systematic review and meta-analysis was aimed at assessing the evidence for or against the efficacy of kava extract as a symptomatic treatment for anxiety. Systematic literature searches were performed in the computerized databases MEDLINE, EMBASE, BIOSIS, AMED, CISCOM, and the Cochrane Library (all from their respective inception to June 1998). The search terms used were kava, kawa, kavain, Piper methysticum, and Rauschpfeffer (German term for Piper methysticum). Experts on the subject were contacted to provide further information. There were no restrictions regarding the language of publication. Double-blind, randomized, placebo-controlled trials of oral kava extract for the treatment of anxiety were included. All publications were blinded before assessment by a person not involved in the study. Data were extracted in a standardized, predefined fashion independently by the two reviewers. The methodologic quality of all trials was assessed. Superiority of kava extract over placebo was suggested by all seven reviewed trials. The meta-analysis of three trials suggests a significant difference in the reduction of the total score on the Hamilton Rating Scale for Anxiety in favor of kava extract (weighted mean difference, 9.69; 95% confidence interval, 3.54-15.83). These data imply that kava extract is superior to placebo as a symptomatic treatment for anxiety. Therefore, kava extract is an herbal treatment option for anxiety that is worthy of consideration.

[B]But I also found some pretty serious risks of kava:[/B]
It continued: "Although liver damage related to kava consumption appears to be rare, FDA believes consumers should be informed of this potential risk. Kava-containing products have been associated with liver-related injuries - including hepatitis, cirrhosis, and liver failure -- in over 25 reports of adverse events in other countries. Four patients required liver transplants. In the US, the FDA has received a report of a previously healthy young female who required liver transplantation, as well as several reports of liver-related injuries."

post text: Oh, I hear you all on the cons of kava.  We'll be on look-out for adverse effects, which will include a trip to the GP for bloodwork.  But...this naturopath is very conservative and, with the exception of the 5HTP (which he stopped as soon as I reported adverse effects), everything he has suggested has helped.  I nearly had a heart attack when I googled ozone therapy, but I think it is like EMP - it is controversial, but in the right hands effective.  

I think I just have to resign myself to shelling out the $$$ but, if it keeps her functional, and maybe able to have a life and work...worth it.

R

post text: Yay, Rebecca! I'm so happy that you have found out a few things that work and that your daughter seems to be doing well! I am trying to lay off message boards since I am in the final 2-3 months of my dissertation and I find the lure of message boards too distracting :-( to do what I need to do. But, I am popping in and skimming a bit from time to time.

WAY TO GO to both you and your daughter!

Tally

thread title: Dad-wi
post text: Darryl, did you get my emails?  I've sent a couple.  Maybe I'm getting marked as junk?  :)

Liz

post text: Liz- sorry, but I haven't seen any. I had sent something to you, so it should have come thru.  Please try again, make sure it's   [email]dkilsdonk@att.net[/email]

I'll be sure to look for it.

Darryl

thread title: PANDAS ??
post text: Hey y'all

Brandon's been in the hospital for the last couple of weeks in a developmental psych unit (autism) anyways the Dr's there have changed all his dx's and I need help with the PANDAS one (Pediatric Autoimmune Neuropsychiatric Disorders Associated with Strep) does anyone have any ideas how to approach it from the CAM side? Right now the are giving him an antibiotic. His ASO titer should have been 150-200 and its 480 so even though he hasn't been sick he has had strep.

Updating his dx are: PANDAS, ADHD, PDD (but no autism) cerebral palsy, static encephalopathy (brain damage likely congenital):eek:  his only meds are an antibiotic and Artane for the CP movements. They tried a stim but his motor issues went nuts so they pulled it. I am really at a loss at to what to try to use with him the pdocs on the unit are nice but anti CAM but they don't know what to make of him so this one is pretty much on me and CP really doesn't have much in the way of support groups and even less by way of CAM

We are looking at trying HBOT in the fall I met the Dr at an autism meeting where he was speaking and he wants me to bring Brandon in to see if he would be a good candidate for it. He is doing a lot of work with DAN and with brain disorders. He said he has had minimal success up to WOW success. He is about 3 hours away in a beach town so thats why we are looking at doing it in the fall.

If anyone has any ideas as to how we should proceed from here I would appreciate it I am completely in the dark!:confused:

Brandons mom

Amy

post text: You should join the autism biomedical discussion group on Yahoo.  People there are knowledgeable about PANDAS.

[url]http://health.groups.yahoo.com/group/abmd/[/url]

post text: Thanks I did that today hoping to hear back from them!

post text: Hi Debbie,
Good to hear from you.  Email me privately to let me know how things are going and what the school situation is with you guys.

Things are going well here but we had some major bumps this fall.  I will fill you in.

post text: Hi Amy, My son has a PANDAS dx.  There is still a great deal of controversy surrounding PANDAS.  I'm actually surprised that the dx was given to your son so easily (after one elevated ASO titer).  We followed my son's titers over time to establish a pattern.  His highest ASO was around 700.  I know a couple of people that have had children come back with ASO levels well above 1000.  Did the hosp do an AntiDNAse B test?

My son's sx (including mood, tics, OCD) started immediately after a bad sore  throat when he was almost 7 years old.  He took preventative antibiotics for probably 3 years.  At one point we took him off the antibiotics -we didn't want ds on more meds than necessary.  Unfortunately, he developed asymptomatic strep (we think from exposure to a teacher with strep).  He went on to have his worst bout of OCD ever.

We don't have any experience with HBOT, but I am aware of it's usage.  Have you read any promising studies?  

Overall, a PANDAS dx doesn't do much for you - except explain the onset.

[url]http://intramural.nimh.nih.gov/pdn/web.htm[/url]

[url]http://www.latitudes.org/forums/index.php?showforum=1[/url]

[url]http://www.autismweb.com/forum/viewtopic.php?t=15225&sid=728bef7614c08f1317e17967b3921d30[/url]

There is a lot of research and information to wade through if you have time.  I used to spend a lot of time on it, but I've backed off quite a bit in recent years.

post text: This is timely. My son had a sudden explosion of over the top OCD behaviors over the last several days and this morning he tested positive for strep throat. This is the third time this has happened. No tics just sudden extreme OCD.

Supernova, would mind sharing what preventative anti-biotic your son was put on?

I don't think my son has Tourettes, and he's diagnosed with Bipolar 1-mixed episodes/ADHD. He'd never met the criteria for any type of ASD and it's never been suspected by school staff or our private doctors. My son has great social and communication skills with peers-he relates well and interacts with them, and enjoys/seeks out this socialization.  Is PANDAS supposedly evidence of some type of ASD? or can it co-exist with ADHD or Bipolar?

If I understand it correctly, when the step cells attack the body, something misfires in the immune system and the immune blood cells actually attack the Basal Gaglia which fires up the ODC, Tics, etc? Is this accurate in laywoman terms?

Does it disappear during adulthood?

Our p-doc refused to try Lamictal on our son because she suspected there was a PANDAS like thing going on, and said he'd be at higher risk for the rash. He's on Lithium which worked out good anyway.

Sorry for firing off so many questions. We are the midst of this very thing right now.

Regards,

Jami

post text: The ASO titer is complicated. It just isn't a great test. On its own, it isn't helpful AT ALL. I had an ASO titer of 1500 (reference range 150-200) when I was in college, and never had any psychiatric symptoms. When a kid has other psychiatric diagnoses prior to a high ASO titer, it can be pretty hard to figure out whether the ASO titer has anything to do with the psychiatric symptoms.

post text: The [url]www.latitudes.org[/url] website has several forums, one of which is devoted to Tourettes and PANDAS.  Latitudes focuses on CAM treatments.  I have looked at the forum in the past and found it helpful as there are indications that PANDAS or something like it could be part of the problems our 9 yo has.  For example, there is a recent post on Zithromax and PANDAS.

Cliff

post text: Thanks for the link it looks really interesting

post text: [QUOTE=jamison]

Supernova, would mind sharing what preventative anti-biotic your son was put on? [B]He's allergic to Penicillin - which is usually the first choice.  He's been on both Azithromycin (Zithromax) and Erythromycin long-term.[/B]

Is PANDAS supposedly evidence of some type of ASD? or can it co-exist with ADHD or Bipolar? [B]No, PANDAS isn't correlated with ASDs as far as I know.  My son happens to have Asperger's, but most kids with PANDAS don't have an ASD.  Almost all ofthe research concerning PANDAS relates to a sudden onset of tics and/or OCD.  In my son's case, he had tics, OCD, and mood sx occuring all at once.  He also experienced other new sx like handwriting changes, clumsiness, and separation anxiety.

You may want also do research on PITANDS - which concerns infections other than strep.  There are some that feel that mood disorders, anxiety disorders (aside from OCD), ADHD, anorexia, etc can be triggered by PANDAS.  However, I stress that this is very far from proven - just theory and conjecture at this stage.[/B]

If I understand it correctly, when the step cells attack the body, something misfires in the immune system and the immune blood cells actually attack the Basal Gaglia which fires up the ODC, Tics, etc? Is this accurate in laywoman terms?  [B]That is a good basic description.  The immune symstem creates antibodies to the strep.  Instead of fighting the strep infection, they go after the basil ganglia. [/B]

Does it disappear during adulthood?  [B]  I don't know.  I haven't heard this at all.  By definition PANDAS can only [I]initially[/I] occur in children.[/B]

Our p-doc refused to try Lamictal on our son because she suspected there was a PANDAS like thing going on, and said he'd be at higher risk for the rash. He's on Lithium which worked out good anyway.  [B]I have no idea why having PANDAS would make a child more likely to develop a rash or SJS.[/B]  

Sorry for firing off so many questions. We are the midst of this very thing right now.  [B]No problem at all.  I wish there had been more information available when we first started our journey several years ago.  Be forewarned, there are many skeptics when it comes to PANDAS.  [/B]

Regards,

Jami[/QUOTE]

Good luck sorting things out.  Update us along the way, if you don't mind.

post text: While pandas is specific to strep, other infections/toxins can activate the immune system too. Immune system activation is one of the areas our dr looked at and found the Th2 side to be over active. Strep was not an issue, but several of his antibody titers were high, and even though he was vaccinated for chickenpox, no antibodies showed up.  The GI system and the immune system are intertwined too- which is why diet can make a difference if something is intolerable, or gut flora is off. Antibiotics raises a flag to monitor the good bacteria.

  The connection we found with immune dysfunction  and effective results from lithium seems to support the finding:

"These data suggest that rapid cycling bipolar patients may have mild immune activation which seems to normalize with lithium treatment."

[url]http://tinyurl.com/4wpyvj[/url]

  By accident, Levi's lith serum level reached 1.6- discovered on a routine blood test. After finding it, we immediately dropped back down to about 0.9, but I did note significant progress at the high level. To my surprise, the gain seemed to hold after that.

[url]http://www.mc.vanderbilt.edu/reporter/index.html?ID=6041[/url]

".....Mirnics and colleagues have identified a surprising immune system activation in the brains of patients with schizophrenia and autism....

To her surprise, she found incredible changes in a specific set of genes in bipolar brains. The expression of these genes, which is involved in making the cellular ìenergyî known as ATP, was decreased in the hippocampus ó a brain region involved in learning and memory.

ìI liken it to your brain running on empty,î she says. ìYou don't have the energy reserves you need to draw on in times of stress.î

This finding seemed to correspond with the clinical observation that bipolar disorder often reveals itself during times of intense stress."

ATP is metabolized by the mitochondria- and is another area being researched.  

It's this type of research that has made me keep looking 'beyond the brain' for my answers.

Darryl

parent volunteer

post text: Super Nova and Darryl,

Thanks for your insights, information, and links. I will be touching base with p-doc tomorrow and see what her thoughts are.

Regards,

Jami

post text: Did the hosp do an AntiDNAse B test?

They had to send off for it its supposed to be back on Monday

 He took preventative antibiotics for probably 3 years.  At one point we took him off the antibiotics -we didn't want ds on more meds than necessary.  

I thought the same thing but they want him on IM Penicillin for life at the recommendation of the cardiologist I found out today they have called a consult with cardio to make sure he doesn't have heart issues

We don't have any experience with HBOT, but I am aware of it's usage.  Have you read any promising studies?  

Dr Harsch in New Orleans seems to be the pioneer in using it for kids he has started a study just before Katrina with a good group of kids but obviously that one wasn't finished. He recently released a book I am trying to find I think its called the Oxygen revolution but it looks promising especially with some prelim studies showing nerve and brain pathways regeneration

Thanks for the links I am sure they will be helpful!

thread title: Update on my DS 10 last few weeks
post text: Some of you know that the last couple months have been really hairy with my DS.  The last 3 weeks have escalated to dangerous levels.  Have had to call 911 three times in 3 weeks, 2 trips to ER, both resulting in eventually just sending him home.  Partly that is because the ONLY inpatient that will take a 10yo (and has beds) in my area is where he went last year...and we were not happy with it.  Behavioral mod hospitals DON'T GET bipolar - at least this one doesn't.

Saw a naturopath for first time Thursday.  She took blood for testing, suspects food sensitivies, suggested 2 new supps:  5-methyl-tetrahydrofolate (dad-wi using this too) plus "Trancor" described as "GABA and Glutamate Balance Formula" - containing B6, magnesium, Taurine, N-Acetylcysteine and green tea leaf extract.  We shall see.  She also gave him a one-dose homeopathic remedy she was hoping will calm the raging.  He was definitely better Friday, but who knows why.

Also ordered new amino supp being recommended by TrueHope - Total Amino Solutions (genesaliving.com).  They are getting really positive reports from EMPower users for this as an add-on.  Only weird thing is it contains GABA, which is normally a no-no for TrueHope.  The support person I talked to said TrueHope is working with genesaliving to possibly remove the GABA.

So now waiting to see if new supps offer long-term improvement and awaiting results of various blood tests.

Oh, also I've backed down on EMP based on TH support recommendation.

I will keep you updated with test results.  I'm very interested to see what comes up.

Liz

DS10 (EMP, Salmon Oil, Choline, Amino Supps, Lithium Orotate, P5P, Zinc...and whatever I've forgotten <sigh>)

post text: Totally know what you mean about behavioural hospitals not "getting" it. My daughter's pdoc said they are not good (at least the local one) for a REAL illness as opposed to drug problems and discipline/parenting problems. He felt that the one for behavioural problems might even traumatize my very sensitive child.

As for what may work for your child -- no one size fits all, is my motto. EMP helped my daughter but was not the only solution. She had multiple problems and it took a long time to figure out her gut issues. Maybe if we knew, the EMP would have worked without psychotropics, but we'll never know that now. And she has endocrine problems.

Anyway, normally, Seroquel + EMP is a "no-no" but that's what worked for HER as far as keeping her "stable" while we were in limbo about what were some underlying biological issues she had!

I just wish there was more sane diagnostic profiling (metabolomics and proteomics?), endocrine, immune function, nutritional, mitochondrial) so individualized treatment could be based on more definitive personal data, rather than one-size fits all.  

JMO

post text: Have you wondered about the lithium orotate? We have added lithium twice (microdoses) since transitioning off all other meds over the last 3+ years. Lithium--even as low as 1.25 mg wreaked absolute havoc on my son--we always thought it was the wrong balance--it was the wrong med period to put with EMP for my son.

We just started the Total Amino Solutions this week. So far, so good. My son still needs whey protein, but we have been able to cut the dose in half so far. It works much better. My son is also very sensitive to one of the ingredients in isolation, but it appears to be okay in this blend with it. So, the combination may have something to do with it.

I'm so sorry you are struggling so much. I really encourage you to talk to TH about the lithium orotate. We used that for a short time, but ultimately we found it much harder to handle because of the imprecise dosing and its high efficacy.

Just my thoughts. Ultimately, of course, you know best what is going on with your child.

Tally

post text: I am so sorry to hear about your struggles.

Keep in mind that as kids grow and change their dosing needs (even with EMP) can shift and so although EMP has the potential to stabilize a child it also can be challenging to maintain consistent stability over time as the child's metabolic needs alter with growth.  This was certainly true for our son.  We found that we constantly were having to shift and adjust dosages to handle his rapid growth during his early teen years.  

I also want to encourage you not to add or subtract too many things at once.  Otherwise it is difficult to find your baseline if things get worse rather than better.  If I have learned one thing with our kids it is that anything (even those things we think are harmless) have the potential to destabilize kids like ours with their sensitive metabolisms.  

BTW my son is one of those who needed lithium added to his EMP mix to really stabilize.  He currently takes 5mg of lithium, but has been on higher doses.  

Good Luck and hopefully things will improve soon.

Jistac

CAM Board Moderator

post text: Just thought I'd update all on DS10.   Basic blood testing came back, and the good news/bad news is there are no red flags.  Despite that we live in the great (GREY) pacific northwest, his Vit D was only very slightly low.  Normal thyroid, normal iron levels.  Only concern ND expressed was that is showed he is not eating enough protein.  She emphasized that he needs a protein breakfast...HA!!! I can't get him to eat ANYTHING in the morning, much less protein.  Food sensitivities test will take another week to come back.

Started DS on TAS, the new amino TrueHope is recommending.  I think overall he is somewhat more stable, but we are definitely not there yet.  I'm pondering right now what my next tweak will be.  

Liz

DS10 - 9EMP/4000Salmon/5 TAS/Trancor/B6/Zinc plus a tidbit of trileptal and a tidbit of lithium orotate.  Choline now PRN only.

post text: I am wondering if doing choline PRN is a good idea.  My own son was very sensitive to choline and withdrawing it was challenging and made things worse before they got better.  We had to withdraw it very slowly.  

