qannie47 Posted October 1, 2013 Report Share Posted October 1, 2013 I researched briefly the 23&ME test. I am trying to figure out how this test can lend itself in helping our Pandas ds. Can anybody share what pertinent info it contains that has lead to successful treatment choices? When your data comes back, does it offer explanations to the findings? Link to comment Share on other sites More sharing options...
LNN Posted October 1, 2013 Report Share Posted October 1, 2013 (edited) 23andMe tests for 990,000 "snps" (pronounced "snips") which are mutations of genes. One gene can have many known snps. MTHFR has something like 10 known snps and 2 that are well studied. Every gene turns switches on or off. If you have a mutation, the light switch might get dimmed instead of turned off or the switch might always be stuck on at 150 watts instead of 75 watts. (unlike a deletion, which means no light switch at all and causes more serious illnesses). So 23andMe tests your spit for all these snps for thousands of genes, implicated in thousands of medical conditions, physical traits, etc. Using the company's website reports are mildly interesting and sometimes informative. You can chose to unlock reports about your risks for alzheimers and breast cancer but you can leave them locked if you chose. My problem with these reports is they don't tell you what to do about your mutations. Ok, I have a 40% greater chance of developing heart disease. But what do I do to sway the odds more in my favor? 23andMe only tells you the problem, not possible "solutions" But you can take your raw data from 23andMe and run it thru a free app called geneticgenie.org ($10 donation well worth it). This searches your data, strips out the 30+ snps involved in the methylation cycle (the body's way of turning vitamins/minerals into cell energy and neurotransmitters et al) and gives you a color coded report. Each of your parents gave you one copy of each snp. If you have two normal snps, your report will show this snp in green. If you have one "good" copy and one mutation, it shows in yellow. If you have two mutations, it shows in red. You then take this info and pour over the documents I pinned in the "helpful threads" link at the top of the forum. Once you know your mutations, you can take supplements, or avoid certain supplements/foods, to help the boy take detours around your yellow and red mutations in the methylation cycle. So if you have an MTHFR mutation and can't turn folate (vitamin B9) into methylfolate on your own, you can detour around this step by supplementing directly with methylfolate and avoiding the B9 found in fortified cereals and multi-vitamins. (MTHFR plays a role in serotonin synthesis as well as heart disease and cell energy) if you have different mutations in the methylation cycle, you can take or avoid other supplements to detour around those roadblocks. How does this help with pandas? Well, some of the snps in the genetic genie report play a direct role in neurotransmitter synthesis. If you have a Pandas kid who also has a mutation that prevents them from producing enough serotonin even on a healthy, good day, then helping them work around this road block will certainly help them reduce anxiety on both good days and during pandas flares. If they have a problem breaking down dopamine, the last thing you'd want to do is give mega-doses of Vitamin D3, which is a precursor to dopamine, even tho D3 is important to the immune system. So knowing your child's methylation snps helps you customize supplements so that their bodies have an easier time achieving balance in the neurotransmitters. Then, if/when they do have pandas issues, hopefully things aren't as severe. Where I think it's really helped is for those of us who've gotten the worst behind us but can't seem to get that last 10-20% of recovery. Treating methylation roadblocks seems to have helped some of our kids reach that full potential. It isn't a "cure" for Pandas. It won't prevent future flares. But it's like exercise. It won't prevent you from catching a cold, but if you're in good shape, it'll probably not hit you so hard and you'll probably recover much sooner than if you're a couch potato with poor nutrition. And, it seems to help our kids with mood issues not associated with infection. So 23andMe is only the first step in collecting data. You then need to do other stuff to make that data useful. Edited October 1, 2013 by LLM putting together the piece and lovemylittleguy 2 Link to comment Share on other sites More sharing options...
T_Anna Posted October 2, 2013 Report Share Posted October 2, 2013 I met with a neurologist (md) who specializes in an integrative approach. She explained that it is important to understand why DS is so susceptible to illness and that based on DS's 23andme results she will decide how to start helping his immune system. She wanted a stool sample, but was completely understanding that his OCD probably wouldn't allow that. She treats PANDAS and Autism as well (I blv she also does phone consults). Hopping this helps speed things along. T.Anna DS15 Link to comment Share on other sites More sharing options...
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