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Hello to all of the incredible parents and caregivers on this forum. I am new here and found this forum through extensive google searches, which always brought me back here and to several of you who have posted extremely helpful information. I cannot than you enough for sharing your stories. My 5.5 YO son has TS, vocal and motor tics for a year. We have followed similar diets (GF/DF/Nut Free) to many of you here and he also has severe tree nut allergies with anaphylaxis, which seems to be a common thread with TS kids (allergies/OCD/ADHD). We've been on a quest for the past year to find the right cocktail of supplements + diet to help jumpstart his gut biome to function more efficiently. We have a Neurologist, a Pediatrician and the most helpful, a Naturopath who has been with us every step of the way. The non-western path is certainly the one for us, and we've recently noticed a few changes with the introduction of PharmaGaba supplements (2 chewable per day) which have significantly reduced the motor and verbal tics. He's only been on this supplement two days and I notice a difference. Wishful thinking? Or a strong connection? There is a Mt Sinai clinical trial looking at GABA's role in TS with Dr. Vilma Gabbay which many believe to be greatly reduced, up to 50% in TS children. We just sent in our 23andme genetic test for our son, which I'm hoping will also lead us down a more focused path. Not as easy to get a kid to spit in a tube as I would have thought, but we collected enough to process. So much new research out there about the role of GABA and Histamines in TS - sometimes overwhelming. In some cases, kids are not producing enough Histamine and in others, and over-production of histamine and it's not going to the "right" places which from what I can gather is why DAO can be helpful. We see a lot of allergies, food allergies, environmental allergies in our son. I'm convinced my son is allergic to carpet backing and any plastic products that off-gas. Looking at chlorine and pools as another possible trigger, as he has swim class weekly (inside) which we're worried is compounding his symptoms. Anyone else see major environmental effects on triggers tics - specifically plastics or chlorine? He had a NutraEval test where his MTBE levels were extremely high, which was why we started to look at the carpeting and carpet backing in his room and in the house. My main reason for posting today is about genetic testing. Has genetic testing helped to guide your treatment decisions for how you supplement and/or approach detox, chelation or natural and herbal healing for your TS kids? If so - which genetic mutations or markers were the most common or important markers in TS and how did this impact your treatment path? We get our results back in a few weeks so plenty of time to mine for more information. I'm so eternally grateful to have found this forum. We are warriors, super sleuths, CSI investigators trying to solve this neurological mystery to make life a bit easier for our children and loved ones. I am sending you all a gigantic hug from cyberspace. Your words and wisdom have helped me get through many rough patches. Thank you! Erin
my2sons posted a topic in Tourette Syndrome and TicsI am confused about the 23andme results for my DS's vs. Their OATS or ONE test results. They were both homozygous for COMT suggesting supplementation with hydroxy B12 but their nutrievaluations indicated their levels for B12 are fine. So does that mean I should not supplement or does it mean they need more than the average person? Also, they were both homozygous for the GAD1 gene, indicating high glutamate and low GABA and to supplement with Taurine, The anime, NAC, Glycine, VitaminB3. But when tested, my youngest DS was very high in Taurine already. So I am not sure if that means I should avoid taurine with him or if his body is dumping it and needs more. Also, should a supplement with all suggested supplements or just try each til I find one that works. So confused. I am in SC and no doc's here that really understand the genetic testing.
VDR not included in 23andme test
LeesysMom posted a topic in PANS / PANDAS (Lyme included)I have just received my daughter's 23andme test and there is nothing showing results on VDR and I see everyone else having some sort of reading on it. There are no VDR listings at all. Isn't there supposed to be? I don't even know what they are indicators of, but I see everyone else talking about them.
My Own 23 and Me Results
lynn posted a topic in PANS / PANDAS (Lyme included)Just got back my results from 23 and me. DH's got stuck in the machine and haven't come out yet. Very interesting--for one thing, I am the one with the homozygous MTHFR mutation (yikes! who would have known? where did I put that methyl folate?) But the main very interesting thing is how apparently my fairly minor pile of mutations and what must be DH's fairly minor mutations came together to form a child who has homozygous problems in almost every ring in that ubiquitous circle-y Methyl system diagram. Sort of makes me think back to that thread a while ago where we discussed how many of the parents of our kids are math-oriented/gifted. OH well. At least now I have a potential reason for why I had all those miscarriages back in the old days.
nitshel posted a topic in PANS / PANDAS (Lyme included)Hi So we know about Yasko's book and the Web site but were wondering if anybody here knows Of a Dr. who is a methylation expert. Many thanks for sharing.
Guest posted a topic in PANS / PANDAS (Lyme included)Who knows how to decipher this stuff, medically speaking? Just wondering if I could see someone local though I've studied it and don't really see much of anything. There were a few sensitive to this medication and 23% risk for gallstones but nothing of much value. Also said risk of obesity which I find hard to believe as my entire family is too thin actually. Bizarre. Not good to hear when you've had anorexia and bulimia. Anyways, still trying to find a local PCP but none accept medicaid. There is one NP, female, who treats lyme and CFS and lupus supposedly but not sure if she'd be able to review it or not. Thanks.