I believe that choline acts on similar metabolic pathways to lithium and that starting and stopping taking it would not be a good idea.

Just a thought

Jistac

CAM board Moderator

post text: I am also a bit curious about the additional B6 and Zinc?  The EMP formula is very balanced and taking additional supplements could potentially throw off the absorption of the EMP or the balance of nutrients.  Did Truehope recommend the B6 and Zinc?

BTW, we adjusted my son's dosing to four dosings instead of three through out the day, inorder to increase absorption and to balance out some nutrients.  Our son's blood work came back a bit whacky.  Well I have to say I am shocked at what a difference it has made.  We also were able to decrease the number of pills he took because by taking the pills more frequently he was absorbing more.  The result was even more stability, especially later in the day which was always a problematic time for him.

Jistac

CAM Board Moderator

thread title: Welcome!
post text: We hope you enjoy our new message boards, there are lots of fun bells and whistles to try out  .

We are still in the process of moving over all of the archived messages but the most recent active discussions are available in our library (click the link in the yellow bar near the top of the page) or click <a href="http://my.thebalancedmind.org/library.htm?mode=view&did=17933&lid=5&wf=15788">Active Discussions Archive</a>.

Click on My Forum Settings above to set up your signature line for the message boards and/or to subscribe to threads. If you want to see what posts are new since your last visit, just click on "New Posts" or "Posts Today".

If you have any questions please post them here or email us at [email]community@thebalancedmind.org[/email].

Warm regards,

Nanci

post text: How is the process going to transition the old message boards?  I keep wanting to search on some old threads and remember they aren't here yet...Any update?

post text: Liz I think if you go to the main library link they are in there

thread title: Total Amino Solutions for Protracted Withdrawal
post text: Hi All,

I know there was a thread on here about protracted withdrawal, but I don't remember which thread it was. But, I thought this might be worth mentioning. My son who is now 12 years old has been on EMP for over three years, and it's been a challenging journey that has brought more success over the long term than we thought possible.

What I finally have come to fully believe is protracted withdrawal has been a beast for him. He appears to be ultra-sensitive to any trace of meds in his system. Anyway, his difficulty with protracted withdrawal prompted us twice to reintroduce lithium, which stopped the withdrawal but proved to be very challenging to figure out, causing toxicity at very low doses that included loose stools and diarrhea that also then eliminated the EMP.

We've been hobbling along with whey protein every two hours every single day and activated charcoal for particularly strong med releases that eased symptoms within 1/2 hour.

Last week, we started TH-recommended Total Amino Solutions (TAS). While we are still figuring out optimal dosing, the difference in clearing out all the old meds is pretty incredible. I know it is early since it has only been six days, but the difference is remarkable. My son's strange OCD behaviors, tardive symptoms, vocal and hand tics have decreased dramatically since we started giving it. He's much calmer and more focused. It's a dramatic difference. Granted, it may not last--I know that. This course of treatment has many ups and downs like conventional treatment. But, so far, the TAS works far better than Amino Fuel and whey protein. We've been able to cut his whey protein in half and all weekend, he went 3-4 hours between doses.

I wish they would have had this when he went through Abilify withdrawal two summers ago. What a difference. In a month, he will be antipsychotic-free for two years. That is something we will celebrate considering he started Risperdal at age 3 and was on at least one antipsychotic at all times until age 10. I think I might have to order a cake or something :rolleyes: That would certainly be a surprise for him!

Anyway, my son keeps entering life in more and more ways, and right now, I'm so glad we've kept our nose to the EMP grindstone.

Tally

post text: Oh Tally!  What a rock you are : )  Your son is so lucky to have you.  A cake by all means!

Good luck on your dissertation; school and all that the concentration and focus that takes - I hope you get more than a cake at the end of it - long spa in warm spot of your choice I think!

Rebecca

post text: Do you have a link for Total Amino Solutions (TAS)? Or where do you get it? How long is it to be taken for?

post text: [url]http://genesaliving.com[/url]    This is to the ingredient list: [url]http://genesaliving.com/files/TAS_Product_Ingredredients.pdf[/url]

Only had time to do a quick look, but noticed a few interesting things- it contains a few vitamins:

 the folic acid is a FOLINIC acid form- 3 capsules has 400mcg.  I've noticed a big difference since starting Levi on 2mg of folinic acid/day, compared to just folic acid.

  It also contains methylcobalamin form of B12; empower as far as I know still uses the cyanocobalamin form. The methyl form is more bioavailable.  3 TAS caps have 60mcg.  I give Levi about 2mg/day of the M-B12.

FWIW- Levi's dr's was against us using a multi-amino product.  His take is that too many aminos can be counterproductive too, by changing the uptake ratios between the ones needed and those more easily integrated. He explained it as they all stand in line, single file and are let in one at a time. There may be only one or two that are really needed inside, but all the others in line get their turns as well, so the balance can't change as easily.  We had an amino acid analysis done, and a formula compounded to meet his needs (it contained 9 of the 22 aminos). Recent retesting  is showing most of his levels are sufficient now, though the neurotransmitters are still low. We stopped giving amino supps except for L-5-hydroxytryptophan 250mgs/day, and L-tyrosine 2500mgs/day. (three TAS caps has 150mg L-tryptophan and 132 L-tyrosine, for comparison)  

Another supp Levi takes (vitaline Superoxide Dismutase) provides 100mg each L-Glutamic acid, L-Cysteine hydrochloride, and glycine. The TAS uses the N-Acetyl Cysteine form for cysteine.  

Darryl

parent volunteer

post text: Hi

We just placed our first order of Total Amino Solutions.  They were very helpful on the phone (similar to staff at True Hope).  I had a lot of questions about dosing, etc. pertaining to my daughter's situation.  On the website, genesaliving.com, there is a link that you can email Dr. Smith any questions about the product/use.  He responded quickly, and it is great to know that there is support from a Dr. in using this product.

post text: Just want to point out that Dr. Smith is a chiropractor, not a medical doctor.

post text: I also have recently started my DS10yo on TAS (4 days).  I wouldn't say the results are as dramatic as Tally's, but overall I am very pleased.  He only started at 3/daily so I think we have room to move up.  The past couple days in particular have been much better than the past few weeks...which is a wonderful relief.  I am very positive so far about it.

Liz

post text: The TAS continue to work very well for my son. We are still figuring out dosing, and he is still on less whey protein--whew. But, my son (12) is responding really well to these--beyond what I hoped--we're used to raised hopes and reality crash--happened eventually with every single med ever. We have figured out that that giving 3 during the day at a time is too much, and he will have bizarre behaviors--stemming from getting tired, we think. When my son has 5 EMP, 2 at a time seems to be a good amount. I continue to be be very pleased. Right now, he is taking 9 per day, and we will leave him at that amount. What is not set is when he should take them at school because I really like to know the effects before I add that in.

I am sure getting an individualized amino supplement would be very helpful. We just do not have the resources for that right now. If this does not hold its effect, we may go that route. But, for now, things are at a very manageable level for the moment--even more impressive considering it is spring, and spring mania has always been problematic. Of course, we have had a lot of snow through last weekend, so warm weather has yet to be an issue :)

Tally

post text: [QUOTE=dad-wi][url]http://genesaliving.com[/url]    This is to the ingredient list: [url]http://genesaliving.com/files/TAS_Product_Ingredredients.pdf[/url] [/QUOTE]

Is this then better for people NOT already taking EM Power?

[QUOTE=dad-wi]

We had an amino acid analysis done, and a formula compounded to meet his needs (it contained 9 of the 22 aminos). Recent retesting  is showing most of his levels are sufficient now, though the neurotransmitters are still low.

[/QUOTE]

Who did the testing, who did the result analysis, and who did the compounding?

[QUOTE=dad-wi]

We stopped giving amino supps except for L-5-hydroxytryptophan 250mgs/day, and L-tyrosine 2500mgs/day. (three TAS caps has 150mg L-tryptophan and 132 L-tyrosine, for comparison)  

Another supp Levi takes (vitaline Superoxide Dismutase) provides 100mg each L-Glutamic acid, L-Cysteine hydrochloride, and glycine. The TAS uses the N-Acetyl Cysteine form for cysteine.  

[/QUOTE]

So, this is not for withdrawal, but for maintenance? Sounds like he had testing for mitochondrial dysfunction?

I am just frustrated because I have hobbled together treatment for my daughter and she is doing OK, but could be better. It has been incredibly frustrating to get comprehensive treatment.

On a schizophrenia board, parents of young children get told, "Oh - just consult with an early treatment center".  The parents reported back--they don't treat young children. I called one out of curiousity to find if they would have caught the things wrong with my daughter if I [I]HAD[/I] taken her there. [B]NO[/B]! They DON'T DO TESTING!!! They just treat with psychotropics. So they would NOT have found her intestinal malabsorption, osteoporosis, endocrine problems, sleep disorders, nutritional deficiencies -- nothing. They just would have done the same as the pdoc--put her on psychotropics and ignored what was causing the symptoms!

The doctors admire what I have done for my daughter. Fine. That is supposed to make us feel good!!??  It is just frustrating!

I looked at a list of DAN doctors.  One in our state... and she is not an M.D.

We'll travel if it's a one or 2 time thing.

post text: "Is this (TAS) then better for people NOT already taking EM Power? "- Someone wrote that the TAS seems to enhance the empower, which is how I would see it too. The vitamins and minerals in the TAS are  low compared to what we give, and what is in the empower. It's from the synergistic relationships that the gains are made. We've had the advantage of doing some testing that has helped to identify some of the metabolic pathway blockades. It may be that TAS included enough of the cofactors one might normally need to make their product most effective. A more severe lack of the cofactors, whether that is from environmental or from genetics,  may be what part of the original problem was. If environmental, it may take additional supps for recovery. If genetic, the daily requirements may need always be higher to make make up for inefficient metabolism. I get the 'protracted withdrawal' , but I find it better to think of it as 'detox'. To me, detoxification is more inclusive, and it covers more than just the meds, accounting for environmental insults and pathogens. It also puts a focus on the entire elimination cycle, and supporting that as well.

Our DAN dr (Dr. J. Hicks, Pathways Medical Advocates) ordered the tests- some were outside labs- GDX (recent was the Optimum 1 test), Doctors Data, great plains testing, and others were done thru local labs, although they had to get special tubes/directions from the labs they sent the samples to for some of those, such as for serotonin and catecholamine levels. There was one day that 17 vials were pulled. One of the nurses remarked on the thoroughness. The same dr is the one interpreting the results- he seems to have specific markers he compares. It is not about just levels per se, but about the relation one action or cycle has with another. Many of the outside tests come back with an analysis and recommendation. He puts his own spin on those, relative to other conditions, and doses things accordingly.  For compounding some of our things, he used Muriel Pharmacy, and he works with other supp manufacturers to blend his own recipes. He prefers individual supps so he can tailor the amounts more. (I've listed them in my member 'bio')

  On his genetic testing, it showed he is good at metabolizing stuff, but weak in eliminating the toxins. That's involved his immune system. The result of that is oxidative stress, and affects the ability of the mitochondria to produce energy. So part of his therapy is to minimize the toxins, which is where diet and proper gut function come in,  and to support the cycles that were affected by them, especially the methylation cycles which affect the DNA, and using antioxidants. It's both recovery and maintenance.

 I understand your frustration.  Our regular drs have respected our going the biomed route, though haven't really helped with it- Some of our tests would be covered if an in-plan dr would order it. None have taken me up on my offer to have them consult with Dr. Hicks, citing not enough proven research is available to back biomedical therapy, even with Levi's track record in their hands. And they're the gatekeepers.

Darryl

parent volunteer

post text: A quick update:

TH talked about how the TAS was complementary to the EMP, and what I am seeing fits that, too, with my son. I am cautiously optimistic that the TAS is what my son with bp (12) needed to get through the protracted withdrawal/detoxification cycle--so much of what we see in him is like the side effects of the meds--we just don't know what else is coming out--I have wondered about heavy metals. But, the TAS appears to be a good match in pulling out what needs to come out. Vocal/behavioral tics are almost entirely gone--his body is much calmer, too--unless we miss a dose of TAS.

We are trying the weekend without whey protein, and so far so good using only TAS to pull out whatever is coming out. From what we observe, our son can go about 2 hours without TAS--the same as it was for whey protein.

I will say, too, that our younger son (9) has done very well on a low dose of EMP, serine, methyl-B12, DMG given each morning has really been a good combination from an ADHD perspective. He also takes a low dose of choline and inositol right before bed. He also seems calmer with 1 TAS added in two times daily, too. He used to be right on the cusp of needing special education services, but he keeps moving further away from that need--wherever it is they draw the line. But, I have no doubt in the steady improvement for both of my kids because of the daily supplementation route.

So, for my son with bp, he is currently on 20 EMPs daily with two TAS given every two hours. No negative side effects observed yet--only positive ones.

I will continue to update this thread--right now, I'm thrilled. It's May, and we haven't seen a sign of the annual spring mania yet--knock on wood.

Tally

post text: The TAS ingredient list does not have whether it is gluten, soy, dairy and egg-free. Is it?

I see that it has Tryptophan in it. My daughter's pdoc said she absolutely may NOT have tryptophan while taking Wellbutrin and Seroquel because she could get NMS (risk of death).

How in the world do you safely transition off that (pmeds) while taking this if you can't take it until you are off, but you can't be off without severe brain repercussions (ie not sleeping, nightmares, severe depression and psychosis)?

-Naomi

post text: As far as gf/sf/cf/ef, Best would be to contact them and find out, though I didn't see anything in the 'additional ingredients'.

The truehope protocol is to wean off meds while titrating up on supps. I believe they have several methods, generally loading the supps fairly quickly, but also a slower one if dealing with psychosis.  With our Dan dr we followed a slower path, gradually adding in supps, while weaning meds. We took about a year to remove Levi's 5 meds. The philosophy of how this works is that as the supps go in and addressing metabolic issues, the meds that were compensating are not required in the same degree, or can possibly be counterproductive. Going thru the process, it was difficult to reverse the training to not raise meds when things went sour, but to instead lower them.  It was in fact the correct thing for us to do; lowering meds almost always gave us a positive step. (I say almost because we faced one anxiety issue that took a short period of using busbar when we removed seroquel).  We did this with the guidance of a DAN dr, a pdoc that 'got' our determination to try this,  and the assistance from parents that have gone thru this.  

  Tryptophan was not one of the first supps we used, it was probably added in 4 or 5 months after the probiotics, vitamins and minerals were added, as they are the cofactors in the metabolic paths. By then, things were already functioning better, and the meds were reduced to where the aminos could be added safely. After that, we began tweaking the aminos levels to support what was lacking. My understanding is that the serotonin meds can only manipulate the flow of serotonin, working with what is available. The serotonin is only there if there is sufficient precursors making their way into the central nervous system, via the blood brain barrier. If that's not happening, there is a shortage. Meds can trick the brain into thinking there is enough when really there may not be. When the body figures out it's been tricked, it appears the meds have 'pooped out', and a new scheme needs to be played out. I think the risk comes not from supplying the demand, but overregulating what will become an adequate supply.  From going at this from both pharmaceutical and  nutrient routes, I can see where the overlap could be an issue. Our pdoc was intent on using the most direct way, ie, meds, to regulate the serotonin. Our DAN dr has done the metabolic testing that suggested Levi was not getting adequate levels of the precursors to produce enough serotonin (I say suggest because the tests do not measure the cellular levels in the Central nervous system, but rather in the blood serum or by metabolites in his urine which may indicate inadequate levels throughout).

Darryl

Parent volunteer

post text: Medscape article on serotonin syndrome- [url]http://www.medscape.com/viewarticle/547426_1[/url]

Serotonin syndrome is a state of excess serotonin activity caused by therapeutic use, overdosage, withdrawal, or drug interaction of one or more serotonergic drugs (Mills, 1995). The mechanisms that result in such a depressants (MAOIs, SSRIs, and tricyclics), analgesics, hyperserotonergic state include an increase in serotonin production or decrease in serotonin metabolism. Boyer and Shannon (2005) identified medications such as antidepressants (MAOIs, SSRIs, and tricyclics), analgesics, weight-loss medications, antibiotics, over-the-counter drugs, street drugs, and dietary supplements as common serotonergic agents that could precipitate serotonin syndrome ( Table 1 ). Specifically, dextromethorphan, meperidine, tramadol, fluoxetine, citalopram, imipramine, and MAOIs have been commonly associated with severe cases of serotonin syndrome (Gillman, 1998).

  the brain/CNS holds about 5% of your serotonin, most is circulating in the rest of the body, the majority in the GI system.

 [url]http://www.life-enhancement.com/article_template.asp?ID=208[/url]  Reducing Aggression and Violence, The Serotonin Connection, By Lane Lenard, Ph.D.

post text: TH has a lot of experience with the withdrawal process. We learned a lot from them, but ultimately, I ended up going a much slower route based on what I was seeing with my son. Part of the problem was that I did not entirely trust what they said because I could not believe that it would work. Part of it was that my son is a very difficult case. For us, there was no easy way around the problems the pmeds caused. We are still dealing with it, but we can see the withdrawal come and go.

