Still has a hard edge. Am I missing something
I have my son on 15 empowers, 8-10 aminos, 4000mg of Omega Brite, 3 Probiotics a day. The raging has slowed down and he is doing better. But still mean at times and not caring. Some days he is Ok but most days we experience some type or level of anger, meaness to his sibling or us, and the world revolves around him attitutde. It as though we are missing one element. THere is still an edge of frustartion with him.
I think the atitude may be a combination of us jumping when he says to do so. We want peace so much that we are willing to do anything. I know it is wrong But I do not know what to do. We are exhuasted. He refuses to see a psych. We have seen more of our share of them. None of them seem to understand bipolar or help. I am still looking for someone who can help. But, as I read the board. It seems that many of your kids are not exhibiting this meaness that comes with the disease. Am I missing something. I am slowly trying to work the sugar out of his diet. But he is not being agreeable. And the saga continues of wanting peace so you chose to lose that battlle
I am not a proponent of drugs but it seems on the other board that parents are trying or using lithium in small dosages. Does this help remove the edge. Should I explore this. I would hate to introduce a drug. But, I need to have some level of peace. OR am I wishing for something that will not come.
Willow
Hudson, age 10 Empower and True Hope protocol
My son still has this issue. He is more irritable and just nasty rude to me all day long. His rages are gone, but we still have this attitude piece that is so HUGE and my son has intensive in home right now with tdocs coming in home for 2 hours three times a week, but bc he does not trust anyone, we do not get anywhere. And motivation? Yep, he has NONE! WE are not doing the fish oils, granted we should. We see doc this week so I will be watching this thread as well for advice on us as well.
Have you done IgG testing yet? Diet can be HUGE on this and may be a cause, but we have already BTDT, currently on GFCFSF and a bunch other free diet and have been for a month now. Maybe yeast is still an issue for both of our kids? Mine had rx treatment for 15 days, but I hear that cannot be enough
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Kim 34 Co-Mod Military with Katie and Heather
brandonsmom_1996@msn.com
Army wife and BSW student
PLMS, Insomnia, Severe D-IBS, Special diet
Iron and Mirapex for PLMS, Lunesta, Zyrtec, SAMe
Brandon 15, BP 1, ADHD, Schizoaffective?, PDD?, IgG allergic gluten, casein, soy, eggs, peanuts
EMPower Plus 5 caps TID, AminoPowerPlus 4 BID, Vitamin D 10,000 IU/day, Garlic, Choline and protein shakes prn, Synthroid, Melatonin 6-12 mg
8th grade (held back) homeschooled-Meridell Achievement Center 4/28- 9/25
Chris, 34 dh since 9/10, Army
Cheeto the cat: Hyperthyroidism (radioactive iodine 2/8), Separation Anxiety, and Chronic UTIs, rx diet Mystic: The princess of the house and HATES Brandon
Jackson: Lab, DOB 1/13/11, training to be psychiatric service dog eventually
Fort Bragg, NC
FROM TBMF: Do not start, stop, or change medications or other treatments for yourself or your child based on what you read on this Website or elsewhere on the Internet.
Willow,
forgive me for not remembering how long your son has been using Empower. As you know it is a process. And we also experienced quite a bit of what you are experiencing with our son being mean and self-centered and frustration over the fact that we never had any expectations for him. He did not do chores and we thought a good day was when he got through it without any major explosions. I know it is challenging. But also keep in mind that given how sick our children are, medication alone is not going to solve all their problems. Many of our children have missed critical developmental stages due to their illness and they need therapy, support and help to pull them through. Also it is not unusual for our children to have learning challenges that can also cause them frustration, anger and problems. Those also need to be addressed. The problems you bring up are multi-dimensional and will take time and work on everyone's part to overcome.
Meanness and the sort of self-centered attitude often comes from a child having low self-esteem. And given the nature of BP it is not surprising that many of our children suffer from self-esteem issues once their mood stabilizes. Is your son involved in any extra-curricular activities? Does he have any interests that he might want to pursue with your support? How is he with his peers at school?
I totally understand your son's resistance to therapy. Our son was very therapy resistent for many years. It is even harder if you do not have somebody who has experience and knowledge about early onset bipolar. If you can not get your son into therapy I would look for support your yourself and any others involved in raising your son. It took me a while to learn with the help of our clinicians how to push back on our son's rudeness without triggering him but in a way that also made it clear that he could not abuse me or any one else in the house. We learned to be very clear with out son without being angry that there were limits. We learned how to convey to him that his anger and meanness was simply not OK and that he could not be mean and hurtful to his younger brother. None of that was easy. If you can not find somebody in your area to help you, maybe you could find somebody who would skype with you to work with you on this parenting issue.
All that being said...Lithium is actually not as much a drug as it is a mineral that everyone needs. There are trace amounts of lithium in our food and water supply and for some people that is enough. But many with BP need more. Our pdoc once told us that lithium probably should of been in the original formula but then it turned out that everyone seems to need a slightly different amount. Our son takes 5 mg of lithium total along with his Empower dose. We get it compounded at a compound pharmacy. But because of that small amount of lithium he also has to take thyroid (Levothyroxine).
