Strange response to ADHD med

[tu4four]

It's been a while since I have been on here. I thought we might be seeing a little light, and I had ignored my other children and homeschooling due to constant research and putting out fires all day long, so I had to take a break. But here we still are.

 

We have a long story, I apologize--i know a lot of you have read it. i tried to write what he bottom l e was, but that's the real million dollar quesstion, isn't it? if we knew what he bottom line was, maybe we'd have a better ahot at fixing it.

 

My dd12 started with symptoms at 4. She had lots of strep, and we have a PANDAS diagnosis as well as Lyme, Bart, babesia. Micoplasma, hhv6, etc, etc. did 4 years of psych meds. Last feb we started seeing a pANDAS immuno and in April an llmd who uses ART.

 

She has one copy of he c677 gene mutation. Also a mildly high TPO (anti thyroid) level. Low cd57. Low levels of zinc. No tics or motor issues. yeast history. Marked onset of OCD if around strep, but her predominant issue is constant raging and aggression. Pulled her out of school in Feb because she stopped functioning at school. Most all of the PANDAS criteria however including loss of math skills, handwriting changes, bedwetting, frequent urination, clothing sensitivity, separation anxiety, etc, etc.

 

We have used cefdinir, Zithromax. Mepron, bicillin injections, samento, curcumin, vitamin d. Methyl folate, methylb12, zinc, b6, diflucan. Nystatin, grapefruit seed extract, para-a. Wormwood mixture, alinia, artemisinin, a-Bart, a-bab, Milk thistle, rentone, rifampin, flagyl (briefly) and I am sure that I am missing a ton. And we've used a lot of them at the same time to address the different forms of lyme and coinfections.

 

In November, she was still really rough--she has been this way through most of the past 8 years. We had weaned her off of all psych meds last January due to horrible reactions. The only improvement we saw was that she could sleep a little better in June.

In nov, our llmd said that through ART, he was not finding Lyme, Bart, babesia, parasites....anything significant. We saw another immuno who rec IVIG, but her bloodwork would not convince insurance to pay for it. We had to stArt her back on a low dose of abilify which helped.

 

Saw a mainstream neuro in October and had an MRI (arachnoid cyst noted as well a some type of minor sinus disease and a small pineal cyst which dr did not ink contributed to her sudden onset of feeling extremely hot all of the time) and a lumbar puncture. It was like pulling teeth to get any info back from them, but he little that I did get back was supposedly normal. EXCEPT her opening pressure was 38 which was very high in their words and needed to be watched. We as a neuro opthamologist who said that he did not see any peripheral vision loss, and things looked normal except be gave her a pretty suubstantial eyeglass rx which she refuses to wear even around the house even though she picked them out.

 

So here's the weird med thing. My pandas daughter was somewhat bearable on her low dose of abilfy, but she couldn't/would 't complete a task to save her life. still incredibly irritablle and could 't get along with our family, wouldn't listen to me---but she wasn't trying to hurt everyone and was 't tearing my house down. My oldest daughter had a rx for an ADHD med that she said gave her headaches. As my PANDAS daughter could not function or complete any task, we decided to try her on it. (It was a very low dose). Miraculously, an hour later, she was fantastic. Not only in terms of attention, but also in terms of nice. Out of the blue said, "I think I can really be nice no, Mom!" (She didn't know that she had taken a thing different than a boatload of supplements like normal).

 

Saw our psych. He did testing, gave us an rx---all was great....for 3 days. Beefed up her supplements, as I had started to slack, again an improvement. Now she's been on her normal supplements plus artemisinin and samento and wormwood for more than 3 days, and we have not returned to fantastic or even bearable. She is downright mean, will not listen to a thing I say, and now she is as big as I am, and I cannot move her.

 

In all her previous aggression, she never tried to hurt me out of th blue (physically), but in he past two or three days, she has punched me as I came in the room and kicked me when I turned my back.

 

I'm sorry this is so long. It is so frustrating that we are all on our own (except for each other). Just told to go home and somehow raise our children and have a marriage like this.

 

Any ideas that this story gives you--I welcome them. Thanks for reading.

[MomWithOCDSon]

The longer you live in, view, breathe, walk this particular PANDAS/PANS path, the more you see how delicate a good balance can be.

 

From your story, the first thing I think of is that maybe increasing her supplementation tipped a balance that the ADHD med had somehow helped her achieve? I mean, many of us have experienced that there can be too much of a good thing, you know? Is it possible that maybe the supplements and herbals, combined with the med, over-supported something like her dopamine and/or serotonin levels, and that has spun her out?

 

What ADHD med contributed to the "miracle," and is she still taking it?

[T_Anna]

I would also try tittering down the supplements.