Tally

thread title: raw food diet
post text: My sister has been on ADs for years and we have a lot of bp in the family.  She has recently decided to go off all traditional meds and to rely on a raw food vegan diet with supplements.  Although she says she is feeling much better and doesn't need the meds, she is blowing up at her children.  :confused:

Part of me feels that if she had been on Lamictal instead of Celexa before, she would have done fine.  Part of me wonders what it is about the raw food diet (with lots of flax seed oil etc supplements) that makes her feel better.  She lives in LA and my father, after visiting there, said the air quality was enough to make him asthmatic, and he's never had those symptoms before.  

Her 9 year old has signs of bp, as do both of my dds.  The raw food diet seems completely impractical, so I'm wondering whether any of you have experience with it and what might be the thing that helps the most.  Is it the flax seed oil?  The food supplements?  Any thoughts?  

I'm very open to making changes, but I usually like to know why I might bother.  My sister changed everything all at once, so I'm not sure what might be helping and whether (given that she's on edge a lot) it is really helping or she's just hoping it is.
Joan

post text: Boy there are so many things that your post brings up.  I am not sure I can address them all, but I will try to hit the biggies:

Flax/Omega 3's do help with mood.  There is pretty solid evidence to support that.  Read Andrew Stoll, [U]The Omega 3 Connection[/U].  But Omega 3's can also be problematic for some with BP and actually push those taking them into mania if they are not managed properly.  So the answer is that the Flax might be helping and it might also be causing your sister to be a bit more explosive.  

As for Raw Food:  There is pretty good evidence that processed foods screw with brain functioning, especially food coloring, high fructose corn syrup and protein Isolates.  So eliminating these types of foods from your diet (which would occur if you were to suddenly start a raw food diet) could be beneficial.  

BUT:  It is very difficult to get a balanced diet while eating a vegan diet and it is not uncommon for Vegan's to have problems with deficiencies, such as Zinc or B vitamins.  And these vitamins are all very important when it come to mood stability.  Also vitamins are interdependent.  Just taking supplements will not always result in your body having the appropriate amount of that nutrient in the right place at the right time.  It made need an enzyme or a mineral to be ingested with it when it is taken for it to be metabolized properly.

My recommendation for you is regardless of whether you choose traditional meds or an alternative route for your children is to eat a whole food diet that is as Organic and Local as possible.  Eat seasonally and vary your kids diet.  Eliminate all sodas and candy and bad oils.  But most importantly ENJOY FOOD.   Food is to be enjoyed not to be obsessed over.  

Hope that helps you start to sort all this out.  There is a lot more info on this site from other knowledgeable parents who have done a lot of research to help their kids.

Jistac

CAM Board Moderator

post text: Thanks for your suggestions.

I'm lucky in that my girls actually like healthy food, and for whatever reason don't like soda or most candy, and so I've never been concerned about that.  The only "junk food" they eat are granola bars and ice cream and McDonalds with their friends.

What are protein isolates?

If the Flax/Omega 3's push toward mania, then it is not at all surprising that someone in my family would move in that direction.  So I won't attempt that with my dds.  Do you have other recommendations that help with the mania?

I agree about your thoughts about food.  We all love ethnic food in my family and the only one who is completely vegetarian is my dh because he had his gall bladder removed.

My older dd has the aggressive/agitated type bp, and she used to be a serious meat eater, as is my mother (with similar traits).  My younger dd and I are both more the depressive type with rapid cycling and neither of us ever crave meat and only rarely eat it.  Is this something you've seen in others too?

post text: The problems with your questions about meat eating and cravings is that it would be hard to make any generalizations based on just a few people.  The only consistent craving that I have seen among kids represented on these boards is the carb cravings that go with being unstable.  My son had those.  But my daughter who is also BP developed an eating disorder as a way of coping with the emerging BP.  So everyone is different.

I also think that everyone's metabolism is different and there may be a wide variety of reasons why some people have mood regulation problems on certain diets.

As for the question of controlling mania?  Well so much depends on your individual child.  If they are on meds then that is one thing.  If they are being treated just with supplements than that is another.  Omega 3's might be helpful if the child was on traditional pharmaceuticals.  If they are taking supplements then often small doses of Lithium and/or Choline are used along with a wide variety of other substances to deal with anxiety.

If you are interested in going the CAM route I would read the archives of this message board.  There is so much useful information that has already been written and I am sure you will find it interesting.

Jistac

CAM Board Moderator

post text: There are two types of Omega-3's (short and long-chain fatty acids).  I think Flax is a short chain fatty acid.  There are also two types of long-chain fatty acids (DHA and EPA).  There have been reports of mania induced with high EPA products (like Omega-brite) and with short-chain fatty acids (Flax).  There are many different formula's of Omega-3 on the market.  Everyone is different and may respond differently.  Because my son hates fish of all types, I give him Nordic naturals (2 capsules) just to make sure he gets some Omega-3.  A good, though bit old article is at:

[url]http://www.bipolarchild.com/Newsletters/0501.html[/url]

Nancy

thread title: Carnosine?
post text: Anybody ever used this one?  I was looking at it on autismcoach.com (I often look at biomed autism treatments, even tho my DS is BP).

Liz

post text: I am interested in this as well... but have also read that it should not be used if not needed (and how are we supposed to know whether or not it is needed?)

Even though my daughter has an appointment with a mitochondrial specialist set up... it isn't for over 6 more months! She has an appointment soon with a neuroopthalmologist to try to determine if her bizarre vision problems might in any way be moitochondrial-related. We also have an appointment set up with an integrative specialist. I am waiting for more input before putting her on it.

She will probably start taking it soon...

thread title: Nutritional aspects of child and adolescent psychopharmacology
post text: Here is an interesting article by Bonnie Kaplan and Scott Shannon:

[url]http://www.wholeness.com/media/Psychiatric_Annals.pdf[/url]

Kaplan was one of the first researchers for Empowerplus and is conducting clinical trials of it.  The article describes interactions between various nutrients in the body and pmeds as well as common defficiencies in people with psychiatric conditions.  

Nancy

post text: I've printed that one off, lots of good info there.

Rebecca

post text: Thanks Nancy,

Great Find.  I am definitely going to use this.

You guys are great.

Happy Mother's Day.

Jistac

Board Moderator

post text: Nancy,

This is great! I'm going to print this, too. A great resource--a copy is going to pdoc first :-).

Happy Mother's Day!

Tally

post text: Thank you so much Nancy for posting this.
This article is exactly what I was looking for!
Joan

thread title: Latest update on my DS10 - naturopath tests
post text: Well, we got the food sensitivity panel back yesterday, and my greatest fears were realized.  I knew in my heart that the way DS10 craved milk & cheese was a bad bad sign.

So overall the sensitivity panel was pretty clean - with the exception of dairy.  Milk was the top top food, followed closely by all it's relatives, cheese, casein, whey, etc.

Interesting note is that I had him on amino gold & amino fuel until recently, and both of these I now realize are derived from whey protein.  The new Amino I am using (Total Amino Solutions) is not whey derived and has no casein, gluten, etc.

He has a mild sensitivity to gluten & wheat, but the big one is definitely dairy.

Being the coward I am (I absoutely CANNOT IMAGINE trying to take milk & cheese away from him), I order Peptizyde from Houson Neutriciticals, an enzyme product which is supposed to (hope hope hope hope) resolve the issue and allow you to keep the foods in the diet as long as you also use the enzymes with every meal.

He has definitely settled down some in the last couple weeks.  I'm hoping for continued progress.

Liz

DS10

post text: My son takes peptizyde, for gluten intolerance.  I think it helps somewhat.  At least it seemed to help his digestive problems.  Did your doctor recommend it or did you start it on your own.  I found it on my own.  Doctor preferred the gluten free diet which my son (now 16) would have nothing to do with.

Do you know what TAS is made of, if not whey?  Also how big are the capsules?  are they similar in size to Empower?

thanks,

Nancy

post text: Nancy - I don't really know the answer to your question about TAS.  This is what the website ([url]www.genesaliving.com[/url]) says:

"Unlike amino acids derived from food sources, the free form pharmaceutical grade amino acids used to make Total Amino Solution require no digestion. Absorption is rapid and complete."

So what they don't really say is how they are derived, so I'm not really sure.

The capsules are I think the exact same size as EMPower.  Also unlike many supplements they have a fairly pleasant odor (at least I think so).

They also contain a few vitamins, minerals and L-Tryptophan.  I think Tally's son has been reactive to other versions of tryptophan but is doing well on TAS.

Liz

post text: We did several months of using Digest Gold and Vgest enzymes before starting gfcf, for the same reason of having to endure more limits. At that point, the suggestion was very strong to do the elimination. I was told that part of the problem is that while the enzymes help with the digestion, the presence of those foods still keeps the immune system activated. However, once things get settled, using the enzymes may be effective therapy. Having been on for over a year, we've been told occasional infractions would be tolerated, but less is still better.

  Is it more a lactose or casein issue? If it's casein, that protein stays in during the cheese making process, concentrating the amount.  Cheese has been hard to give up- I haven't found much for substitutions.

post text: The sensitivity panel does not specifically list lactose, only casein.  The most reactive was milk, followed next by whey and then cheddar cheese.  The casein was also reactive but lower.  I've also just started Ken on a probiotic.  Figure it can't hurt.

I'm reading a book called "Enzymes for Autism".  I'm not far into it, but I would say that at least this author would disagree about elimination being better.  She implies (rightly or wrongly, who knows) that unless you can heal the gut, elimination will just make your sensitivity shift to other foods you focus on, meaning you will end up eliminating more and more foods.

An interesting theory at least.

Liz

Liz

post text: Liz, what type of test is the sesitivity panel?  Is that different from

the IgG and IgE?

Christy

post text: The lab (usbioteklabs.com) calls it a "standard food panel".  It is the IgG test for 96 different foods.

Liz

post text: Liz

Thats good to hear your starting to see some improvements! I cant imagine life without cheese but if I thought it would make a difference I guess I could find a way!;)

Hope things get even better!

post text: Tally that book has an interesting theory on elimination diets.  And it does give one pause because lately there certainly do seem to be way too many people allergic to too many things.

I do wonder how much our guts are suffering due to living in an unusually hygienic environment and to eating food that is bad for it.

BTW, I know an adult who was recently diagnosed with Celiac disease.  The hardest thing for her is coping with the fact that she can never ever ever have wheat, spelt or bread again.  In fact she can't even have oats.  And they tell her not to cheat because those with Celiac who do cheat are at risk of developing certain types of cancers.  But as she said, once you finish grieving it really isn't so bad as she has found lots of things that she does enjoy eating and she feels so so so much better that she has no desire to go back to the way she was feeling before diagnosis.  I gather she got pretty sick.

post text: [QUOTE=jistac]BTW, I know an adult who was recently diagnosed with Celiac disease.  The hardest thing for her is coping with the fact that she can never ever ever have wheat, spelt or bread again.  In fact she can't even have oats. [/QUOTE]

Oats do not have gluten, and some are not grown even near contaminants, and say they are gluten-free for those extra careful.

My daughter (now 20) makes her own breads out of flour made of corn, potato starch, and other things. She says that feeling better is worth it. She cannot have gluten, dairy (casein), soy, eggs, and just a couple other things. That means that most gluten-free cookbooks were useless for her because they use other things, but she is doing fine.

Casein free is a hassle because most cheese substitutes use soy which she cannot have either....

But she adapted. I think about the doctor saying she lacked resiliency, and I realize that what he saw... her need for rules, consistency, order... and her ability to adapt by recognizing and meeting her own needs ("wiring") is actually a strength. I am not so sure I could have adapted as well as her.

But she stresses that adhering to the diet is not "no big deal". It IS a big deal, and should not be trivialized... but she has a strong desire to be healthy. She looks upon forbidden foods as poison for her.  Why would she want to eat poison?

post text: I know that oats technically do not have Gluten but Celiac disease is a serious condition where the Celia in the gut are flattened and the gut can no longer absorb nutrients.  And for some reason somebody who has had undiagnosed celiac disease for a long time needs to stay away from Oats for several years in the beginning.  I don't know the details or the reasoning.  I just know this is what them mom with Celiac told me.  But remember she was very sick before she was diagnosed.  In fact she was so malnourished that she started to have seizures.

Jistac

CAM Board Moderator

thread title: DS becoming very depressed - need advice
post text: Hi all,  I haven't posted in a while, spring time is crazy in my house.

The end of the year things were fine and dandy. Jan, Feb DS was doing

GREAT.  Then march came and everything started a downward spiral in school and at home.  Now he's even have difficulty in his after school program and could get kicked out if something doesn't change.  

DS started in with the occasional "I hate my life" in March.  At school once

he put a pencil to his neck saying "I hate my life",  that frightened everyone a bit.  Then he progressed to "I want to die" and last friday after a bad day at school, and then a bad time in after school program where we had to go get him and then he was grounded to his room, he begged me to kill him.

He's 8. This is freaking me out!!  

We stopped GF in April since obviously that wasn't helping.  Still dairy free.

He did have a traumatic event happen in end of Feb. that he didn't talk about and let anyone know about unil March. ( After the pencil incident at school I insisted that he talk to the counselor  and this "incident" came to light.)  Apparently during spring break DS had a play date with a friend and the friend touched him in a way that Jake didn't feel comfortable. (sexually) DS was very upset by this and would freak out at school when the kid was in class or would come near him.  Tried to get DS removed from the class but school district was uncooperative and since Jake's behavior was out the window, where was he going to go anyway.  So now Jake is constantly asking me to get him a new school and new bus and he hates his life.  The school year is almost over, we're going to hang in there.  No choice really.

It's gotten to the point I am frightened for his saftey and our pdoc suggested Zoloft.  I am seriously going to consider this.  At least maybe even just a temporary thing until I can get him in a better place (mentally and physically)

I wonder if the "incident" could have brought on the depression, the timing sure is right. Or maybe it was always there and now that he's not on meds anymore it's easier to see what his real issues were from the beginning.

I am so confused and I was wondering if anyone had any suggestions.

I also have an appt with dr. bock next week.

Christy

Jake, 8, p5p, b6, taurine, l-theanine, fish oils, 5htp, zinc, cal/mag, lithium orotate, vit c, pycnogenol, probiotics, enzyms.

post text: Christy

I'm not sure I have too much to offer.  We recently trialed our 9 yo son on Phospatidyl Choline but had to stop after we found it was pushing his mood too high.  Perhaps in moderate amounts this supplement could help counteract some of the depression your son is going through?  We tried the Natural Factors brand. Perhaps a different brand of fish oil - one higher in EPAs might help since it is widely considered to have antidepressant properties.

I'd hang in there until you see Bock.  If your son has already seen him perhaps you can call his office for advice?

Cliff

post text: You need an educational advocate or lawyer, because there is no reason why your son must be forced to be in a class with a child he does not feel safe with.  The school MUST find another placement or option for him, as his current placement is greatly impacting his ability to learn and is therefore not appropriate.

As for depression, our son had a lot of depression.  We eventually tried 5HTP (which he takes along with Carpidopa).  Our son reacted to an EXTREMELY small dose of 5HTP (.1mg)  .2mg of 5HTP made our son rage.  .11 mg of 5HTP made our son irritable.  So in our case our child is extremely sensitive to it. But that is apparently not the way it is with all kids as our pdoc was a bit shocked by the reaction he had going from .1 to .2.

Sorry hope things improve soon.

As for Choline I was led to believe that choline was more anti-mania and could contribute to depression.  We actually removed Choline to help our son with his depression.  Also could he be on too much Lithium.  Has he had his Thyroid levels checked recently?

Jistac

CAM Board Moderator

post text: I would agree that Choline is more for mania than depression, and in fact can cause depression for some.  Also wonder about the taurine?  I have heard that some individuals can reach a saturation point with taurine if they use high doses for a while.

I also agree that depending on the EFA ratio and dosages you are already using, maybe you could tip it more to the EPA side, which has more anti-depressant activity?  I personally have found with my DS10 that additional high-epa fish oil will definitely boost his mood (I have to be cautious to avoid activation too).

best to you -

Liz

post text: The saturation point of Taurine.. he's on 1000 mg. twice daily, does that sound like a lot or is it a personal thing where what's a lot for one is not enough for another?  Is that something where I could reduce it for a few days to get a correction?  

The fish oils, I just recent switched (about 1 1/2 weeks ago) to Country Life high EPA Mood balancing formula.  

My pdoc thought maybe I should just take Jake out of school for the rest of the year b/c of issues there.  I would really like to but being out of work that long is not an option.  I have my CSE meeting next week for a program review for next year.  I was going to ask to have Jake removed and placed in another school for the remainder of the year, even though it's only a couple of weeks.  I am trying to weigh the pros/cons of moving him out and making a transition for a couple of weeks versus staying put.  The options in my district aren't good at all but there are classes in other schools that the district has sent kids to many times so I know there are things out there.  And I do have an advocate that's coming to my meeting with me.  I need a crystal ball to look into and give me the right answer.     

Christy

post text: About the school situation, it might be worth setting up something new this year so you have some coverage over the summer, if that's an issue.  Most of the therapeutic schools have a required summer session because they know these kids will fall apart with all the unstructured time.  Then your child has a chance to adjust before the fall session.  At the same time, this only makes sense if you're comfortable with changing to a therapeutic setting for at least a year.
Hope your ds starts feeling better soon.
Joan

post text: My DS10 has never taken more than 1000mg total daily, but honestly I'm no nutritional expert; I just recall seeing somewhere online that you can "saturate" with taurine.  Like any supplement, it's worth reducing for a few days and seeing if you notice a difference.  It sounds like (?) you are not necessarily in complete crisis and can change one thing at a time?  I know I'm often reminded of that here, but frequently we are in such immediate crisis that I don't feel I have that luxury.  

