kim Posted October 24, 2009 Report Posted October 24, 2009 For anyone interested in this subject, you might want to look at this site which gives some info on pathways that can be involved with folate and B12 metabolism, and genes involved. We have at least 2 posters on this forum that have some experience with MTHFR polymorphisms, so hopefully they will add. Also, one PANDAS child who had some testing which indicated a problem with the CBS mutation mentioned in this article. http://www.med.illinois.edu/hematology/PtHomocysteinemia.htm If you search "folate b12 nitrous oxide" you can get more info. I see they are doing a study on this now. http://clinicaltrials.gov/ct2/show/NCT00901394 Influence of Preoperative Vitamin B12 and Folate Administration on Homocysteine Concentrations After Nitrous Oxide Anesthesia (Mini-VINO) Association of MTHFR 677C>T genotype on tHcy increase
Buster Posted October 25, 2009 Report Posted October 25, 2009 Kim, Way back in March of 2008, we started pursuing this route because our daughter's symptoms became severe after tooth extractions (she had to have two teeth extracted and they did them about 2 weeks apart). At the time we thought she had the rare B12 deficiency. When we tested for B12 deficiency (while doing other blood work) she came back normal. Instead we think that the tooth extraction (i.e., why she was having the Nitrous Oxide) allowed colonized strep to enter her blood stream and trigger the high antibody response. What was amazing to us was that the exacerbations were within 24 hours after extraction. I'd be interested in what tests looked for the CBS mutation. Regards, Buster For anyone interested in this subject, you might want to look at this site which gives some info on pathways that can be involved with folate and B12 metabolism, and genes involved. We have at least 2 posters on this forum that have some experience with MTHFR polymorphisms, so hopefully they will add. Also, one PANDAS child who had some testing which indicated a problem with the CBS mutation mentioned in this article. http://www.med.illinois.edu/hematology/PtHomocysteinemia.htm If you search "folate b12 nitrous oxide" you can get more info. I see they are doing a study on this now. http://clinicaltrials.gov/ct2/show/NCT00901394 Influence of Preoperative Vitamin B12 and Folate Administration on Homocysteine Concentrations After Nitrous Oxide Anesthesia (Mini-VINO) Association of MTHFR 677C>T genotype on tHcy increase
faith Posted October 25, 2009 Report Posted October 25, 2009 Kim, as you recall, we are one with the MTHFR,..............could you give me the cliff notes on what this has to do with what you're discussing here? I feel lazy at the moment.... btw, re tooth extraction, that means when the dentist pulls the tooth before its time, right? now I gotta figure this out, I know my son's tooth was loose for a long time a few years back, without coming out, and I recall at one point, the dentist numbed him and pulled it, it came out so easy, like it was a piece of bread. I was happy when that baby tooth was finally gone, because for some reason it had turned slightly dark when he was a toddler. The new one grew in white. ....So what would I looking for here? I gotta back in the archives of my mind and see if he had any exacerbations shortly after that. he was probably about 6 at the time. p.s. we are not doing the B12 shots anymore, did that for about a year a few years ago. didn't feel it did anything regarding his tics, that was what I was focused on at the time. Faith
mama2alex Posted October 25, 2009 Report Posted October 25, 2009 We had this genetic testing done with Dr. Yasko almost 2 years ago. I don't remember the exact results, but can look them up if someone is interested. I believe he had a MTHFR defect, but not sure. We did the Yasko protocol based on the results and saw some mercury coming out after trying several other chelation methods. But then I asked the doctor if we could pare down the vitamins a little, and the next time nothing was coming out. We weren't able to get the mercury flowing again and it was such a complicated protocol that we stopped. 6 months after that, we reduced his supplements to a minimum (about 8 a day) and one year after that had our first, full-on PANDAS exacerbation. I have wondered if it's all related. Also, my son had a tooth extracted, with nitrous oxide, some time in the last year - I can't remember when, it's all a blur.
dut Posted October 25, 2009 Report Posted October 25, 2009 Hello. Buster - Our d also got an exacerbation after a baby tooth came out, the dentist pulled it but only cos we were there and it was nearly out anyway. We were symptom free at the time. Within 6 hours she had tummy issues... feeling sick, some pain. Within 12 hours or so, we were seeing some PANDAS symptoms flare. It happened real fast. We did a course af zith asap and a few days to a week or so later all was well again.
kim Posted October 26, 2009 Author Report Posted October 26, 2009 Way back in March of 2008, we started pursuing this route because our daughter's symptoms became severe after tooth extractions (she had to have two teeth extracted and they did them about 2 weeks apart). At the time we thought she had the rare B12 deficiency. When we tested for B12 deficiency (while doing other blood work) she came back normal. Instead we think that the tooth extraction (i.e., why she was having the Nitrous Oxide) allowed colonized strep to enter her blood stream and trigger the high antibody response. What was amazing to us was that the exacerbations were within 24 hours after extraction. I'd be interested in what tests looked for the CBS mutation. Buster, The article below was looking at nitrous oxide with a median duration of general anesthesia over 4.5 h. so I don't know how much can be extrapolated here. I'm sure that your daughters exposure was relatively short, but you did have it twice, so I'm thinking that the increase in symptoms happened after the 2nd one, or did you notice it after each time? It also says that "Nitrous oxide irreversibly inactivates the enzyme methionine synthase by oxidizing the cobalt atom in vitamin B12," so I'm not sure if there has to be a true deficiency, although a deficient state sure would seem to add to the problem. The other thing that's interesting is the apparent effect on endothial cells, I'm thinking BBB here, so maybe the problem could be 2 fold (weakened bbb+autoantibodies?) http://journals.lww.com/anesthesiology/Ful..._Plasma.14.aspx The parent who had the CBS testing done was seeing a Dr. Nancy Mullan. She's in Calif. I listed her info under the "helpful physicians" thread. She follows the Yasko protocol as mama2alex brought up. I don't think this family ever traveled to see her in person, I think it was all done over the phone. Faith, For a refresher, just look at the link that I included in the first post. If your son didn't have nitrous ox when his tooth was extracted, this conversation wouldn't really apply unless there was just an exposure from oral bacteria, i guess. I do want to say that having the knowledge of that glitch is not something that i would turn my back on, ESPECIALLY if there is any family history of heart disease, or clottting problems. You may want to have b12 and folate levels checked periodically or use a sublingual supplement or spray in case there is improper absorbtion of B12. My reg dr has tested both things for my oldest son. I don't think anyone will have too much trouble getting that checked by their physicians. I haven't ran into any resistance with vit d, zinc, or b12/folate. Also, since reg drs. see a correlation of movement disorders btwn Wilson's disease and altered copper/zinc metabolism, those are two that you can get easily too. I think every child with recurrent infections should have zinc and B12 levels checked, especially those kids who shun meat. Getting off topic now,lol!
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