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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
What is the significance of a "not likely" cunningham panel. If the initial flare was over a year ago is it possible that the cunningham changes with time? My son met the clinical criteria for Pans/Panda's 1.5 years ago. Recently had the panel done with no definitive result. Any thoughts?
I want to do the Igenex co-infections panel on DS, who tested positive for Lyme a few months ago, but he is on two abx currently (plus some natural antimicrobials and a host of supplements). I don't want to risk taking him off abx because he is doing well on them right now, but if he is taking them, will that mess up the results of the testing? He is on Augmentin and Biaxin which I do not believe are used to treat babesia or bart. What about the other co-infections? I can't find any info on the Igenex website about how abx affect the test results. Help please?
I have not received my Buhner Book on Lyme and coinfections yet through the mail. This question might be answered in there but I really need to know what band might specifically indicate mycoplasma infection from Lyme. I will be seeing the cardiologist tomorrow and want to approach him about running some more test. I am reading more on Lyme and its coinfections. I am wondering if my son's mycoplasma P antibody levels are from a tick bite or from the virus itself. There must be a way to tell the difference. Any help would be appreciated. I think these test can be run through IGNEX or Stoneybrook Labs.