As far as school, I think I would have another "go" at getting him at least out of the classroom with this other child.  I think Jistac is right that they are obligated to make sure he feels safe.  That's job #1 of the school (as they remind me frequently when my son acts out).

I'm curious what the total EPA & DHA dosage Jake is taking?

Also if you think anxiety is a big factor in his depression, perhaps check out the amino acid supplement Total Amino Solutions at [url]www.genesaliving.com[/url]. Many EMPower users are absolutely raving about how effective this is at calming.

Liz

post text: Hi Christie,

I see your son is taking 5HTP.  Daughter's experience with it was that it made her very mood swingy - very angry and irritable, but with times of suicidal feelings too.  Very similar to a/d.

P Choline made her very depressed.

Now she is taking lamictal for depression (100mg, but since she is on birth control the net effect is probably more in the 60 mg region) and I know there is a mom here - Jill - whose son takes it with EMP - a small dose.  My daughter  is also taking a blend of amino acids (based on neurotransmitter testing results) with small amount of kava, and doing really well.  

I can't give you the amounts of everything she takes as her naturopath is sorting it all out with daughter and only a small amount of input from me (e.g. [I]no[/I]5HTP!).   But based on our experience you might try removing the 5HTP and see if that helps.

It is so frustrating trying to sort things out, you have all my sympathy and I hope it settles down very soon.

Best,

Rebecca

post text: If 5htp is not taken with Carpidopa then it gets converted to serotonin in the body and little gets to the brain and the result is that one can have serotonin symptom which can include aches, pains, dizziness, nausea, depression and just feeling all around lousy.  So yes I would definitely consider removing the  5HTP or working with a doctor to get a prescription for carpidopa, but dosing of that can be a bit tricky so you would want to find a doctor that knows what he is doing.

post text: I had no idea about 5htp NOT getting converted to serotonin in the brain.  My biomed dr recommended it for sleep orginally about 6 months ago but it didn't seem to help, no where near as good as melatonin.  Since then we hadn't had any sleep problems but I started using it again (5htp) to possibly help with mood by trying to increase serotonin in the brain all with permission from the bio-med dr.   So this could explain why it didn't help or possibly made things worse.  But it doesn't explain the onset of depressoin because I didn't start using the 5htp until after my son held the pencil to his neck at school saying he hates his life.  He was giong to stab himself if they made him do the spelling.  I started the 5htp about mid-March.  In fact when I started giving it to him (right after that incident) 50 mgs in the afternoon, his behavior at school improved greatly for about 2 weeks and then continued it's gradual downward slide to where we are now.  About 3 weeks ago I tried going up one more capsule in the p.m. (100 mgs total) it made him tired the next day and even more depressed so I never did that again.  

In all the internet searching i've done "they" always say 5htp turns into serotonin.  I assumed they meant in the brain!  UGH

To answer some previous questions,  Jake is taking Lithium orotate (sp) which is over-the-counter, different than the other lithium commonly used for mood stabiliation.  10 mgs twice daily, which from what I understand is a REALLY small amount.

The EPA/DHA ratio is, Nodic Naturals Ultimate Omega, 650/450.  He gets that at lunch time.  And in the P.M it's Country Life Omega 3 Mood, 1000/150.

I'm not familiar with what others are using, does that sound like enough?

Thanks for all the input.  I REALLY appreciate it.  

Christy

post text: Hi Christie,

I know how frustrating and upsetting this all is.  Believe me, I know.  

You mention you have a bio med doc - do you mind sharing tests and results etc. they may have run?  We may be able to compare notes and find an avenue for you to explore.

Depression and bad reactions to anything that affects serotonin have been very typical for my daughter.  Since changing to a new naturopath, starting lamictal and, amazingly enough, hypnotherapy, she has had a 100% turn around.   I had to tell her yesterday that her dad is quite seriously ill, and she has handled it extremely well.  Since stress has always been a huge trigger for her, I am amazed she is able to do this, and it tells me that knock on wood the current protocol is working.  So maybe there is something in our collective experience that has helped us and that might give you some ideas.

Best,

Rebecca

post text: This is an update to my earlier post.  

We decided to give the Zoloft a try.  We went to see our DAN! doctor and told him what's going on.  He felt the Zoloft was the appropriate way to go.  With school being out right around the corner, he thinks Jake will be a different child in July.  It's been a few days on the Zoloft and he does seem happier already.  Discontinued the 5htp.  His teacher says he has more energy now..... I pray this doesn't turn into mania.

Also, DAN dr. noticed from Jake's last stool analysis that he doesn't have any

of the beneficial bacteria so he placed him on Mutaflor.  Has anyone heard of this? It's imported from Germany.   

Rebecca, I apologize for not resonding to your post.  Jake's testing was so numerous, I would not know where to begin or how to really interpret it.

I hope you weren't put off.

Oh, here's another tidbit I got from my dr appt.  In order to control Jake's ADHD, he suggested 1/4 to 1/8 of a 7mg nicotine patch.  Said there are actually case studies on this.  Wants to wait until Zoloft has a chance to do it's job first.  I'm not sure what to make of this yet.

Hanging in there for the long haul,

Christy

post text: Good to hear that things have improved, Christy.

It sounds like you have a doctor who you feel comfortable with who you can work with.  I think that is the first BIG step any of us have to make.  

One thing you can do if you have concerns about Nicotine Patch is to ask him for references about it being used in kids with ADHD.  And also ask him how many patients he has who he has used it with and what the success rate was.  

Obviously you will want to watch your son closely on the Zoloft, but you know that.  Sounds like you started off on a small enough dose that it is not going to be a problem.

Good Luck and hope things continue to improve

Jistac

CAM Board Moderator

post text: Good to hear that things have improved, Christy.

It sounds like you have a doctor who you feel comfortable with who you can work with.  I think that is the first BIG step any of us have to make.  

One thing you can do if you have concerns about Nicotine Patch is to ask him for references about it being used in kids with ADHD.  And also ask him how many patients he has who he has used it with and what the success rate was.  

Obviously you will want to watch your son closely on the Zoloft, but you know that.  Sounds like you started off on a small enough dose that it is not going to be a problem.

Good Luck and hope things continue to improve

Jistac

CAM Board Moderator

post text: A small amount of fluvoxamine always seemed necessary with Levi, and when we lowered his meds, we added in busbar for a while. For us it seemed like a means to an end.  Both manipulate the serotonin levels, and did make a difference.   It didn't take that much though, and too much luvox was nasty.

  If the gut bacteria is still that far off, there are enough ways the aminos from which the serotonin and catecholamines are being metabolized.

[url]http://www.healthknot.com/amino_acids4.html[/url] Optimum protein intake

  the link is page 4; elsewhere in the text it talks about individual aminos being limiting factors and 'values' of amino acids, and the synergy involved in the diet. After testing, Hicks had aminos compounded to accomodate the tested levels, rather than using OTC aminos. When I did use Amino Fuel, it was better at first, but then went downhill. Later testing showed levels close enough to not supplement other than the neuro precursors.

  With the gut issues straightened out, the L-5-hydroxytryptophan with the L-tyrosine seems to be working for Levi.  I'm still confused by the carbidopa add-on. Our dr didn't see it being an issue or needed, but maybe it is because of the tyrosine bing added. He said we would not get the results with just the 5htp.  From what I can figure, the carbidopa changes the metabolism of both dopamine and serotonin. It blocks L-dopa in the blood from becoming dopamine, and instead, keeps more L-dopa available to pass thru the blood brain barrier, giving the CNS more for dopamine.  The carbidopa also inhibits the COMT enzyme which breaks that dopamine.  Maybe Jistac can provide additional info if that is a factor.

  [url]http://www.rmdiagnostics.com/Product-Summaries/Catecholamine-ELISA-and-RIA-Immunoassays.html[/url] shows the metaboic path with tyrosine >L-dopa

[url]http://www.docstoc.com/docs/511375/Amino-Acid-Metabolism%20%20slide%20presentation[/url]

 Slide #43 shows the action of carbidopa on L-Dopa

thread title: Where to start?
post text: My dd is currently off of all mood stabilizers and antipsychotics. She is much improved. But we still have symptoms. About the same as she was pre bp meds. The day we started treatment for her Bp we had about 3 days of improvement and it was all down hill from there. She definitely was worse on medications. The medications seem to be activating for her, even in tiny doses.

So we are interested in some CAM's.

I am looking at starting the gluten/casein free diet. ( I see a lot of Autistic features)

But where do you begin with other things.

Would love any suggestions!!

Thanks Shelli

post text: Welcome to CAM : )

These books are a good start - healing the new childhood epidemics and changing the course of autism  [url]http://www.amazon.com/Healing-New-Childhood-Epidemics-Groundbreaking/dp/0345494504[/url]

A lot of folks here have had good success with a vitamin and mineral supplement called Empower [url]http://www.truehope.com[/url]  Some work with Truehope directly, and some with a pdoc or DAN Dr. to help with managing the vitamins and add-ons.

Some work with DAN dr or naturopath and do specific testing to determine the treatment (that's what daughter is doing now, see "update" thread.)  This will get you to a site for parent referals [url]http://www.generationrescue.org/angels.php[/url]

This will get you started, and I know the other parents will have good info and suggestions for you.

Best,

Rebecca

post text: Angel has been dx with Asperger's in addition to the BP and alphabet soup.  I was seriously looking at starting the GFCF diet for her but was advised by the doctors at Children's Hospital not to until it was confirmed she had a celiac allergy or gluten sensitivity.  I'm not sure if there would be a danger with the diet but they were set on the idea of letting her doctors do proper testing before I changed her diet.  In my case it appeared the diet would be a lot of changes & expense so it's just as well to hold off until I know if it is necessary.  Though I'm still going to avoid any orange or blue beverages as I have seen first hand they act like "rocket fuel" when my daughter gets them.

Nancy

post text: The reason NOT to avoid gluten before celiac testing is that the celiac blood work tests for antibodies to gluten. If you remove gluten from the diet before the blood work, the blood work will not be accurate. Once the blood work/other testing is complete, there is certainly no danger to removing gluten (other than significant cost/inconvenience of the gluten-free diet).

post text: thanks for clearing that up for me I wasn't sure why they didn't want me to switch her diet and what you said makes a lot of sense.

Nancy

post text: Although Gluten and Casein are problematic for some children, other children, like my son have problems with Corn and Soy.  And if you look at the ingredients in a lot of GFCF products they consist of corn and soy.  So I do think it is wise to see if there really is a problem with gluten and casein before pursuing the diet.  

Dr Sears in his parenting books spells out a very clear elimination diet where you eliminate almost every potential allergen and then gradually add things back in looking for reactions.  I have found this to be one of the least expensive and most accurate ways of testing food sensitivities.

Definitely there is no harm from eliminating all processed foods:  Foods with food coloring, food with synthetic sugars like High Fructose Corn Syrup, synthetic proteins like Soy protein Isolate and bad oils and fats.

Good Luck

Jistac

CAM Board Moderator

post text: Thanks for all your suggestions.

Who do I take my daughter to to see about testing for celiacs ect..?

post text: There are some links to resources here: ([URL="http://itsnotmental.blogspot.com/2008/03/important-links-to-help-our-children.html"]LINKS[/URL]) One of which is to [URL="http://www.enterolab.com/"]Enterolab[/URL] which our GP uses. It can tell you whether a gluten-free/ and or casein free/ and or other diet is needed. Not everything, but it, plus perhaps food allergy testing with an allergist, might be a great start.

By the time my daughter was found to have intestinal malabsorption issues, she had osteoporosis! The doc was rather amazed -- they tried giving her calcium plus vitamin D but she didn't absorb it. Her blood calcium level was so high from bones leaching out the calcium that her parathyroid was suppressed. It made us wonder if that's why the [URL="http://www.truehope.com"]TrueHope[/URL] stuff helped her so much -- the kid was malnourished!

She needs gluten free, soy free, casein free, egg free diet. Essentially - whole foods. She feels so much better!

post text: Thanks for the Enterolab info! Have you used this lab? Or know of any one who has?

I think I would like to go this route!

Thanks

post text: You can check out  [url]http://www.gfcfdiet.com./[/url]

On the page is a link to 'GFCFKids Forum' you can join-   It's been a helpful resource.

Another source for biomed info is

Autism Biomedical Discussion group for parents and professionals.

[url]http://health.groups.yahoo.com/group/abmd/[/url]

I read the info on Enterolab, and it sounds like a good test. I had read of the gene test, and I had thought that was even more conclusive than they are reporting. We used other tests to determine that the GFCF diet could be effective therapy, though we have not conclusively determined if in fact he has celiac's.  His blood plasma did not show the antibodies, as discussed in the article, though malabsorption was present, and incompletely metabolized gluten and casein peptides were found.

Darryl

parent volunteer

post text: Thanks Darryl.

I am really treading into unknown waters here. I am gonna need a lot of help!

post text: Yes, we used Enterolab. My daughter's GP likes it. I have met others - autistic-spectrum adults who have used it as well.

post text: Thanks!

Naomi can you email me about ur daughter! Her dx. meds, supplements, ect....if ur comfortable!

If not I totally understand!

post text: Shelli,

My 5yo daughter had "traditional" celiac bloodwork and biopsy when she was about 2. The bloodwork was slightly positive, but the test that would signify celiac was negative. The biopsy was negative. I tried GFCF anyway, and had immediate physical results (which is why we were trying it), and she is still GFCF, and corn-free, today. She continued to show other signs of improvement on the diet, which is another long story!

I've heard good things about Enterolabs for years. (I have a teenage daughter also). I haven't done any testing with them, though, as our insurance wouldn't cover it, and we couldn't afford it on our own at the time.

Either way, if you're going to have any testing done, definitely have the testing done BEFORE you remove any gluten/casein in order to obtain accurate results.

The orange/blue beverage thing -- sounds like food dyes. My other daughter can't tolerate red #40 in particular -- makes her rage, confused, intensifies emotions, etc. -- NOT GOOD! Blue #5 makes her happy-hyper. She tries to avoid all dyes.

post text: From what I understand, what the biopsy does is confirm damage, not susceptibility, so if tested early enough, it may not show. I was told  with the current test it's much like viewing dead muscle to confirm one's had a heart attack.

That's the reason for staying on gluten til test is done- less damage will be visible after avoidance.

Eliminating dyes and preservatives seems to be a side benefit of the GFCF diet- so many things that are offensive, are off the list anyway.

Darryl

Parent volunteer

Levi, 9, stable using biomed therapies (supps and diet, click 'bio' for details)

thread title: Omega Brite users?
post text: I have decided to start with the Omega brite fish oils.

My dd is 12 swallows pills just fine.

How many pills should I start out with a day?

How many boxes should I order to start out?

Thanks

post text: As with adding any medication I myself would start slow (1 pill) and increase as time goes on.  Knowing how many unused meds I've had to dispose of over the years has taught me to only get one bottle or package to start off with.  I'm also not knowledgeable of the shelf life of fish oil but because it has the word fish in it I would want the product to be as fresh as possible, just me LOL.  Good luck hope it helps with your child.

Nancy

post text: Good point about the freshness, lol! I had not even thought of that.

I went ahead and just ordered 1 box.

I hope it hels too!

Thanks

post text: There's only 60 per box and shipping is charged so, I order a case at a time. My daughter's pdoc had her take her take 6 per day (2 Grams) at 12 (It stayed that way -- she's 20 now). That means she goes through 1 box every 10 days. Incredibly expensive. He writes a "prescription" so it is at least paid via the pre-tax medical savings plan.

She takes them split into two doses.

post text: You might consider trying Country Life Omega 3 Mood Formula.  It has a similar ratio of EPA and DHA Omega 3s. (BTW, these are the compounds that you supplement when taking Omega3s.)  The Country Life supplement is considerably cheaper.  Our son was using Omega Brite.  When he switched to CL we did not see any significant change for the better or worse compared to Omega Brite.

Also of note, our son also takes Salmon Oil, another source of Omega 3s but with a different EPA to DHA ratio.  We find that he needs both to get significant benefits, which in his case include a reduction in raging.

Cliff

post text: Nice to know u can order them by the case!

Did ur Pdoc start your daughter off on 6 a day or did u work up to that dose?

What else does your daughter take?

Thanks for the tip on the cheaper brand!post text: Shelli,

I just want to share that Omega Brite has been known to be more of a benefit to people who tend to have more depressive episodes than manic ones.  I have heard it said that this can increase mania in people who are more prone to mania than depression.  I believe that has something to do with the 7:1 EPA:DHA ratio than the more common 3:2 ratio.  However, as I am just sharing what I have heard, you may want to check this out further. My ds has successfully been taking Omega Brite for about a year now.

Kaylee

ds-17

post text: Kaylee thank you for the warning! Oh I hope it helps her and does not activate her!  Part of the reasone we are trying this is all the meds made her worse. It seemed liked the meds would work for about 3-4 days and then just stop and she would quit sleeping and get manic.

Thanks for the heads up!

post text: Hmmm... I guess that is not by the case (the EM Power is)... We just buy a large number of boxes at once.

We did the OmegaBrite first 2 for a week, then 4 caps, then 6. Quickly. She had so many symptoms of fatty acid deficiency. Same as thyroid deficiency. Turned out -- she had both. Low thyroid and intestinal malabsorption.

My older daughter gets her fish oil for just a couple dollars because the pdoc gives her a prescription for the pharmaceutical kind (Lovaza) so insurance (medicare) pays for it.  I think she did better on the OmegaBrite.