Another possibility is that your son is not quite stable yet. He could need more Empower or he could need less. I would also look closely at the Omega 3 supplements. Our pdoc does not use Omega 3 supplements with his Empower patients because he found that it often triggered mania or contributed to instability with them. Also your son might need more or less of the Amino Acids. Or the pro-biotics could be too much. We spent many many appointments and years tweaking our son's dosage with our pdoc. It is not rocket science. Plus your son is at an age where boys grow rapidly. So what works one week might not work the next. You need to be prepared to constantly reevaluate and tweak things.
What I can share is that hopefully in time things will indeed get better. My son was a lot like your son. He was mean and self-centered and difficult to live with. HIs siblings resented the way the world revolved around keeping him calm. Today my son is 21 and I wish I could tell you what an AMAZING and AWESOME young adult he is. Words can not explain it. He is caring. He is sensitive. He is home from college for Winter break and there have been nights when I felt like a queen because he would get his siblings to help him clean up the kitchen after I made dinner. Slowly his relationship with his younger brother is healing from all the years when he would abuse him. He has expressed interest in his younger brother's accomplishments and asked him thoughtful questions about the things he does. We did not get to this place over night. It took a lot of time. Also our son is finally in therapy on his own terms. He realized he needed it when he went off to college as he was struggling socially. Therapy has helped him catch up socially with his peers. But remember he is 21. He is no longer growing and his brain is maturing. He also has had chances to have success academically and with his extra curricular and that has helped build his confidence.
Parenting these kids is complex. It takes time and a lot of work. One has to attack the issues from multiple angles and be willing to invent and rethink how you are doing things as the child grows and evolves. But hopefully with hard work you too can pull your child through.
--
Jistac
Mother of 3 (23,20,17) with a variety of mental health issues. Been involved with using Empower as a treatment since 2003
My daughter is a lot younger, four and a half and she has been on Inositol and Omega 3 (therapeutic dosage) for almost 2 weeks now. She has shown marked improvement with anxiety and her OCD issues but we are still seeing mood swings (much less severe now), irritability and mean "outbursts". Our world has always revolved around her from birth because she was such a difficult baby. She still thinks the world should revolve around her and is very self centered. I must say that it is improving just within these past 2 weeks but very very slowly. Even if the supps are 100% effective in getting her stable we are still going to have to pound away and work on four and a half years of learned behavior that is not always acceptable. But being stable will make it a little easier to work on the neccessary behavior changes, she's a lot more reasonable now.
To chime in with Jistac regarding the developmental stuff, it's so true. Even though she's still so young, my daughter missed out on a lot of developmental things in the early years that she is revisiting now. She was early meeting most of her milestones such as walking, talking, etc. She was reading at 2 and a half years old, but I attribute that to her OCD. She had to "master" everything she had an interest in at an early age. However, she wasn't interested in playing with toys or interacting socially with peers until 6 months to a year ago. Now she's doing things a 2 and 3 year old would have been doing when it comes to play and social skills. It annoys me sometimes but I try to be patient and remember that she had so much anxiety and so many rages that I guess there were some things she just couldn't focus on. It is a long process and so many at TBMF have reminded me of that. I also had to come to terms with there is no "quick fix" unfortunately. Logically I knew when we started the protocol we are on now that it would take a while to reach stability, but in my heart I think I was expecting a lot more. And when I started seeing improvement right away I really felt like ok this is it! Then I started seeing the irritability and mood swings raise their ugly heads again and it brought me back to reality that yes, this is a process.
Hang in there and wishing the best for you and your son.
Angela B
Simpsonville, SC
otboyd@yahoo.com
Hilary (DD)-4yrs old. Mood Disorder NOS, ODD. Supplements: Kavinace, Melatonin, Inositol, Omega 3, casein/dairy/gluten free diet
Gavin (DS)-17 months
DH-43 yrs old, Diagnosed with Dependent Personality Disorder, Depression, Anxiety with Panic Attacks
Me-40yrs old, No dx, no meds
Willow,
With our daughter, we have made it through this far with a combination of lab testing, oh my god we have to do something right now, several different doctor's opinions, and a lot of reading and pushing on my part.
The testing which we have done includes:
There are some others I'd like to do,
From these tests, we have seen allergies and reactions to most grains, candidia yeast overgrowth, and a intestinal permability. Now we are embarked on a diet without grains and limited fruit. The organic acids test suggested Q-10 was low, so we tested for it and are now supplementing with Q-10. The Carnatine, the methylmalonic acid from the organic acids test, and the histimine from the amino acids test were normal so we are not (currently) supplementing for methylation. We will likely be adding vitamin D after our next dr. appointment.