 

Our integrative doctor said the things like NAC can kick up yeast and that can drive a kid nuts, or a combo creating a folate trap etc.

[tu4four]

Good idea about the supplements. Why did I not think that?

 

She was prescribed vyvanse 70 mg. yes, she is still taking it.

[qannie47]

tu4four: ditto on the supplements, I would remove anything that is known to be a precursor to serotonin or dopamine. What I really want to express though is how sorry I am that things are so tough right now in your home. You sound like a true Warrior...I hope you find a reversal back to positive real soon.

 

Q

[LexMom]

Does she have any stomach issues? My son has seen remarkable improvement after being treated for h. pylori. My daughter was diagnosed with it so our ped treated my son, too. Stomach issues can mess with your immune system and mental function. I'm now wondering if this was not his problem all the time.

[nicklemama]

B12 is known to cause irritability and anger. I would slowly back down on B12 and see how it goes. It has been one of the things that has helped my son. Too much makes him irritable. He is compound heterozygous for 677 and 1298. We were giving him injections. Now we use a cream for dermal absorption. Twice a day dermal is too much for him. We give it once a day. Have you checked her B12 levels? My sons was really high when we stopped the injections.

[rowingmom]

I too was going to suggest removing additional supps and try to get back to the baseline. If you add anything, wait a week or so before adding something else and you will be better able to tease out response to individual supps.

 

Have you tested for c diff / yeast or other bowel microbes? Artemesinin and wormwood can cause parasite/protozoan/yeast die-off. We also had a HUGE flare caused by grapefruitseed extract, and I mean back to square one.

 

The best thing is that through experimentation (of which I am a great proponent) and careful note-keeping you have discovered your wonderful child is still in there.

 

You can find her again. You are a Great Mom! Keep at it.

Edited February 27, 2014 by rowingmom

[sf_mom]

Have you checked her for mold? As you may remember we see the same ART Dr. as well as an LLMD in CA.

 

Our older DS's C4As were checked initially and completely normal at 1,000. We then did Shoemaker panel and MSH was a little low and one other marker was a little high but nothing that screamed like he had a mold issue. He never came up for mold via ART but did for Cholestyramine for a brief period of one month during treatment and there was no visible mold in our home. We had touched every surface when we moved into our home five years ago with new carpets, paint, floor refinishing, tile cleaning and resurfacing, fixed all potential water issues, etc. It took a tree falling on our home this past summer to discover both white and black mold behind the walls. We then tested for mold via the Real Time Labs Urine Mycotoxin test. Our older DS's results were 6.98 for Trichothecene 'Black Mold' with a reference range of .18 to .2 and it was the same black mold found in our home after tree fell.

 

We had ongoing yeast/fungal issues with all our kids, still do. Mold/yeast can definitely cause AD/HD symptoms. I posted a this particular article yesterday on mold/biotoxin's and thought it might be helpful to read.

 

http://www.royalrife.com/mold_toxins.pdf

 

Our older son has never been better since ongoing detox for mold. Initial detox'ing can make symptoms worse.

[rowingmom]

 

Our older son has never been better since ongoing detox for mold. Initial detox'ing can make symptoms worse.

Could you share your protocol please? I'm not sure we are dealing with external mold toxins, but definately internal yeast.

[sf_mom]

Daily Cholestryramine (prescription). From the article Cholestepure is also good but have not tried it. Per LLMD, there are supplements to help raise MSH. We have not used them yet so I don't have any information. I also think IV nutrients are helping with detox issues. For me, yeast diet. DS eats a very healthy but hard for him to maintain such a restrictive diet. Also, nebulizing Glutatione every other day.

 

http://www.pureformulas.com/cholestepure-180-vegetable-capsules-by-pure-encapsulations.html

 

Also interested in herbals like Byron White A-FNG.

 

http://www.wayneanderson.com/pages/formulas/afng.html

Edited February 27, 2014 by sf_mom

[3bmom]

Our Dr made us give up Dairy for anger and rage. He does this before giving abx or anti-virals. I wouldn't of believed this would make such a difference if I didn't observe it myself. Also when he was angry and verbally abusive I would leave immediately. Walk around the block, library etc. He was old enough and I needed him to know it wasn't ok. No use in confronting them because they are in an irrational place.

 

I agree about sups and especially die off. Our worst flare was after diflucan. Would milk thistle help support the liver.

 

I agree for checking for mold. We found it behind the wall, new drywall from the 70's absorbs water and feeds mold. Dr's said it couldn't hurt him but 3 months before PANDAS he failed a hearing test because both tubes in his ears had collapsed with no prior problems. We also had worst rain in 50 years.

 

Hang in there. It is really tough right now. My oldest son reminded me when I couldn't go on anymore that it truly is darkest before the dawn.