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I was just wondering, other than MTHFR, what the most common genetic issues found among PANDAS children have been? Any data or insights appreciated. Thanks!

 

Our story: We suspect ds3 does have PANDAS and are doing the testing, but know from past experience that he has a horrible reaction to extended antibiotic use - last time we did 5-6 rounds for ear infections he was regressing and I thought he would be dx with autism. He recovered, for the most part, once abx were stopped. The worst is Augmentin. Anyway, we've had an organic acids test done that had some mildly funky results but nothing that pointed to one of the very common metabolic disorders. Despite this, however, I strongly suspect there is *something* going on with him genetically/metabolically that really has a drastic effect on his health at times and has let to his mild speech delay and sensory issues.

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I have no idea what genes these are, but it appears to be very common for kids with PANDAS to have:

 

  • Primary immune deficiency (contributes to candida overgrowth due to abx usage).
  • Hypothyroid (possibly subclinical autoimmune hypothyroid).
  • Gaba/glutamate imbalances (kiddos PANDAS immuno says she is one of the handful of patients he has that her levels are a bit high, but appear to be working together as they should).

A few others come to mind, but not sure how common they are (or if they are genetic) ie low vitamin D3, and yeast/neurotransmitter imbalances.

 

LLM and a few others are good with the genetic side of things; I still have soooooo much to learn.

Edited by Mayzoo
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I'm not defending antibiotics, but it's possible that the regression you've seen hasn't been from the antibiotic itself but rather from the toxins released when bacteria die (called a herxheimer response) - or from the die-off of good bacteria in the gut. It's essential to supplement with probiotics whenever using antibiotics. If you didn't, then you may want to leave that open as a possible cause and not rule out all future use of antibiotics.

 

As for your original question, I don't know that the genetic issues we've discussed on this board focus on a "cause" of Pandas as in "this gene (or genes) cause Pandas." There are several genes I've come across as being implicated in OCD but nothing that suggests how to work around those genetic mutations. Mostly. I've personally focused on the genes highlighted by Amy Yasko in her theories of methylation and the impact of mutations on autistic behaviors. Since she only looks at a few dozen genes specifically involved in methylation, we're only looking at a sliver of the pie. But of those few dozen, the ones most directly tied to neurotransmitter balance are COMT, MAO, and VDR Taq. But these are cogs on wheels. They all touch off cascading effects on the other genes around them. So issues with MTHFR, MTR/MTRR, CBS, BHMT...can also impact our kids (as well as kids who don't have Pandas but have other behavioral issues). And I'm sure there are dozens not even on our radar.

 

For my kids, addressing MTHFR, MAO and CBS have yielded the biggest improvements. But it's not the only thing we had to do to get to good health. Ridding the body of chronic infection, managing inflammation, healing the gut and making sure they consumed adequate levels of nutrients like zinc. B6, trace minerals...were also essential steps along the way.

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My son has MTHFR compound heterozygous. Haven't done the 23 and me yet but he doesn't have trouble taking any of the supplements we've tried. I did not see huge improvements after addressing MTHFR with b12 and methyl folate. I would say smaller improvement. Addressing ehrlichia and anaplasma with augmentin, doxy and now biaxin in place of doxy has him at the best place we've seen in 4 yrs.

 

Meant to also say, his basic labs are unremarkable. No thyroid or immune issues. Low ferritin is currently being addressed with an iron supplement and we've seen a noticeable decrease in the fidgety hyperness, can sit still in a chair better and sleeps better. No restless legs.

Edited by nicklemama
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Thanks so much for the responses. One more question: would you recommend running Yasko's test for MTHFR mutations or does the 23andme give you the same information? I've already ordered the 23andme kit, but was wondering over the last day or so if Yasko would compliment this or provide duplicate information. I guess I could also do the test through Lab Corp although I doubt I will be able to get it covered by insurance given our current situation (Kaiser HMO). Thanks very much!

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Doing Yasko would be 90% redundant to 23andMe. When you get your 23andMe results, you can download your data (in a zipped file) to your harddrive. Then you go to www.geneticgenie.com and run your data thru their free app ($10 donation requested - well worth it). You get a report that's identical to the Yasko report - with two exceptions. 23andMe does not test for the specific SUOX and NOS genes that Yasko does. But hardly worth an extra $495(?).

 

As for Lab Corp, you could never afford to test for all that Yasko tests for (a few dozen snps). 23andMe tests 990,000 snps. I find myself refering back to my 23andMe data a few times a month as I come across various issues in my research, even things not associated with Pans or neurotransmitters or methylation. Do the 23andMe first and if you feel it's really essential to kn ow about the few mutations that only Yasko tests, then you could see if you could get those thru Lab Corp

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