As for what else... a LOT!  And some of it may not be applicable to your child. For instance she takes a lot of Calcium + Vitamin D for osteopenia (was osteoporosis), supplements for sleep, Tyosine for T4->T3 (thyroid) conversion, and Extra B5 & Vitamin C for adrenal support (low cortisol), & CoQ10..

She takes E.M. Power... Vitamin E....

It costs a fortune but she'd be dead or without much of a life if we had not gone this route. It upsets me that insurance pays only for stuff that is not yet OTC and comes from pharmaceutical companies.

Here's more about Omega-3s:

[URL="http://itsnotmental.blogspot.com/2008/02/fish-oil-and-favorite-brands-of-omega-3.html"]"Fish Oil": $$ and Favorite Brands of Omega-3 Supplements[/URL]

[URL="http://itsnotmental.blogspot.com/2008/02/omega-3-fatty-acids-fish-oil-dha-epa.html"]Omega-3 Fatty Acids (Fish Oil): DHA, EPA, and How Much is Enough? [/URL]

[URL="http://itsnotmental.blogspot.com/2008/01/brain-health-omega-3-fatty-acids-fish.html"]Brain Health: Omega-3 Fatty Acids ("Fish Oil") [/URL]

post text: Naomi thanks for sharing your info. about your daughter.

Also for the links!

I hope we have success too!

What happened when they tried to treat your daughter with traditional meds?

Thanks

post text: [QUOTE=shelli]Naomi thanks for sharing your info. about your daughter.

What happened when they tried to treat your daughter with traditional meds?

Thanks[/QUOTE]

:D I'm working on that book... literally!

She had some permanent damage to her vision... lost some cognitive function... got osteoporosis... by end of high school could often not walk without assistance.... Because they were not treating her biomedically... they were not treating the underlying biology that caused everything to begin with!

Her reaction to the SSRI was immediate and astounding. But they kept increasing it as her body (brain included) continued to deteriorate. Once she had a "mental" diagnosis, they could just ignore the elephant... everything was either "mental" or side-effects of the meds given for the "mental" issue.... and this was even though she didn't have psychological problems. Then of course, the "mental" diagnoses kept escalating... till it reached "schizoaffective." You have to understand -- this was over a decade ago when they started her on that first psychotropic--the SSRI. We didn't have the resources we have now.

But even today... we STILL have trouble getting appropriate help. I am thankful for at least a couple doctors who stand by her.

post text: Oh that is awful.....

My dd kept getting worse and worse on meds...

I hope we get some benefits from some alternatives.

thanks for sharing her story with me

post text: Just something I heard but thought I would pass along: If you keep the Fish Oils in the freezer it will help to cut down on the dreaded 'fish-burps'. :rolleyes:

post text: Coromega has pudding sticks like the Jello pudding snacks in a tube. I think it comes in Orange and Vanilla its a bit more expensive that way but good for the kids that cant swallow more pills its also my pdocs brand of choice

thread title: CAM Therapies to Promote Healthy Moods
post text: [url]http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=2329575[/url]

excerpt:

Mainstream therapies such as medications, cognitive behavioral therapies, electroconvulsive therapy and vagal nerve stimulators have been discussed extensively in other reviews 2ñ5. Furthermore, given the side effects and stigmatization of standard antidepressant medications, many families turn to complementary therapies. In fact, depression is one of the most common reasons adolescents and adults seek complementary therapies 6.

Therefore, the focus of this review is the fundamental lifestyle approaches and complementary therapies that enhance mental health, particularly those that help achieve and maintain healthy moods. The emerging term to describe the use of lifestyle and complementary therapies in combination with traditional, scientific medicine is integrative medicine. Integrative medicine is informed by science and is based on four core concepts:

-Patient-centered care (individualized, consistent with patient values and goals)

-Sustainable, healing environment

-Comprehensive approach to therapies

-Health promotion and wellness; promotion of the innate healing potential.

This is a Nat institute of health public access full text document

Darryl

Parent volunteer

post text: Thanks Darryl for sharing! Although its a bit wordy :-) it is really good to see

thread title: The Balanced Mind Foundation Chat sessions
post text: Be sure to read the announcement at the top of this forum about several scheduled chat sessions we will be holding over the next week.  Topics include a general chat, sibling issues and parenting issues.
 
Nanci

thread title: Schizophrenia Digest features Abram Hoffer
post text: Can vitamins help those that medications have failed?

 Writer Paul Forsyth jumps into a hot topic of scientific controversy as he explores this alternative medical treatment which aims to restore metabolic imbalances and deficiencies using natural remedies such as vitamins, minerals, hormones, trace elements amino acids and essential fatty acids.

Abram Hoffer's treatment philosophy continues to stir up controversy.  The term ìorthomolecularî was coined in 1968 by Nobel prize-winning U.S. scientist Linus Pauling, PhD, who worked with Victoria, British Columbia, physician Abram Hoffer, MD, PhD, to promote vitamins, amino acids, and minerals as treatment for mental illness. Pauling died in 1994, but Hoffer says that over the past 50-plus years, he has helped thousands of people with schizophrenia recover through orthomolecular medicine.

access to full story on orthomolecular approach:

[url]http://www.schizophreniadigest.com/e107_plugins/content/content.php?content.14[/url]

[url]http://en.wikipedia.org/wiki/Abram_Hoffer[/url]

ABRAM HOFFER, MD, PhD: 50 YEARS OF MEGAVITAMIN THERAPY

[url]http://weeksmd.com/articles/psychiatry/ABRAM_HOFFER.html[/url]

post text: Hi Dad,

You might remember me?  I am an old timer whose son started out with a BP dx at 17 and then ended up with schizophrenia. He is now 27y/o...

I thought you might find this link about folate and schizophrenia interesting.

[url]http://www.prnewswire.com/cgi-bin/stories.pl?ACCT=104&STORY=/www/story/05-30-2008/0004823232&EDATE=[/url]

I just started my son last week on a supplement of Panex Red Ginseng (200 mg)  [url]http://www.cbsnews.com/stories/2008/05/08/health/webmd/main4080752.shtml[/url]    

My has been on omega 3's for years ( Nordic Naturals) as well as a good multivitamin. He has been stable and happy on Cozaril with Zoloft, but I stay open to the alternative research and add supplements when there is a solid study with some proof that it helps some people . I make him tons of salads and stock his house with fancy waters and spritzers to help with the hunger issues.  

Hope all is well with you and everyone reading this. Love and peace TD

post text: TD, OMG good to see you!!  I can't believe your ds is now 27 and it sounds like he's living on his own??!!  I see he's still taking Clozaril.  How's he doing?  How are you doing?

Welcome back!

post text: Yes I recognize your name. Good to see you checking in.

Thanks for the links.

Interesting about the folate.  We've been working with a DAN (defeat autism now protocol) dr, and have gone from meds to supps. We had been giving folic acid (folate) up until about 6 weeks ago. Then we switched to folinic acid (L-5-methyltetrahydrofolate), an acivated form of folate. This bypasses the MTHFR.  It seems to have raised our ceiling a couple notches.

 From the link: "In individuals who carry the risk variants

of both MTHFR and COMT, lower-than-normal levels of dopamine in the part of

the brain called the prefrontal cortex may cause problems with information

processing and working memory."  We haven't tested the MTHFR, but do know the COMT is less effective, though a 'middle ground' variety. It does seem to be the combinations that tip things over the edge, and each time we support one of those problems, things straighten up a little.  The MTHFR status seems to be associated frequently with autism spectrum disorders, too, from what I've read.

Darryl

Parent volunteer

Levi, 9, using biomed therapies (supplements and diet- see bio for details)

thread title: What is Empower?
post text: I am just wondering what this is? i have seen many people list this on the

medication list. We are currently on Carbitrol and Risperadol.

post text: Empower is the name of a multi-ingredient supplement that contains a variety of micronutrients in it.  Or in simpler terms it is a multi-vitamin/mineral/herb supplement designed and created by a biochemist in Canada specifically to treat Bipolar Disorder.  The biochemist formed a non-profit company called Truehope that now sells the vitamins.

What makes Empower different than any vitamin mixture you buy at Trader Joes or Whole Foods or GNC?  Well if you ask the Truehope people they will say that it is the way they have bound the various vitamins and minerals together to create the product so as to maximize absorption.  

The creators of Truehope were determined once they felt they had a product that worked and was effective to get scientists and researchers involved.  They approached a woman named Bonnie Kaplan a PhD researcher at the University of Calgary.  Bonnie did some pretty limited experiments with Empower and some boys who were not responding to medication and was shocked to see how effective it was.  She and her team then contacted Dr Charles W Popper, the founder of the journal of Child-Adolescent Psychopharmacology and the author of the major textbook on the subject.  Dr Popper was not exactly convinced after their presentation that this was anything more than another souped-up placebo that somehow worked temporarily on a few kids.  But he left his meeting with Kaplan with a bottle.

A few days later found himself handing the bottle he had taken from Kaplan to a dad-psychiatrist of a very ill boy.  The idea being that it would be a placebo until they could get the boy on real medication.  But much to his surprise the boy responded better than he could of imagined anyone responding from a placebo.  And he remained well until the bottle ran out at which point he regressed. Dr Popper then took the bottle and went to the lab and created his own version of the supplement.  He gave that to the boy who responded yet again by getting better.   Dr Popper became convinced that there might be something to this supplement and so began a career shift as he too joined Kaplan in her quest to explore this treatment more thoroughly and systematically.

Almost a decade later they have an FDA clinical trial in the works.  But the trial is moving slowly and it will be a long time before the data is ready to be analyzed.

Meanwhile increasing numbers of practitioners encouraged by Kaplan and Popper's own experiences of using the vitamins clinically in their practices have started to support their patients who want to use them.  And many are impressed.  When Empower works (which supposedly it does about 60% of the time) it really really works.  When it doesn't work often one can get pretty good results by adding on additional supplements and sometimes tiny doses of medications.

There are some problems with Empower treatment, which is why there is a quiet enthusiasm for it among health care providers.  For one it seems to interact with other psycho-active substances resulting in these substances having a greater effect on the body.  A tiny amount of caffeine can be equal to many cups of coffee for somebody on Empower.  Alcohol and EMpower don't mix at all.  And Pot seems to be particularly bad if smoked while somebody is on Empower.  Often a patient has to be weaned off of psychiatric medications before being put on EMpower because the Empower interacts with the meds making the patient worse and more symptomatic.

Empower seems to be a good potential treatment for those committed to a healthy lifestyle who are willing to focus on getting regular sleep and doing the kind of care that is critical to stability.  

I hope that helps.  Feel free to ask more questions.
Jistac
CAM Board Moderator

PS you can read a lot of past posts in the archives on EMpower.  Many members have posted their personal stories about their experiences with this treatment.  Some are positive, others not so much.  Like any other treatment it is complex and the decision to use it should be made thoughtfully and carefully and ideally with the support of a health care provider.

thread title: Acupuncture Anyone?
post text: Has anyone use acupuncture with their BP child?  My 9 year old was doing well with it, in conjunction with therapy and meds, but then the treatments (which didn't involve needles as our acupuncturist won't use needles on kids) started triggering violent outbreaks.  She was subsequently hospitalized and treatments ended.

We have also done some "energy" work and used to have a homeopath as our primary doc.

post text: Personally acupuncture would have never occured to me as a treatment but it makes sense. Where there other issues at work like that caused your child to deteriorate? meds or maybe illness?

Can you tell me more about what the accupuncturist was using in place of needles? I am really curious? I love finding out about new things :)

post text: There were a number of posts about acupuncture in the "old" forums.  Does anyone know how to access these?  If so, we could give elisajz access to a number of relevant comments.  I tried following the "archive" link, but it leads to an a listing of threads on the current version of the CAM board.

Cliff

post text: I used to study tai chi with a master who was also a Chinese physician -- he knew all about herbal remedies and accupressure and accupuncture as well as tai chi, qi-gong and kung-fu.  

For children, the accupressure is more appropriate and probably just as effective.  I personally wouldn't trust anyone who wasn't a trained physician (usually Chinese), but most of them do know what they're doing.  Massage therapy can be just as effective, in the right hands.

post text: We see a Chinese Acupuncturist who is very well regarded in the Boston area.  Many leading MDs see him for their own care and he gets sent many very ill patients by these MDs as well.  He also teaches Acupuncture.

I have talked extensively with him about our son.  First when our son was younger and just diagnosed and more recently now that our son is older (17) and reasonably stable.

His answer is always the same.  He does not want to treat our son because he worries that the acupuncture could potentially activate him.

My son took up Akido this year, because in his words, "Akido teaches one to be calm even when one is feeling attacked."  Akido has been wonderful for him and definitely helped him progress in some areas that had previously been challenging for him.

I have also been told that DAHN yoga, a korean type of yoga, attracts many young bipolar women who credit it with helping them remain stable and being able to decrease their meds.  

Jistac

CAM Board Moderator

post text: I am a very strong believer in the effectiveness of yoga and the other soft martial arts as a means for achieving stability.  I have studied tai chi, hapkido and yoga, have found them very effective and see that they have been especially good for kids who tend to overreact.  There is even a move to start teaching these techniques to kids in prison so they learn how to breath before they act.

However, I would warn people away from Dahn yoga as it has the reputation of becoming a money-making machine.  People are often pushed to go to workshops they don't need or want, to work at the centers for free, etc.  The instructors often only have brief training.  I would only trust someone who has been practicing and teaching for many years with a master, preferably.  

I especially recommend Iyengar yoga for anyone needing yoga for therapeutic reasons (both mental and physical).  Patricia Waldman has made some nice videos if you want to get a flavor of the style.

post text: Joan funny you should mention Patricia Walden.  14 years ago my dh and I started doing Yoga at an Ivyangar studio in the Seattle area.  When my parents came out and visited we took them to classes.  My dad loved it and went home to MA and started taking classes with Patricia Walden.  For years he studied with Patricia.  But eventually he started to hurt himself trying to keep up with the 20-somethings in class.  My mother landed on Pilates which she does near where Particia's studio was (I think my dad said that the studio he used to go to closed).  These days my dad does water therapy due to his back.  But Yoga stretches are still part of his day.

Ivyangar yoga is great but one does have to be careful and have a good teacher who is able to monitor you.  Otherwise it is really easy to get injured.  I can't tell you how many people I know who have gotten hurt doing Yoga.  It seems so benign but really the poses are intense and if one is not careful and pushes oneself it is all to easy to get hurt.

I personally have never heard that about DAHN yoga.  But I do wonder if the push to do classes isn't what also helps the bipolar woman as it provides a social structure.

I myself did Yoga for years but found that my back and joint problems were often resulting in injuries.  I started Pilates and am

now able to be in much less pain and be more active as a result.  

I personally have found that in order for me to keep my mood stable (I am not BP but do lean a bit toward the depressive side) I have to do some form of aerobic exercise.  And for me it is really important to do that aerobic exercise outdoors.  XCountry ski in winter and cycle/run in fall,spring and summer.

thread title: Sleep
post text: My dd currently is on 0.4mg of Clonidine for sleep. She also takes Klonopin 1.5mg before bed for her anxiety.

She is still not sleeping through the night. Last night she was awake for about an hour. She always seems to wake up about four hours after she falls asleep.

Any suggestions for sleep? We have tried melatonin before and she had really bad dreams....and woke up any way.

post text: My daughter has a major major major problem with sleep. I always figured that if we could just fix that, half her problems would be fixed. We did all the sleep hygiene stuff we were supposed to -- light during the day, exercise, dark at night. Well... it took so many years to just partially fix it. Partly because I was too afraid to try "alternative" solutions until a doctor gave me permission, ... and her pdoc certainly advised against it. Finally he said go ahead and try melatonin. I couldn't say that helped.... Untill...

A doctor who is more versed in integrative medicine suggested extended-release melatonin plus a product called NutraSleep. With that simple change, she was able to make a huge cutback in the amount of Seroquel she took at night to sleep. Yes, however, she also needs the Seroquel. Like I said - her sleep issues are major.

She had a sleep study and she also meets criteria for narcolepsy, which we think of as sleeping but it can also cause insomnia. She's on treatment for that as well.

So the solutions can be simple... or complicated... depending on the situation.

Some short-term emergency solutions we used when she was quite unstable were a homeopathic remedy by Hyland's (It helped ocassionally) and an ocassional benzodiazapine when desperate.

She much prefers the way things are now with the supplements and less of the harsh meds with their side-effects.

-"Naomi"

post text: Thanks for the reply naomi!

I will look into the extended release melatonin. What brand do you use and how much does your daughter take?

Also where do you get the nutra sleep from and how much does your daughter take?

Thanks again!

post text: We get the NutraSleep from LifeExtension ([url]http://www.lef.org)[/url]. It is made by [B]Source Naturals [/B]and you might find it in a health food store. The directions say to take 4. She takes 2.

6 hour Timed Release Melatonin: Again, Life Extension sells it, but she can't take theirs (has gluten). We buy Source Naturals  brand - 3mg

I would love to add Tryptophan and other things, but being on the psychotropics she is on, we can't give that to her :-(   Maybe someday we can get her off... but sometimes I wonder if there is any hope of that after she has grown up with the psychotropics (Yes- she was on EM Power as well, but it is complicated).

post text: Where do u buy your supplements at? If you buy them online where do you get them?

