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My new Pandas rabbit hole is glutamate. I've read the posts on here about it and some recent research. It makes sense that flares could be glutamate storms and that's why NSAIDs (Advil) as glutamate antagonists, can have such an immediate positive effect. We just ran genetic info through Nutrahacker and over and over it says to avoid MSG (glutamate) and to take NAC (as well as other things). Then I looked up glutamate and some interesting info: https://unblindmymind.org The biochemist Katherine Reid reverses her daughters autism with a glutamate-free diet. In some ways it seems like a very restrictive diet, but in the end if you eliminate processed/manufactured foods you can avoid glutamate (even the "natural and organic" foods can contain glutamate). Add glycophosate into the mix (Roundup-use of which has drastically increased in last decade) and it creates a perfect storm. Some have said that the reason a gluten-free diet may work for Pandas kids is really because it reduces glutamate. There is lots of info on glutamate and neuropsychiatric effects. These are just a couple: https://www.ncbi.nlm.nih.gov/pubmed/24636977 https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4756530/ Can some experts chime in? Has anyone else done Nutrahacker (or other sites) and found info on MSG etc? How many Pandas kids have this? Would it make sense to try NAC? I've heard some people have a very bad reaction to it.
Hoping someone here can help me with vetting this company? Sending DS off this summer for three weeks . . . and then hopefully college in a year . . . and staring down the barrel of how do we handle all these supplements? What teenager/college kid is going to take a dozen pills each day without being reminded? So I thought I'd see if I could find a place that would make a custom "multi-vitamin" for us that would contain only those substances we KNOW work well for DS, without any of the extras found in standard multi-vitamins. Found this company and did a little trial "build" of our custom supplement . . . almost seems too good to be true. Apparently, we can get the appropriate amounts of NAC, D3, quercitin, B6, zinc, etc. in a single capsule with a 90-day supply costing approximately $1.37/day! I KNOW that's cheaper than what we're currently spending, and it would reduce the pill intake 10-fold! The only additional items he will need will be fish oil which, I suppose for obvious reasons, can't be compounded here. http://www.vitaganic.com/;jsessionid=A65FAC55874682151477999C5522791A Thanks!
My son has had a daily persistant headache since January 2011. A headache specialist diagnosed this several years ago. There was a 3 month time period when my son's headache was totally gone and his allodynia was almost gone. My son was on 1000mg of magnesium and high dosages of B vitamins. During this 3 month period (October -December 2012), he was also able to stand and walk for about 10 minutes before his walking tremor would start. At this time, his cardiologist thought the medications for POTS were kicking in and that my son was on his way back to a normal functioning life. However, flu, strep, mycoplasma infections, and ear infections sent him spiraling downhill in 2013. It was not until later that year, that an immunologist ran testing that indicated my son had past strep and mycoplasma infections without showing symptoms or fevers. It's hard to treat infections when child will not spike a fever and the doctor wants to only run rapid strep test. I always request a culture test now and refuse antibiotics until proven positive. The Cunningham test was also ran in August 2013 and October 2013. The first time results indicated unlikly but the symptoms my son was having could not be denied by anyone. Keep in mind my sons symptoms did not happen over night but kept getting worse after infections since December 2010. In October 2013, my son had a double ear infection and his symptoms went through the roof. He was also on an antibiotics for his ear infection. The Cunningham Panel was ran again and showed Highly Likely, My sons D1,Tublin, and Cam Kinese was very high. Another important test that my son had was a neurotransmitter test that showed high glutamate and norephrinphrine levels So what does all this have to do with a Daily Persistant Headache/allodynia and POTS. The antibodies measured on the Cunningham Panel affect the human nervous system. Cam Kinese seems to be a major player because it affects glutamate, NMDAR receptors, and the heart organ. About a month ago, my son was started on Nemenda to see if it would help with his headache and pain levels. Instead of his headache level at an 8, it has dropped down to a 7. So our doctor has called in the higher dosage that was used in a study. Through research I have also learned that Magnesium and NAC help regulate Glutamate and the NMDAR receptors. Here are some articles that have been helpful in figuring some of this out. Maybe these articles can be of help to someone else. BTW the best test for magnesium is the RBC magnesiunm test. It's very accurate and can be order without a doctor's order. Here are the articles. http://news.vanderbilt.edu/2013/10/magnesium-impacts-vitamin-d-status/ http://www.biomedcentral.com/content/pdf/1741-7015-11-187.pdf http://www.nature.com/ejcn/journal/v57/n10/full/1601689a.html http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3318689/ http://pharmrev.aspetjournals.org/content/63/1/35.full http://toxsci.oxfordjournals.org/content/68/1/9.full http://www.psychiatryadvisor.com/magnesium-an-essential-supplement-for-psychiatric-patients/article/362253/ http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3044191/ http://www.jneurosci.org/content/26/17/4690.full http://gotmag.org/how-to-restore-magnesium/ http://gotmag.org/vitamin-d-deficiency-mg-deficiency-period/ http://www.rsds.org/pdfsall/Sinis_Birbaumer_Gustin.pdf
DS is currently taking 500mg a day of NAC for liver support and detox help, as it is a precursor to glutathione. I'm wondering if we should try glutathione (liposomal? suppositories?) instead as he needs detox help. Anyone using either and finding it makes a difference? positive or negative What brand of glutathione is best? thanks!