Reply to More evidence for folate malabsorption in Neurodivergent bodies

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Reply to "More evidence for folate malabsorption in Neurodivergent bodies"

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[quote=Anonymous][quote=Anonymous]I stumbled upon this thread and am wondering if someone can point me in a direction.

DS is 30 and was diagnosed as PANDAS at NIH at age 11 but didn't qualify for the study. He had his first of many episodes (strep induced) at age 6 and the last known strep caused outbreak was in his 20s. His debilitating OCD has made him unable to finish school or to work. He did exposure and response prevention therapy for a couple of years with prophylactic antibiotics, which carried him through high school, but in college he fell apart after a couple of strep episodes. He has refused further ERP treatment and any other therapy, which in any case has proven counterproductive as his (distorted) views of the psychologists just become part of his obsessive ruminations.

The FRAT test looks well worth looking into and something he might agree to do. Where could I find a doctor who might agree to do this testing for adult?

Honestly, we have just about given up. I have resigned myself to saving enough money to support him for life and my daughter has resigned herself to having responsibility for him once DH and I are gone.

Thanks for any help.[/quote]
We really like dr. Dan Rossignol and travel to FL to see him. He brought all of the folate receptor deficiency and FRAT test info up before I started seeing anything about it online. We just go in person once a year and then have virtual visits as needed. I had posted about him before and a parent just went off about how he was a con, took their money, etc. We've honestly paid less to see him and get the whole panel of bloodwork done annually there, and he runs it through insurance (the bloodwork portion). He had my daughter do a longer eeg b/c he was convinced my dd was having seizures even though the dr at georgetown didn't think so. We ended up doing the 24 hour eeg at Georgetown b/c it was easier to do it locally, and the Georgetown neuro was shocked to find out she was having seizures that just didn't show up on the one hour eegs. There have been enough little things that Dr. Rossignol has been correct on that we will continue to go see him annually. If you can't find anyone locally, I think it would be worth a visit.[/quote]

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