I will have to buy online....there is no where around here that will have any thing like this!

thanks

post text: My dds both have problems settling down before sleep and a low dose of Seroquel has been helping them.  Melatonin unfortunately caused us all to wake up after about 4 hours of sleep, although the extended release form may be better about this.  The only advantage I see in using the Seroquel has been that is is also helpful with the manic behavior.  

PS, my dh who is an expert in sleep does have evidence that tryptophan works with insomnia, although you have to make sure you get it from a reliable source.
FWIW.

Joan

post text: PS, my dh who is an expert in sleep does have evidence that tryptophan works with insomnia, although you have to make sure you get it from a reliable source.
Joan

post text: My daughter takes a large amount of Seroquel. The extended-release Melatonin plus NutraSleep allowed the amount of Seroquel to be dramatically cut, but she still has to take it or else she gets horrific nightmares which she fears can quickly escalate to psychosis.

I wanted to have her try Tryptophan but the Pdoc said absolutely NOT while she is on Wellbutrin and Seroquel (which she takes) because the combo can raise serotonin too much and cause Neuroleptic Malignant Syndrome (NMS). Sigh. So we had to shelve that idea.

I would love to have a doctor locally try to safely change her to all naturals -- or as much as possible. She badly wants that. BUT... I have not found anyone. I am taking her soon to an Integrative doc in a nearby town (mid-June), but he is not familiar with everything she would probably need.

As for where I get the Source Naturals "Timed Release Melatonin" online -- I honestly don't remember. I just did an Internet search, compared prices and chose one.

post text: The developmental pediatrician recommended the GNC brand Melantonin 3mg time released for Rachel.  According to her the GNC brand works the best and it cost less then many of the other brands.  I like that I can find it in any "Rite Aid" store here in Michigan, it can also be purchased online at the GNC site.

Nancy

post text: I see from your post that you are in Michigan.  I live in the Rochester area and am looking for a pdoc for my dd.  I need to make a change quick.  Do you have any positive experiences you can share?

[QUOTE=helpangel]The developmental pediatrician recommended the GNC brand Melantonin 3mg time released for Rachel.  According to her the GNC brand works the best and it cost less then many of the other brands.  I like that I can find it in any "Rite Aid" store here in Michigan, it can also be purchased online at the GNC site.

Nancy[/QUOTE]

post text: Hi Shelly!  My ds 17 has recently been dx with bp nos depression and has struggled with insomnia for years.  While researching online one night I came across some research about bp patients needing a certain number of total dark hours in order to naturally produce melatonin.  (there was much more to it than I'm writing but I'm cutting to the point!)  Anywho--theyfound that blue light puts a stop to melatonin production therefore messing up our bodies natural built in clock.  They suggested getting these special yellow lenses glasses to wear two hours before you wanted to go to sleep and then putting on an eye shade (is that the correct word for it??!) to make sure that you have total darkness during the night and you would naturally start to sleep better.   Well, I ordered them not really thinking it would work and it was like magic!!  My son put them on that night and said he could barely get past the two hours before going to sleep.  Now he won't even think about putting them on if he has homework or whatnot to do as they really make you tired.  It's just a thought.  They are kind of pricey but it was well worth it for us.  I'm new to this site (actually I've been stalking it for a couple weeks not really sure how to post!) so I'm not sure whether I can give you the website or not but here it is---www.lowbluelights.com   I bought a lightbulb also (which were alot cheaper!) but I'm not sure that is really necessary.  My son loves the glasses---now if I could just get him to sleep in his bed instead of on the couch......:)  Ann

post text: Shelli,

My son went through 2-3 years of SEVERE night-time mania. He'd take his bedtime meds, at the time just Clonodine, fall sleep for about 4 hours, and then wake up. He 'd stay up the rest of the night euphoric, energetic, and getting into things he shouldn't. He'd get by on 4-5 hours a sleep a night. We were all so tired, because someone had to up to supervise him, for safety and too many things to get into or watch on TV. He didn't seem to need the sleep. His Kindergarden teacher would report wasn't tired at all the next day. He start ramping up and getting even more in the PM. It was unbelievable.

Friends and family advised me to discipline for getting up in the middle of night. They thought it was a behavior problem. I'm a SAHM, who gives this child intense parenting each day, but someone suggested he was getting up at night to spend time with me because he wasn't getting enough of my attention during the day, ARRG! They were so off the mark!

After a med wash in the hospital, they came up a combo of Lithium and Seroquel., plus he still takes Clonodine at night. His sleep problems have FINALLY - Praise the Lord!, been resolved. The Seroquel I think is the key. He now sleeps consistently from about 8:00PM - 6:30AM, like clockwork, and never gets up during the night.

post text: [QUOTE=jamison]. The Seroquel I think is the key. He now sleeps consistently from about 8:00PM - 6:30AM, like clockwork, and never gets up during the night.[/QUOTE]

Yeah... one more reason I am not sure my daughter will ever be able to get off psychotropics entirely... but who knows. As we discover more and treat more of the underlying biology.... never say never (note of optimism here).

As for people suggesting to you that it is a parenting issue... sigh. The ignorance has no limits. Even on major sites like one schizophrenia site, the verdict against us is that we cause mental illnss because we somehow sressed them out, abused, traumatized them... whatever. My daughter says that the only trauma and stress in her life were the symptoms from her own body/illness. Everything can be blamed on us. Sometimes I feel resigned to just be a whipping post.  I figure the blame against me isn't as bad as blaming and victimizing our kids... although they do that to... it is a behavior, or a character flaw. Or even... this astounded me... the belief that mind and soul are one, so this is like a defective, tumorous soul and when they die they die with this defective soul. Talk about not separating the illness from the person!!  I give up... Walk away.... Shrug.

post text: Bipolar kids tend to have severe nightmares regardless.

My kids have really gory, awful dreams, and with my first daughter's anxiety, it creates a real problem with sleep.

If you find the answer, please let me know! I need the same sort of advice!

post text: [QUOTE=Carina Silfverduk]Bipolar kids tend to have severe nightmares regardless.

My kids have really gory, awful dreams, and with my first daughter's anxiety, it creates a real problem with sleep.

If you find the answer, please let me know! I need the same sort of advice![/QUOTE]

That's just it... The Seroquel stops the prolonged horrific nightmares for her. We have found things that cause it though even while on Seroquel. Like she takes Singulair and it was prescribed to be taken and night--BAM--the nightmares came back. Switched the Singulair to mornings and it OK again. Advair (asthma med)--bad news probably because of the salmeterol.

At least she is only on 1/2 the Seroquel she was on a few years ago (675mg down to 325). But she can't go lower without the nightmares coming back. She has an appointment in a few weeks with an integrative MD ... we'll see, but I am not sure if we can do anything until we have her hormonal issues ironed out.

Anxious to see how others answer this.... what about those [B]nightmares[/B]??!!  Do they just go away when you fix everything else? Is that just part of healing and stability?

thread title: update on Brandon (sorry longer than I intended)
post text: Brandon was in the phosp for a month trying to get the cerebral palsy and autism stuff sorted out. In the mean time they took him off all his stuff vitamins included to see the "true extent" of the cp.

Within a week he was having full blown spastic movements to the point they did more test to make sure there were no seizures. Te neuro team and the pdocs got into a mini turf war over treatment and protocol which I thought was going to put me in therapy LOL but at the time it was no fun. They refused to give any type of vitamins ( I was hoping for a regular MVI but no) and refused to give him melatonin for sleep they refused to give him pretty much anything but a stim which made the spastic movements go thru the roof.

I finally got him out of there a shadow of his former self mentally and physically. He looked like a little refugee pale with dark circles he wouldn't even get out of the car on the way home. I will say he was compliant but the cost was too high so I tried consulting with the Dr's who refused to call back and I went ahead and returned him to his supplements with the Loxapine he was on before and within 3 days he was back to normal -a good normal for him!

So now we are at:

20mgs Loxapine

2 EMP

2 Vit E

650 Inositol

Probiotic

Melatonin for sleep.

Movement is under control not perfectly but he can walk eat and bathe! Behavior is probably 75% good and his personality is back. He is redirecting well and he has been promoted to 3rd grade with straight A's on his report card.

They wanted IM shots of penicillin every 3 weeks but I declined I am more concerned about a super infection at some point and I would rather treat it episodically and work on boosting his immune system naturally.

So I wanted to thank everyone here for all the things I have learned and for being such a great shoulder when we were in the trenches. For us it has really paid off!

post text: WOW Amy you have been through a lot.  Poor boy.  It is good that you were able to reset him.  It looks like you might want to seek out a doctor who is knowledgeable about integrative medicine to see if they can help you fit all the pieces together and get Brandon even better.

Lots and Lots of HUGS

Jistac

CAM board Moderator

post text: Welcome home Brandon!  So sorry you had such a problem with the docs.  I'm glad your little guy is back home and recovering.

Paige

post text: Gosh Amy, what a horrible experience for you and your son!  I am so glad that is behind you, and you both are doing better.  And I am also very happy that the men in your life are so supportive!  You're doing a great job.

Rebecca

post text: Amy,

I am so sorry for you and your son's experience in the hospital.  It sounds like an awful experience.   I'm glad that Brandon is doing better.  I wish I could offer some advice.  

Nancy

post text: Thanks! but if I hadnt been here before this hosp stay I would have pretty much lost him mentally he was compliant but not really with it so to speak so I owe much to what I have learned here :-)

post text: WOW!  What an ordeal.  I'm glad your boy is home.

thread title: Dad-WI ? about oxidative stress
post text: I know there was a thread on it before we moved and I looked and cant find it (probably right under my nose) but do you still have the info you posted about it?

Thanks!

post text: It may have been brought over in the library; I looked quick and didn't find it though. I'll go thru my notes and get back to you.

Darryl

post text: Here are a few posts on oxidative stress from ItsNotMental.com:

[URL="http://itsnotmental.blogspot.com/2007/12/mitochondrial-dysfunction-psychiatric.html"]Mitochondrial Dysfunction & Psychiatric Symptoms[/URL]

[URL="http://itsnotmental.blogspot.com/2008/03/stress-connection-meeting-hormonal.html"]The Stress Connection: Meeting Hormonal, Nutritional, and Metabolic Needs[/URL]

[URL="http://itsnotmental.blogspot.com/2008/04/inflammation-of-body-and-brain.html"]Inflammation of Body and Brain [/URL]

And some from schizophrenia . com

[URL="http://www.schizophrenia.com/sznews/archives/002935.html"]Mitochondrial DNA is abnormal in bipolar disorder and schizophrenia[/URL]

[URL="http://www.schizophrenia.com/sznews/archives/000874.html"]Cell's Energy System May Play Role in Schizophrenia[/URL]

post text: Thanks so much! Naomi I really appreciate it!

post text: Naomi,

You mention that your older daughter is taking Lamictal, Empower and Omega-3.  If you don't mind sharing, I'm curious as to the relative amounts of each that she is taking and how that is working for her.  Also, is she working with a pdoc or is she taking the Empower on her own.  

The reason I ask is that my son (16) is also taking 150 mg Lamictal, 3 Empower, 2 Omega-3, & peptizyde.  He is doing better than when taking Empower alone, but he is also in an RTC with heavy duty therapy/structure so that helps the stability too.

Thanks,

Nancy

post text: The pdoc did not "believe in" EM Power although it clearly helped my younger daughter, but at least he was more openminded about it when the older one told him she was getting on it.... espeially because she was unstable after 10 years, and had been through every atypical antipsychotic except Clozapine.

For guidance, she used the folks at EM Power's advice temepered with MY advice, combined with her own caution.

She is on 12 capsules per day (4x3). She is off the Abilify she was on (30mg) and her severe anxiety and akathisia slowly dissipated. She is more stable and less depressed, and not sleeping as much after lowering the Lamictal. I do not know the amount of Lamictal, but I can ask. I know it is less than before. She takes 12.5 mg Seroquel to help with sleep and a lot of Melatonin. The Seroquel makes her sleep longer, but she needs that "knock-out" effect.

Before lowering the Lamictal she was so exhauted that the GP sent her to a sleep specialist because the psychiatrist insisted that her tiredness would NOT BE FROM THE LAMICTAL, and told her she was NOT to lower it. She did anyway, and felt so angry that all those months of fatigue really was because she needed the Lamictal lowered.

She will remain on the Lamictal with the EM Power because so far, this is working for her. She had a major problem with depression, and she easily gets to feeling down... so I agree with not eliminating it. At least--not yet.

It has been about 7 months. After 10 years, this is nice to see.

My younger one has been on EM Power for many years (7 or so). She takes 8 capsules per day (4 b.i.d) It is too difficult to take them more often because she is on other meds (hormones) that require an empty stomach. In her case, she still had to take a lot of Seroquel (675mg), but was found to have intestinal malabsorption and low hormones (which took the doctors over a decade to figure out). Now she is down to about 325mg Seroquel... but that was due to hormones, diet change, and other supplements.

post text: Naomi,

Thank's for the information.  Now I remember you.  I'm glad your daughter's fatigue has lessened.

Nancy

thread title: Any ideas to reduce impulsivity?
post text: Hi all it's been quite a while since i posted.  My soon to be 17 year old son is overall doing pretty good on abilify 30 mg and vyvanse 70 mg.  The main issue we still cant seem to conquer is impulsivity which seems to be tied to mood swings every 6 weeks or so.  The swings are very subtle, usually will have a night or two of difficult sleeping some increase in mood and sometimes irritability then within the next week, he winds up joyriding in our car, sneaking out at night or getting high.  In between these times, these behaviors aren't present.  I talked to our p nurse yesterday and wasn't happy with the suggestion for med change to geodon which made him extremely groggy in the past.  So now I am wondering if anyone has an idea for a natural supplament which might aid in this area.  He already takes 3-6 mg of melatonin at night for sleep and the pharmacist is suggesting I try adding 500 mg of magnesium.  I am also wondering about inositol (sp?)  Any oher ideas out there????

Thanks

post text: It sounds like he is not at all stable if he is cycling every 6 weeks. If you can stabilize him it will lessen some of the impulsivity. Is he "getting high" on alcohol or drugs? He could be self medicating then, not to have "fun", but to try unknowingly to stabilize, or make himself feel better. Obviously, not a good choice.

I think you should have a serious visit with the psych and change or add to his current meds with an appropriate mood stabilizer.

thread title: free samples of Coromega (omega-3)
post text: Someone sent this to me it might be a good way to see if your child likes it without buying a whole box. Its my pdocs favorite/prefered brand

[url]http://www.coromega.com/06Free_Sample/form_consumers.html[/url]

post text: Great...thanks for the link

We were buying Coromega at Vitamin World this week and the guy at the counter let us try the Lime flavor when he saw us buying the Orange, so that's an option too.  (daughter like it, son thought it was too sour!)

thread title: Researching Intestinal Bacteria -Scientific American article
post text: This brought back to mind a thought I had earlier... If the body is so dependant on the bacteria we host, it's not just our own genetics mutating, but we are also at risk from their changes.. and we'd be the ones that need to subsequently adapt. Maybe another of the factors at play?

Jeremy Nicholson's Gut Instincts: Researching Intestinal Bacteria

The body and its intestinal flora produce chemicals with hidden health information, Jeremy Nicholson has found. Someday treating disease may mean treating those bacteria

By Melinda Wenner

[url]http://www.sciam.com/article.cfm?id=jeremy-nicholsons-gut-instincts[/url]

"Today the 51-year-old Nicholson is one of the worldís foremost experts on the so-called metabolome, the collection of chemicals produced by human metabolism. Whereas the genome provides detailed information about a personís genetic makeup, the metabolome is a few steps down the lineóit reveals how genes interact with the environment, providing a complete snapshot of a personís physical health.

Nicholson focuses on these chemicals both because little is known about them and because they appear to be highly relevant: recent research suggests that gut microbes play a crucial role in human health and disease. They help us absorb nutrients and fight off viruses and ìbadî bacteria; disrupting intestinal colonies, such as with a course of antibiotics, often leads to digestive sickness. In fact, Nicholson says, ìalmost every sort of disease has a gut bug connection somewhere.î

 ìWe have some evidence now that shows that if you mess around with the gut microbes, you mess around with brain chemistry in major ways,î Nicholson remarks. He currently collaborates with microbiologists to match metabolites with specific bacteriaóthere are thought to be 1,000 species and more than 10 trillion bacterial cells inside us at any given time."

thread title: Great Plain Labs &amp; diagnostic codes
post text: Great Plains Laboratories say that insurance will pay if the forms are sent with the right diagnostic codes.

What are the "right" codes? My daughter has over a dozen ICD-9 non-DSM-IV diagnoses in addition to the DSM-IV ones.  I just took her to an integrative med specialist to help us with more of the biological testing, amino acids and such. He is willing to learn to to try to help, but he isn't very familiar with vitamins/minerals & amino acids--he is more familiar with herbs.

There are NO integrative MDs in our fairly large city. NONE. There are only 2 in the vicinity (nearby cities) and one of them--the one more familiar with the amino acids-- is not taking new patients.  

So the guy I just took her to is holding off on even putting down a diagnosis for the visit until I let him know... what kind of diagnosis is "right"? Some of her non-mental diagnoses she has are intestinal malabsorption, sleep disorders, and endocrine disorders. We also have confirmed she requires a tremendous amount of B12 which--if would make her deficient at a "normal" level (this was found by an endocrinologist!) I guess that would be a bit like the genetic problems making causing some people require more Folate (vitamin B9) to be metabolically deficient ([url]http://itsnotmental.blogspot.com/2008/06/nutrition-genes-and-brain-dysfunctions.html[/url] ) (found in people with symptoms of 'schizophrenia') except in her case, it is vitamin B12.