In addition to the testing, there is a lot of research on NAC (several posts describe), and given it's stron anti-oxidant and glutamate moderating capability it made sence so we added it. Note that we had intended to test for glutathione before adding NAC, although there was a huge mixup between our out-of-town naturopath, the lab, and the lab doing the blood draw. So we just added it. We started melatonin at night during Intuniv withdrawals and we haven't looked back. Inositol was added during withdrawals and we aren't sure about it. We tried a fish oil blend, it seemed to increase the rages, so we discontinued it (for now).
As far as meds go, the Intuniv was causing some of her difficulties about a mont ago, and on our own, we decided to taper it down. We are now at 1/4 of a 1mg pill. While we don't like fiddling with the prescription meds, we were between pdocs and it was either do something now or back to the hospital again. I don't think the resperidone is doing much one way or the other except causing a bit of a tummy. After we get the yeast and diet stabilized, we will start to taper it down again. The lithium seems like a good thing, and it will be the last to go if it ever does.
If you haven't already I would recommend reading all the archives on the CAM forum, and buy 3 books: Naomi's It's Not Mental, it was really our inspiration in that if Keri can make it, so can we. Dr. Hyman's Ultramind solution, while I dislike his writing style it gives several good ideas for a path forward. Lastly, Dr. Campbell-McBride Gut and Psychology Syndrome (GAPS) and the associated cookbook is all about intestinal flora and the foods we eat. In the end, I think a mis-balanced intestinal flora represents the real root of a significant portion of our daughter's symptoms. This is backed up by some of the things associated with her birth, an infection treated at 2 weeks old with antibiotics, no breast feeding, a huge appetite for all kinds of bready things, a repulsion for most healthy foods, and several lab tests.
Anyway, we are still working at it and have not yet solved the whole riddle (we will). I hope this post helps give you a few ideas for your son.
Brian
--
Daughter 7 BP/violent rages. Unsuccessful with multiple meds. Now reasonably stable (with a few regressions) on Risperidone + Intuniv + Restrictive diet + EMPowerPlus + AminoPowerplus + NAC + Q10 + low dose lithium + melatonin + inositol
Son (5) Normal
Wife (CathyK now also on TBMF) BP, & trying to wean off the meds.
Wow, I feel so blessed to have found this site and you guys. I am constantly crying. Brian thanks for breaking it down for me. What is NAC. and why did you keep the lithium. What does it do that helps. I think I need to add it. Not sure.
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Willow - Mom as sane as I can be
Hudson, 10 BP on Empower since Oct 2010, Omegabrite, Probiotics, 1000mg calcium,
Daughter 14 - Regular Moody Teenager- Great sibling
NAc stands for N-Acetyl-Cysteine. It is an essential amino acid required in our energy-production (metabolic) cycle. It is criticcal for our body's creation of glutathione which is one of the most important "ingredients" of our health. We need it to detoxify our body, which is constantly creating, consuming, and excreting toxins and toxic byproducts of metabolism.
Lithium is a natural salt - something which some parts of our country has more of in the drinking water, and some places less of. Of course, we often drink bottled water, filtered water, etc, anyway. Also, as with everything else, different people have different needs. Perhaps some people simply need more to be OK. I have come to the realization (with several doctors' insight) that I myself simply need more regular salt (the kind with sodium - Na+ and Chloride - Cl-) than average, so it makes sense that some other people simply require more of the lithium type (Li+).
I am always puzzled by why scientists say some women get "schizophrenia" after menopause which can be helped by giving estrogen, rather than just say those women have a MEDICAL condition -- low estrogen. It is just that SOME women apparently are very sensitive to that low estrogen, but most women are not. It is the same with progesterone. When we raised the younger daughter's progesterone to normal, it helped her heal and the last of her "resudual hallucinations" went away.
We are all genetically different, and have different quirky biological needs. My need for salt never was an issue until I quit processed foods, AND cut down on my salt, using more herbs and spices for flavor. I have other relatives who are like me. No surprise there - we share genes and ancestry.
--Jeanie aka "Naomi"
It's Not Mental
Older dd: formerly(?) teen-onset bipolar (morphed into ultradian cycling): "Recovered" after over 13 years - stable off psych meds almost two years. Now fine on just diet changes and higher thyroid levels (after healing - addressing gut issues/Candidal overgrowth while using EMPowerPlus and other supplements). She added a little EMpowerPlus back on as a multivitamin simply because she feels better on it - gets sick less often.
Younger dd: formerly(?) Childhood-onset schizoaffective, TS, OCD, anxiety, PTSD, migraines. After over 15 years, is now "recovered" for almost 5 years after treating endocrine issues, food sensitivities, gut issues, sleep issues, nutritional/mitochondrial needs.
A disclaimer about my salt. My doctors want me having only natural salt - NOT refined, processed salt. They tell me to have Himalayan Salt and Celtic salt. So I just looked those up (I eat Himalayan), and saw Celtic has natural occuring Lithium. Here is something I found on Dr. Mercola's site:
http://www.youtube.com/watch?feature=player_embedded&v=HoE4ugZclk4#!
--Jeanie