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It feels like lately, my role is to help others learn from my "mistakes" and that my poor kids are little science experiments. First, I overdose my DD with too much methylfolate and watch her turn bipolar on me. Now, I seem to have forgotten my promise to keep an eye on balance and through my laziness, caused a bout of OCD for my DS,

 

For those who don't know or remember, my son has battled Pandas since 2008 and Lyme since 2010 (tho he probably had undiagnosed Lyme before Pandas - it just took us 2 yrs of Pandas treatments - with mixed results - to find it).

 

He had a great school year and really seemed to be recovering from all the years of illness. School work was coming easily (which as a huge improvement), friendships were blossoming, he was hitting his stride. I was starting to think we were done with the horror story. But then in Feb, he started having OCD issues - but with no recent illness, no swollen glands or congestion or any physical signs of illness. No brain fog or muscle pain or any other symptom other than OCD, which was very strange for him he has always suffered from the whole Pandas package while in a flare. Already on zith+rifampin for lyme, we added augmentin. No change either way. Just this "mild" OCD - maybe a 3-4 on a 10 pt scale.

 

For the past two months, I've been wracking my brain. We tested for yeast - negative. We tried a homeopathic detox remedy - no change. We rotated probiotics, stopped many supplements, tweaked others - no change. I even stopped abx, feeling like we might be done with lyme and that they might be contributing to some gut imbalance. Still no change. Then I looked at his 23andMe results - he has three gene mutations that conspire to make him very high in dopamine and serotonin. So I started looking at one of the genes - MAO-A (you've heard of this gene on the drug commercials that say "don't take this medication if you use an MAO inhibitor" - which means an anti-depressant). And I started looking for the opposite of an MAO inhibitor, something that would help him use up dopamine faster, not slower. What I found is that copper plays a role in MAO-A's ability to degrade dopamine.

 

DIng, ding, ding. My son also has a condition called pyroluria - a condition that makes his body excrete zinc and B6 at a higher than normal rate and creates a zinc deficiency not easily detected in regular blood tests.. This is likely a life-long condition for him, as it is for me. So he takes a very high dose of a zinc/B6 supplement called CORE every day. Zinc and Copper are ying/yang metals. If one is high, the other is usually low. For the first 18 months we treated the pyroluria, I was good about supplementing copper in addition to the CORE to keep things balanced. But if my son takes copper with any other meds, he throws up. So as he got busy with after-school activities, which was our copper time slot, we started skipping the copper. It's probably been months since he took any. On a hunch, I re-started copper. After 4 days, he says the OCD is far milder. Not gone yet, but hardly had any compulsions at school and it only bothered him once he got home and wasn't busy. Hoping this is it, that the copper is helping him degrade neurotransmitters faster.

 

So I post as a reminder to everyone using supplements - remember to keep an eye on balance. Happily, the past few months forced me to stop and re-evaluate supplements that at one point served a purpose but now aren't needed any more. I've cut out about half of the daily pills, including antibiotics. (I was the Queen of Supplements for a very long time). Hoping to only use abx at the first sign of an infection, as a kind of triage, but to remain off of them for as long as we can manage. Fingers crossed.

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Well, two more days under our belt and the OCD is still waning. I did add some lemon balm on Wednesday based on another thread - is't supposed to help with gaba, which I figured would help with some quick temper problems. Last night, he tells me he's been feeling like a mistake and hates his life. i ask how long he's been feeling like this and he says "I don't know, a few days." So I'll be stopping the lemon balm to see what happens. And we did skip copper yesterday because we went to the park and then out to dinner after school and missed our window. So no super sleuth medals (or doodles) for me yet - still working things out. But the copper/zinc thing does seem to have merit.

 

Melinda - you'll figure things out as well, I have no doubt! (just do that pee test :P )

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LLM,

 

Thank you. My DS14 also has PANDAS, Lyme and pyroluria. He is doing much much better over the past year with antibiotics, gluten/casein free diet and supplements including zinc and manganese. He revs up the Thorne #6 B6 supplement, so I have not been adding any B's (except what he gets in veggies/juice).

I too have notice increased waxing and waning OCD and he is NOT on any copper.

 

What copper supplement and B6 brand do you use?

 

Any other suggestions?

 

Again, thank you so much for all your help,

 

Sharon

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hmmm - remind me LLM -- your ds, pyloria but have you thought high copper issues? your dd -- you've thought high copper issues, right? do you supp her copper?

my ds has low zinc, high copper -- high copper personality. pyloria test negative, but doc doesn't trust b/c of low zinc. we recently upped his zinc but i think too quickly and saw some symptoms -- generally thought of as high copper symptoms. i can't imagine it's b/c of low copper. reduced zinc and saw evening out. still in the process of evening. i'm not too worried b/c we have normally scheduled ART-like appt this wednesday.

but wondering -- if increasing zinc would result in symptoms, would charcoal be of help? we've never used charcoal before. doc does not usually use charcoal, does suggest trying to move up zinc at slower rate.

 

ds is generally back to normal but seems to have some fluctuations -- like tonight, not too happy about bath, dh helping him but comes to me with basket full of laundry seeming apologetic that he's handing it to me. i call older ds to bring me Wegman's yummy chocolate chip cookies to share in quiet basement. to dh -- pal, i'll spend all night in the quiet basement scrubbing dirty baseball pants eating chocolate chip cookies if you deal with that obnoxious child in the bathtub! :lol:

Edited by smartyjones
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I started supplementing my son with 50 mg of zinc. He has high copper, per testing. I saw no symptoms. A month or so later, we tested the zinc and now its high, so I have backed down to MWF dosing. It never ends, really.

 

Moosiebell- are you giving B12? I thought B6 needed to be balanced with B12 but I could be wrong. I supplement with the P5P form of B6, as well. I used Klaire labs brand and was giving B 12 shots. DS's new doc told me too much B12 could cause aggression. Sure enough, his B12 was very high. I have stopped the shots.

 

I am now using a product recommended by his doc called Neuroimmune stabilizer. It has 5 MTHFR, hydroxycobalomin(a form of B12), methlycobalomin(B12), P5P and vit D in a cream you rub into the skin. I love not having to give DS shots and it reduces the number of pills he takes each day. He's doing fine on it. It was developed by Dr Kendall Stewart and is made by Neuro Biologix. I am also using their Calming Cream with GABA, l-theanine, l-tyrosine, 5htp and magnesium in it. It seems to be working. I give it morning and bedtime.

Edited by nicklemama
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