Anyway... what should I tell him to put down?

And... when I order Great Plains Lab tests, will the forms tell us what the "right" diagnostic codes are for each that will get insurance to pay (At least we have great insurance).

This is so backwards to need diagnoses for the testing when the testing is to help with the diagnoses.

So... at least we already have proof that she has intestinal isuues, as well as endocrine issues, as well as some metabolic/vitamin issue.... so what "apropriate ICD-9 diagnosis" is supposed to get used?

Sheesh... sometimes I feel like I needed to have a medical degree before getting pregnant!!!

THANKS!!!!

post text: Are they doign the microarray assay (cDNA gene expression)?  If so, then the endocrine disorder code should be sufficient for most ins companies.  What code are they using for that one?

Peace,

Alyson

post text: [QUOTE=boomom]Are they doign the microarray assay (cDNA gene expression)?  If so, then the endocrine disorder code should be sufficient for most ins companies.  What code are they using for that one?

Peace,

Alyson[/QUOTE]

I did not see that test listed. Do you have a link?

For her endocrine problems, :o I honestly do not know the codes... just that they put down specific diagnoses, including some some that are not listed in any medical textbook, but have been verified by blood tests.... They are based on specific findings of the endocrinologist... so... gee... I guess I ought to find out. At the time of one diagnosis, the doc said there had only been 1 other case written up in medical literature, and it is what allowed the insurance to pay for growth hormone in spite of technically no growth hormone deficiency (it is complicated based on a deficiency most people have never heard of).

Others are more common--like central hypothyroidism, and idiopathic hypopituitarism, but I don't know what code is for that, either....

253 DISORDERS OF THE PITUITARY GLAND AND ITS HYPOTHALAMIC CONTROL

or maybe,

253.4 OTHER ANTERIOR PITUITARY DISORDERS

But what gets put down is the code for acquired hypothyrodism-Other, then they specify "secondary" instead of one of the above 253 codes which would more accurately express the condition.

???? I don't know... and do those cover...

255.4 CORTICOADRENAL INSUFFICIENCY

255.5 OTHER ADRENAL HYPOFUNCTION

????

What I see on the simple blood tests orders they just write 1 or 2 problems like "intestinal malabsorption".

It seems almost silly the haphazard way things get coded. Differently by each doctor.

post text: Naomi, I don't have a link to give you for this.  So sorry!  I'd have to find the paperwork on the results from my DD's test to get the lab name.  This is a test that checks the genome for any abnormalities.  The ped Neuro ordered it when they thought DD was having seizures and because there was an abnormality on the EEG.  

Have they suggested she have one done?  Insurance paid for this due to the circumstances of my DD's symptoms and disorders.  

Peace,

Alyson

post text: [QUOTE] Have they suggested she have one done? [/QUOTE]

Test are not usually suggested for my daughter. ONE endocrinologist we travelled to ran a slew of tests and found a lot wrong.

The GP has scheduled an appointment for her with a geneticist but the soonest available appointment date was in 6 months. 5 months to go. We know some pieces... like she has a vitamin B12 (Cobalamin) metabolism problem... not sure there are commercially available tests for that yet. But it may be a partial explanation for why EMPower helped her. I found places that do the MTHFR (folate) genetic tests but nothing for B12... anyone know?

Because of idiopathic hypopituitary issues hemochromatosis should be ruled out but no one medical is interested in screening her for that (no one in our families have that), but I guess she deserves that screening.

I found the nutritional genetics that sounds close to what you are saying... [url]http://www.healthanddna.com/nutrigeneticstest.html[/url]  and [url]http://naturalcompounder.com/natural-health-news/nutrigenomx-advanced-genetic-nutrition-focused-on-you/[/url]

But not exactly what you are saying... the microassay.

post text: for amino acid testing, this company offers a physician search: [url]https://www.neurorelief.com/index.php?option=com_content&task=view&id=237&Itemid=49[/url]

I don't know what kind of network there is though. We've done the testing through GDX.

It seems to me there were codes on the  test, similiar to what you've described; you could probably call Great Plains and ask them what codes would apply to the specific tests ordered. What we needed to submit were the diagnostic codes which differ from the actual procedures. Here a couple links that may help.

[url]http://www.talkaboutcuringautism.org/health-insurance/health_ins_reimbursement_tips.htm[/url]

Some of the diagnositic codes on our bills:

amino acid abnormality 270.9

food allergies 693.1

immune dysfunction 279.3

What the lab work has are specific procedure codes: [url]http://www.metametrix.com/content/DirectoryOfServices/CPTCodes[/url]

Darryl

post text: Got it!! THANKS.

Now... Anyone know the difference between the [B]Microbial Organic Acid Test [/B]and the plain [B]Organic Acid Test[/B]?

I don't know which one to select!

Thanks again!

post text: The GreatPlains OAT test

 [url]http://www.greatplainslaboratory.com/Organic-Acid-Test.html[/url]

sounds much like the metabolic analysis test we got from GDX. The microbial OAT looks to only do a sub-set group, and is part of the OAT. I would think you'd want the big picture.

In addition to the metabolic analysis, we've done the comprehensive stool tests, the gliaden test, food allergy,  and the amino acid analysis.  We also have done genetic testing on some of the genes involved with detox and the immune system (Genova diagnostics). We used GPL for some of the tests.  

This type of testing is considered alternative practice, so how it fits into a treatment plan is an individual decision. Likewise, the therapies derived from these test results depend on the aggregate understanding provided by the company performing the tests, and the practitioner administering it, and due to individual biochemistry, responses will be unique. Personally, I've found what we've learned has been beneficial, and has helped create a specific, productive treatment program for Levi.

Info from various companies offering testing:

Organic Acid Testing: An Innovative Preventive Health Test

"...abnormal concentrations of organic acids in urine provide functional markers for the metabolic effects of vitamin inadequacies, toxic exposure, neuroendocrine activity, and intestinal bacterial overgrowth." [url]http://www.newliving.com/issues/nov_2003/articles/debe1103.html[/url]

"The key concept here is ìdefective enzyme activityî. And, it is important to note that this does not always result, or present as an aciduria from an IEM. Defective enzyme activity exists in varying degrees of severity encompassing a spectrum of effects from severe to mild. Less severe cases of variant enzyme activity may be due to a number of factors in which the net result is a decreased rate of reaction of the affected metabolic pathway with consequent overspill of organic acid intermediates, from the affected

pathway, into the urine. Aging, oxidative damage, and nutritional inadequacy due to;

malabsorption, effects of pharmacological drugs, and abnormalities of vitamin/nutrient metabolism/utilization, may account for sub-optimal functioning of enzyme pathways having a multitude of effects on cellular health.

In vitamin-dependent or vitamin-responsive disorders, many of which are inheritable conditions, use of pharmacological doses of a vitamin, sufficiently overcome the metabolic blockage for normal function to occur with symptom resolution, in many instances." [url]http://www.usbiotek.com/pdfs/MarkOATLArticle-V6.pdf[/url]

[url]http://www.usbiotek.com/pdfs/OA%20Flow%20ChartV3.pdf[/url]

Organic Acids In Central Energy Pathways- the 'picture' - The compounds in green are the markers tested, comparing values gives an indication of proper functioning; chart shows where nutrients (vitamins, minerals, in blue) are factors. Not shown on this chart, and another potential roadblock, is the absorption blocking ability of heavy metals introduced into the cycles. (site homepage- [url]http://www.usbiotek.com/Services-UrinaryMetabolic.htm[/url])

[url]http://www.metametrix.com/resources/content/LearningCenter/Articles/Lord%202005,%20OrgAcids%20in%20Autism.pdf[/url]

[url]http://www.worldwidehealthcenter.net/articles-424.html[/url]

Darryl

parent volunteer

Levi, 9, Med-free one year, and stable using biomed therapies (supps and diet- see bio for details) previous stability achieved with 5 med combo

thread title: GFCF diet reactions
post text: Hey friends,

We have been GFCF for about 8 weeks now.  Just the past two weeks my 7yo son target has become more edgy, aggressive, defiant than he has in a long time.  The only thing that I can think of that has changed was starting this diet a few months ago.  He is on no psych drugs right now.  It's really exhausting.  I'm wondering if eliminating the gluten and casein has somehow unmasked other culprits.  Or the consequential increase in other potential problems has caused the difficulty.  Like a few people at a parents' autism support group I attended the other night mentioned soy and corn could be culprits.  They suggested removing both of those.  Darryl, I think I remember you saying that Levi had a difficult reaction on the GFCF diet because of corn.  

Also, we just got our first EMPower supplement in the mail tonight.  Haven't even opened the box!  I have such high hopes because Caleb has been struggling so much - esp. these last two weeks!

Kristi

Caleb 7, bp, aspergers, anxiety, nexium, melatonin

Ben 5, anxiety, SID prozac, melatonin

Zach 3

Bekah 1

Jamie dh

post text: Hi Kristi.  Going corn free was suggested to us at one point when we had a blip, though I don't know that it made that much difference. It had not shown up the allergy testing.  CORN SYRUP however is a culprit. A little sneaking in doesn't flip things, but something like a rootbeer float or lemonade made with corn syrup takes him (and us) down.

A couple thoughts-  The change in diet could be exacerbating nutritional deficiences. Things like calcium, vit.D, folic acid, and other vitamins and minerals that foods have or are fortified with, such as breads. Starting on the empower should alleviate that- If you are just starting the empower, I understand you should be in contact with TH for the dosing recommendations.

Another thought regards the nexium. Nexium decreases the amount of acid produced in the stomach. Certain mechanisms in the metabolism require specific levels of acid, so that could be interfering with the breakdown of food and consequent absorption. It's possible that being on the diet has changed the requirement for this med, and that it could start causing adverse effects. It's a possiblilty to ask your dr about.

Our dr has told me that some ASD kids require additional HCl acid to digest food, the opposite of what the purple pill does.  One of the causes of GERD is food not passing through effectively, with back-ups being the issue. Diet causing inflammation, gut dysbiosis, lack of serotonin which controls intestinal motility can all be factors.  We have found that probiotics have helped with these issues. Since finding out about these issues, I reach for the probiotics now instead of ant-acids.

Darryl

parent volunteer

post text: My daughter has nutritional/metabolic glitches we didn't know about. And EMPower helped a subset of those. You might want to test some things like his vitamin B levels, vitamin D, and cholesterol. ... Or hope EM Power fixes any of the nutritional deficiencies. There is also the TAS (Total Amino Solution).

post text: This is just a guess, but could he be going through 'withdrawal' from the foods?  It's my understanding that the undigested part of the gluten and casein act like morphine on the brain.  Some people experience significant withdrawal from it.  But I don't know the timescale for which this would occur.

Nancy

post text: Thanks you guys, for your insight.  I'm not sure about withdrawal or the nutrient deficiencies being exacerbated.   Is the Great Plains testing how you would test vitamin deficiencies?  Darryl, the type of GERD that Caleb experiences is eosiniphilic esophagitis, so I'm not sure about the role of stomach acid since it seems we don't really have the reflux issue.  I'm very interested in probiotics, but for the esophagus itself, it seems that once the supp got to the stomach the acid would kill it before it could help the esophagus.  Unless you could take it in applesauce or something like we do with the Nexium capsules.

Anyway, thanks again, all.  I think I'll for sure cut the soy and see if that has an impact.  I think soy is notorious in ASD, though I'm honestly not sure how predominant the ASD is for Caleb.  Thanks, guys!

post text: Hey Kristi,

I hope you find the culprit soon!  You are in my thoughts :)

Hugs,

post text: Thanks, Kathy friend!!  I really appreciate you!  The information I got on the probiotics is from an interview that you forwarded.  What an amazing moderator you are!!

thread title: interesting article on frankincense
post text: I thought this was an interesting article about the calming and antianxiety properties of frankincense.  

[URL="http://www.haaretz.com/hasen/spages/995159.html"]Incense on the Brain[/URL]

Enjoy!

tangles

thread title: GABA?
post text: Hello everyone--

My son was sort of dx last fall with bpll and started the med merry go round.  After he ended up in the phosp last month because of stimulants, I decided to take charge and try to get him off some of the stuff they had been throwing him on that didn't seem to be doing anything--more drugs, less stabilization, more drugs etc.  I guess I just got fed up!  He's off any stimulant and he's down by 50% on his AD with no apparent side effect--I actually think he's better now but pdoc thought I should leave it be at 10 mg. and start decreasing the risperdal which is the one my ds really hates.  I would really like him to be off the Klonipin too because of it's addictive tendancies and while he is still on a small dose, but right now we are weaning off the risperdal.  I had gotten samples from the nutritional store of a supplement called Theanine Serene with Relora.  It contains GABA, taurine, L-theanine, relora, and holy basil leaf.  The reason I went for it is that my son took the sample one day when he was extremely stressed (trying to stop smoking at the same time we were adjusting meds---not a good idea as much as I'd like it to happen!!) and that pill worked like magic on him.  He was calm and relaxed--just as much as if he had taken an extra dose of klonipin.  I guess I just wanted to know if anyone out there knows any more of these ingredients as I'm just starting the whole natural side of things and know some can make things worse if you aren't careful (just like meds).  I'd like my son to try emp but he is too afraid and won't get on board and we all know if they aren't on board it's just not going to work!  Also--if anyone has any ideas for helping him stop smoking I would appreciate it.  I think that is going to be our toughest battle but I know he would feel so much better if he could just kick that habit to the side.  It's his only vice but such a bad one for so many reasons--for him mainly the stimulant and depressive side of the nicotine.  Thanks for any help you can give us!  Ann  (p.s. His blood work is all normal and we had a food panel done that came back normal)

DS on 200mg Lamictal, 1mg risperdal, 1 mg. Klonipin, 5mg Abilify, 10 mg. Lexapro, fish oil, vitimins, Theanine Serene

post text: Hi Ann
Welcome to the complicated world of supplements.  Many of the supplements you mention are being looked at as potential contributors to the helping those with BP.  The problem is that all of the research on this is still in it's infancy and most of the information or data is still anecdotal or based on a clinicians experience.  There is a serious lack of solid data to help guide one with the supplement process.  One appeal of the EMP route is that overall it seems to have a high rate of success.  But that is the same appeal as the more conventional mineral supplementation of lithium.  

It is a difficult world to navigate on your own.  There is plenty of information on the web, but it can be tricky sorting out what is legitimate science and what is pseudo-science.  My recommendation would be to have you seek out a holistic doctor to work with on this.  Several parents have found doctors through the following organizations:
DAN (Defeat Autism Now)
SafeHarbor (alternativementalhealth.com)
APACAM (the working group on complementary and alternative treatments for the American Psychiatric association.  [url]www.apacam.org[/url])
Board Certified Naturopath's

Good Luck and feel free to keep asking questions.  The members on these boards have a lot of collective knowledge and experience that they can share.

Jistac
CAM Board Moderator

post text: Thank Jistac!  I will check out your suggestions and see where the roads lead me!  I'm very optimistic (with caution as always!) and will let you know how the journey goes.  It does seem pretty overwhelming but your suggestions will definitely help---thanks!  Ann

post text: I have no first hand knowledge of this but my moms doctor told her (several years back) nicotine would bind with vitamin C and help get it out of the system faster as Vitamin C is water soluble and extra is excreted in urine.

That said this was probably close to 10 years ago and he (the dr) was not into supplements but he was determined to get my mom to stop smoking. She used the Vitamin C that was like hard candy so I cant say if it was that or the actual C but she did stop for quite a while (then started again in a manic phase but that is a whole different story LOL)

post text: Hi Amy!  I have never heard that one before but believe me, I will be trying it!!  I was dumb enough to have him try the patch after he begged and begged and didn't even think about it being a stimulant (an extended release one at that)----he immediately went into orbit but luckily I figured it out (well, he did too) and ripped that baby right off his hairy arm--LOL!!  So now I told him we're going to have to try something more inventive and this sounds like just the ticket.  Thank you very much for sharing and I'll let you know how it works!  Ann

thread title: The Balanced Mind Foundation Looking for Family Interviews
post text: The Balanced Mind Foundation produces a podcast show for our [URL="http://www.depressedteens/"]www.depressedteens[/URL] site on a weekly basis. Weíre in the process of creating a show on the extended affects of depression and bipolar disorder on families of an afflicted person. We would like to interview approximately 5 or 6 different people that are family members of someone with bipolar disorder or depression for the show. The interviews will be standard, about 15 ñ20 minutes and will be woven in and out of each other to highlight different points that we want to make with the show, with the overall point being that mood disorders affect more than just the individual afflicted.
 
The interviews will be conducted by phone, and you are free to use a pseudo name to preserve anonymity. To hear some of our previous podcasts, go to [URL="http://www.depressedteens.com/"]http://www.depressedteens.com[/URL] and click on the 'Flipswitch' link.
 
If you are interested in participating in the program please email me at [EMAIL="nschiman@thebalancedmind.org"]nschiman@thebalancedmind.org[/EMAIL] with your name, email address, ages and diagnosis of children and any significant other family members. Please also include a paragraph or two on how your family has been impacted by a mood disorder.
 
Thanks!
 
Nanci

thread title: Chat Reminder 6/28 Parents with Bipolar 9-10 p.m. CST
post text: Parents with Bipolar Disorder Chat, Saturday 6/28, 9-10 p.m. CST

Hope to see you there!

thread title: Chat Reminder 7/2 12-1:00 p.m. CST Topic is Meds
post text: Come join us for chat, Wednesday, July 2nd, 12-1:00 p.m. CST

The topic is meds.

