Guest guest Posted June 7, 2004 Report Share Posted June 7, 2004 Hey Kathy- I just spoke with Maddie's PCP, and she was doing her own research on the B-12 issue. How did you all decide that your son needed the B-12 shots? The doc and I discussed this briefly. Did you all do a Schilling test? Maddie sees her metabolics doc on the 28th, so unless she feels that something needs to be done sooner, I won't know anything further until then. I would like to go in with some other information, if possible. TIA. HOlly Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 7, 2004 Report Share Posted June 7, 2004 Hi, Holly - had a serum B-12 of >2000, which my doc thought meant dysfunction. About a year ago, he had an intramuscular shot of cyanocobalamin (the old B12) with terrible side effects - language regression, aggression, self-injurious behavior. My doc told me that it would go away in 24-48 hours; it was still there a week later. He then put him on high doses of P-5-P (pyridoxal-5-phosphate, the activated form of Vitamin B6) and the symptoms disappeared in 8 hours - he was even better than baseline (he has autism)). The doc figured that he had some blockage in his B12/methylation pathways that cyanocobalamin was obviously not helping, and further impairing. He had responded so positively to all the other methylation cycle supplements that when subcutaneous methylcobalamin (M-B12) became available, and 90% of the kids with autism in Dr. Neubrander's study responded with improvement in symptoms of autism, my new doc (long story) wanted to try it. has done very well on the M-B12. He gets a shot twice a week. So - long story short - there is no lab test to diagnose functional deficiency of B12 in kids with autism. The Schilling test is used for people with pernicious anemia, I think. No one is using IM cyanocobalamin in kids with autism any more, in favor of M-B12, which seems much more effective and better tolerated in kids with autism and methylation cycle abnormalities. I don't know what this would mean for kids who don't have autism. My 3 kids and I are suspected of having a mito disorder as well, but we haven't been worked up yet, except for low Carnitine levels and suspicious histories and clinical presentations. Hope this helps- Kathy B-12/ Kathy/Dawn/All Hey Kathy- I just spoke with Maddie's PCP, and she was doing her own research on the B-12 issue. How did you all decide that your son needed the B-12 shots? The doc and I discussed this briefly. Did you all do a Schilling test? Maddie sees her metabolics doc on the 28th, so unless she feels that something needs to be done sooner, I won't know anything further until then. I would like to go in with some other information, if possible. TIA. HOllyPlease contact mito-owner with any problems or questions. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 7, 2004 Report Share Posted June 7, 2004 Thanks Kathy- I'm printing this to take to the metabolics doc! Holly B-12/ Kathy/Dawn/All Hey Kathy- I just spoke with Maddie's PCP, and she was doing her own research on the B-12 issue. How did you all decide that your son needed the B-12 shots? The doc and I discussed this briefly. Did you all do a Schilling test? Maddie sees her metabolics doc on the 28th, so unless she feels that something needs to be done sooner, I won't know anything further until then. I would like to go in with some other information, if possible. TIA. HOllyPlease contact mito-owner with any problems or questions. Please contact mito-owner with any problems or questions. Quote Link to comment Share on other sites More sharing options...
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