Hope to see you there!

thread title: Omega 3?
post text: Hello,

Can someone please explain to me how you or your kid has benefitted from Omega 3?  

What brands should I look at?

What is the approximate cost?

Thanks for any info.

-Steve

post text: Hi Steve!  I started my son on O3 about 6 weeks ago--I asked the pdoc if it would be alright with what he was taking and he was very enthusiastic about it---said he could take up to 6 and that it would really benefit him seeing that he leans towards the depressive side of things.  I have to say that his depression is much less severe--he still has bouts but they are never as low and he seems more positive all the way around.  Whether or not that is from the O3 I can't say for sure but it seems like it.  We get the Omega Brite brand online--I was giving him just some from Walmart that are probably fine but I had read someone else's post that uses the OmegaBrite brand and liked it so I just started buying that.  I think I pay $21 per box of 60 (plus shipping).  That only lasts us 10 days because I give him 6 a day (3 a.m. and 3 in p.m.)  The one thing I like about this brand is that they are smaller than what we had been taking so they aren't so hard to choke down!  Some people say that after you take O3 you can get fishy burps but my son can't burp (weird I know!) so it's not a problem for him.  Good luck--hope this helped!  Ann

post text: In the case of our son, adding Omega 3s reduced the frequency and intensity of raging.

As for brands, also conside Coutnry Life Mood Formula.  Same DHA to EPA ratio at OmegaBrite but at a much lower cost.

Cliff

post text: > [I]Can someone please explain to me how you or your kid has benefitted from Omega 3? [/I]

Here is how brains, in general, benefit from Omega-3 Fatty acids:

[URL="http://itsnotmental.blogspot.com/2008/01/brain-health-omega-3-fatty-acids-fish.html"]Brain Health: Omega-3 Fatty Acids ("Fish Oil") [/URL]

My daughter has been on it so long, and I honestlt do not know what specifically "behavior-wise" it does for her. But it is supposed to protect & rebuild her brain.

> [I]What brands should I look at?[/I]

[URL="http://itsnotmental.blogspot.com/2008/02/fish-oil-and-favorite-brands-of-omega-3.html"]"Fish Oil": $$ and Favorite Brands of Omega-3 Supplements[/URL]

> [I]What is the approximate cost?[/I]

Depends on the brand, but with the amount needed ( [URL="http://itsnotmental.blogspot.com/2008/02/omega-3-fatty-acids-fish-oil-dha-epa.html"]Omega-3 Fatty Acids (Fish Oil): DHA, EPA, and How Much is Enough?[/URL] ) it is not inexpensive.

thread title: Chat Reminder Tonight, 7/7, 9-10 CST Parents with Bipolar Disorder
post text: Come chat with us tonight!  9-10 p.m. CST

Topic:Parents with Bipolar Disorder

thread title: EMP, copper/zinc levels, other multi?
post text: I know this has been discussed in the past (Lydia I think?), but it looks like I have an EMP dilemma.  My son's ND did a hair elements test.  The good news is my son shows no mercury or lead toxicity.  The bad news is that his copper appears to be way off the charts (reference range: 9-30, his reading: 75).  He is NOT zinc deficient, but the copper load is throwing his ratio of Zinc to copper off as well (reference range 4-20, I've heard ideal is 8-10, his ratio 2.4).

EMP contains a fairly high level of copper, and not enough zinc to compensate.  So I will be looking at a replacement high-quality multi vit/mineral supplement.  Has anyone here succesfully replaced EMP with a different multi?  I'm scared to death that there is "more" to EMP than I'm seeing and that he will regress.  We had a really tough stretch in March and April and I don't think I have the strength to go through that again yet....

Liz

DS11 (EMP, plus a bucketfull of add-ons)

post text: Is this a Doctor's Data hair elements test?  How did your doctor determine mercury toxicity?  It's my understanding that you can't tell by the direct numbers.  A person could show low levels of mercury in hair and still be mercury toxic because their body is unable to excrete mercury.  The doctor who ordered the hair test for my son used the "counting rules" used by many in the autism community.  Google brought up this site for me which looks like it has a lot of information about hair tests and the counting method.

[url]http://home.earthlink.net/~moriam/HOW_TO_hair_test.html[/url]

I'm not sure exactly what the numbers for individual minerals on the test actually mean.

My son does not use EMP but we have had great success using many of the EMP ingredients as individual supplements.  He currently takes a GNC multi vitamin, extras of vitamins C, D & E; zinc; magnesium; calcium; a supplement that includes B6, B12 and folic acid; niacinimide; inositol; taurine; omega 3; and melatonin.  He also takes thyroid meds and 100 mg Lamictal.  He has been stable for the past two years.  And I mean really, really stable.

post text: I will contact Lydia off board to see if she can reply to this.  I am not sure if she is still a member or not.  Her daughter had this problem and basically she was told by the truehope people that over time the minerals in her daughter's body would eventually come into balance.  Lydia decided to trust them as she is a mental health professional herself and spent time on the medical conference calls that occur for doctors using EMP and so she felt comfortable taking this risk.  

Now as an aside my own son had some quirky out of whack blood work.  The first thing anyone should do when they get abnormal lab results is to have them redone because lab mistakes are so common.  If repeated tests show that things are consistently off then it is worth examining the dosing, which not only includes how many pills your child is taking but also how frequently your child is taking the pills.  We were able to decrease the number of pills my son was taking while also improving his absorption of certain things that he was testing low on by spreading the pills he was taking from 3 doses to 4.

I also would try to figure out if there is anything your child is eating that could potentially be interfering with their bodies ability to absorb Zinc.  Soy Protein Isolate actually interferes with Zinc absorption and many vegans find that they start to have trouble with hair loss because of this.  Interestingly when my daughter experienced hair loss because of eating too much soy protein isolate, her zinc levels in her blood always came out as normal.

Good Luck and as I said I will see if I can track down Lydia and get her to post a reply to this.

Jistac

CAM Board Moderator

post text: This may or may not help you..When my daughter began EMP, her zinc level was very low and the zinc/copper ratio was off. After 6 months of EMP, the copper crept up high (at the top of the range) and I was worried. Our dr did a 24 hour urine collection test which gives a more accurate level. It was safe. I called Truehope and spoke with David Hardy who expalined the zinc  and copper levels would balance out but it may take two years.  At the 18 month labs, they were both normal and have stayed there. I would call truhope and try to get him on the phone or speak with Taron, the biochemist. I would do this before making any changes. Or, your dr could call him. Lydia

post text: EMPower would not be advised for someone with Wilson's disease.

post text: [QUOTE=lydiar@uhs.umass.edu]EMPower would not be advised for someone with Wilson's disease.[/QUOTE]

And Vitamin C is contraindicated for a person with hemochromatosis.

And extra B vitamin is needed for a vitamin B metabolic disorder.

I honestly do not understand why more doctors don't screen kids with complex problems for these disorders. How can our kids get appropriate treatment without appropriate data (tests)?

post text: Unfortunately I don't think Lydia's situation is very analogous to mine.  My son is not showing any zinc deficiency, only high copper, and it's not a little high, it's VERY high.  My naturopath called yesterday and said she's been researching the impact of high copper.  Apparently it is part of a process that will convert dopamine to ephinephrine and norepinephrine.  So too much copper will deplete a "calming" neurotransmitter and increase "fight or flight" neurotransmitters.  Not good.

I find it interesting that pretty much every high quality multi offers a version that is copper free - but EMPower does not.  I think they should think about it!  At this point I will be transitioning him off the EMPower to a copper free multi.  I'll let everyone know how it goes.

Liz

post text: Liz

I seem to recall that the Pfeiffer Treatment Center website has some information about copper:

[URL="http://www.hriptc.org/"]http://www.hriptc.org/[/URL]

As well as this website:

[URL="http://www.nutritional-healing.com.au/content/condition.php?"]http://www.nutritional-healing.com.au/content/condition.php?[/URL]

Naomi

I think you really hit the nail on the head with your point about the lack of screening for metabolic problems.

Cliff

post text: I think that is a wise decision for now. I would love to know David Hardy's thoughts for general learning. If you have any interest, I could pass the labs by him if you want to forward the details to me. You are the first case I know about with this problem. I will be interested in knowing what you discover as the cause of the copper excess. [email]lydiar@uhs.umass.edu[/email]

post text: Thanks Debbie for the counting rules.  I agree that low mercury on the hair elements test doesn't actually tell me that he is not mercury toxic.  He actually didn't meet any of the counting rules, although they were all close.  I'm still not convinced. I still may opt for the french porphyrin testing.

Thanks again

Liz

thread title: EM Power &amp; meds
post text: I take EM Power and I have been able to keep my 8 year old son that recently was diagnosed with Mood Disorder NOS off meds by giving him EM Power. I have a 4 year old dd with EOBP & Seizure Disorder that takes 1.5ml Abilify, 875mg Depokate, and Melatonin. She is a fast metabolize so her Depokate level is not at a therapeutic level and most likely we will end up around 1000mg of Depokate before she gets in that 80 to 125 range. I have wanted to add EM Power to her mix of meds because she is far from stable and make the vitamin/absorption issue is her missing link. But I have been warned against it. Does anyone out there have any advice?

Also, I have a three year old that I have been advised to watch as having a possible mood disorder as well. She is not on any meds except Melatonin. I have also considered starting her on EM Power. What do you think?

I have a mood disorder nos diagnoses and take Lamictal. The kid's father is BP (untreated). The kid's chances of having some spectrum of mood disorder is some where around 70%. My thinking is if I can head off a full blown BP path with my 3 yo with the EM Power & stable environment then that would by my best course of action. (I also have a 2 yo with some extreme issues. I refuse to acknowledge this right now because I am still trying to figure out the first three with my 4 yo being very extreme. :))

Any help with thoughts on EM Power would be appreciated.

Kasey

post text: I have to admit, it is scary to put a kid that's on a bunch of meds on EM Power. My older daughter (adult) was on Lamictal, a tiny bit of Seroquel, and a lot of Abilify and still unstable and extremely anxious. She got on the EM Power anyway, and it was difficult... she got off the Abilify but was so sleepy from the Lamictal yet unable to quickly discontinue it. She has been slowly lowering it. So... she is on just a low dose of Lamictal now and the EM Power... and stable.... finally... after 10 years of psychopharmaceutical meds alone. So, for her, it was worth it.

My younger daughter was different. EM Power alone could not make her stable, and neither could meds alone. ogether, things were better... kept her at least alive and in a holding pattern until we figured out more of her biological underpinnings and addressed those.

So... yes... my younger daughter was on high dose of a "red-flag" med AND on EM Power. Now we understand that it was so fortunate she was on EM Power if only because of the high dose of B vitamins in it... my daughter is one of those kids with the vitamin B metabolic glitch (genetic)  ... maybe my older daughter has it also... she hasn't undergone the extensive testing the younger one has...

Anyway, that wasn't her only problem.

post text: It sounds like your situation is complicated given your kids genetic backgrounds and also their current health issues.  The nice thing about Empower is that there is a growing number of medical doctors who are comfortable using it clinically in their practice who would be better able to guide you in the complexities behind adding Empower along with meds or in giving Empower to a very young child as a preventative.

You might want to call Truehope and talk to Theresa and see if there is anyone in your area she can recommend.

BTW, many parents who have a strong BP lineage have used Empower as a preventative with their young children successfully.  The only concern I would have is making sure that you get the dosing right given the young age and the weight of the child.  Your pediatrician might be able to help you with that.  I would bring in the bottle with the list of ingredients and ask him how much he feels your child ought to take.

Good Luck

Jistac

CAM Board Moderator

thread title: 8 Brand New Sealed Bottles of EMPOWER Plus for sale~
post text: Hello

We bought a case of EMPower Plus for our daughter in the spring, to try and save money on shipping.  However, we have recently discovered that my daughter's condition is related to a hidden hyperthyroidism.  So we are no longer in need of these bottles.  If anyone would like to purchase them for a discounted price, please email me at [email]beverlymeyers@hotmail.com[/email].  Thanks!  Hopefully someone can get use out of them!!

post text: Thyroid levels. Congratulations on the discovery. It keeps happening. Thyroid levels were a part of my daughter's problems as well. When they first diagnosed her with "depression" they even said this was "[URL="http://www.ItsNotMental.com"]biological[/URL]". Well... If biological, why weren't they looking for the biology causing it? But that was over a decade ago, and I knew so little... Such a little thing to do--check all her thyroid parameters. But doctor after doctor did NOT. So they did not find her hidden hypOthyroidim.

But she had more wrong with her... and 4 years after finding that, they still haven't been able to fix her thyroid levels (but I think this time we are closer).

But... I there are even more basic problems.

Anyway... you are not the first I have heard things like this from. A friend's daughter was diagnosed with bipolar and it was anemia!!! Can you believe!!??

thread title: Chat Reminder with Dr. Mani Pavuluri, Friday 10-11 a.m. CST
post text: Don't miss the opportunity to chat with Dr. Mani Pavuluri, Friday, July 11, 1 - 2 PM CST.
 
Dr. Pavuluri is an associate professor in Child Psychiatry and the Founding Director of the nationally recognized Pediatric Mood Disorders clinic and Pediatric Bipolar Research Program at the University of Illinois at Chicago. She recently published the book What Works For Bipolar Kids: Help and Hope for Parents.
 
"Finally, a book about pediatric bipolar disorder that really gets it right . . . Given all the confusion about diagnosis and treatment, Dr. Pavuluri's book is a godsend for parents. Her writing is warm and welcoming, and her practical wisdom and common sense leap off the page."
--Peter S. Jensen, MD, Director, The REACH Institute
 
 
Hope to see you there!

thread title: Correct time for chat with Dr. Pavuluri is from 1-2 CST
post text: I'm sorry, I posted the original time. I apologize for any inconvenience this may have caused.

thread title: Join the call with Dr Mani Pavuluri on Friday 7/11/08
post text: I wanted to strongly encourage everyone to join the call with Dr Mani Pavuluri this Friday 7/11/08 at 1:00 central time.  I believe she is the first doctor invited to participate in the The Balanced Mind Foundation expert chat who is knowledgeable about micronutrient treatment! Let's find out what she is doing and chat about it afterwards.

post text: I may have misunderstood her but she seemed quiet againt vitamin therapy though she did say some people swear by it

thread title: Chat Reminder, 7/14, Parents with Bipolar, 9 p.m. CST
post text: Come chat with us, tonight 9:00 p.m. CST, Parents with Bipolar

Hope to see you there!

thread title: Chlorine?
post text: Can Chlorine trigger hyperness?  My son mentioned to me today that he always gets hyper after swimming.  He certainly sounded hyper on the phone.!  I wonder if it might be due to the Chlorine in the pool.  Have other people experienced this before?  I'm wondering if it is some sort of chemical sensitivity.

Nancy

post text: We've determined that chlorine is an issue with Levi, especially enclosed pools where you get both skin contact and the vapors. Anxiety and defiance both go up.

  In my reply yesterday under "consult with Dr. Papolos" I linked something about allergies- chlorine was listed. Pool chlorine seems to be an issue with autism spectrum kids: [url]http://www.danasview.net/chlorine.htm[/url]

 My thoughts were that somehow the chloride may be interfering with GABA, which is the major inhibiting neurotransmitter.  GABA uses chloride gated  pathway. Hicks wasn't sure if that would do it, but as an environmental toxin, there could be those effects.

       I just remembered I read something else in ref to PST enzyme.

[url]http://www.newtreatments.org/fromweb/sulfur.html[/url]

What could be one source of interference with sulfation? Swimming!

High concentrations of chlorate were detected in samples from a

number of pools; in one case as high as 40 mg/l. Higher chlorate

concentrations were associated with those pools using hypochlorite

solution as a disinfecting agent, while relatively low chlorate

concentrations were found in pools treated with gaseous chlorine.

Chlorate IS the biological substance of choice to block sulfation.

Additionally, chlorate is known to inhibit hematopoiesis [the making

of new blood cells], a problem with many of our kids. Additionally,

hypochlorite reportedly combines with any phenolic compound, even in

very dilute solutions, to form an aromatic compound that can react in

the body. This combining of chemicals can be very toxic to

susceptible individuals. One Mom found that an Epsom salts bath

immediately following eliminated after swimming problems in behavior.

So, if you must swim, do the bath immediately after coming from the

pool. For home pools, one Mother reports, "An ionizer cuts down

chlorine use by 70-80%. Since installing this, we don't see the

reactions anymore."

I believe the sulfation is one of the antioxidant paths... [url]http://www.nature.com/jid/journal/v126/n12/full/5700340a.html[/url]

[url]http://www.ncbi.nlm.nih.gov/sites/entrez?cmd=Retrieve&db=PubMed&list_uids=3459670&dopt=Abstract[/url]

Systemic depletion of inorganic sulfate secondary to utilization of this anion for the sulfation of drugs affects the availability of sulfate in the central nervous system and may, therefore, modify the disposition of certain neurotransmitters and other endogenous substances that are subject to sulfate conjugation.

For us it seems to be one of those additive factors.

Darryl

post text: We've not had this issue.  In fact, after DD goes swimming she comes home and showers immediately and naps or is completely calm.  I think it's mostly from the exercise benefits.  The public pool's chlorine level is checked and logged multiple times a day and anyone swimming can check it out if they choose to.  Sorry to hear your child is having challenges enjoying such a wonderful summertime activity.

Peace,

Alyson

post text: I've been swimming my whole lif