Everything posted by KLJ
We are looking for a "responsive" PANDAS doctor on the east coast. We live in the Washington, DC area and our current doctor, Dr. Latimer, is unreachable no matter how many times we call and leave messages with receptionist, voice mail, or on their online patient portal. Our son is having a PANDAS flare up and is suicidal, homicidal, food restriction, etc. and we need to consult about options (change in abx, additional abx, steroid). He is on daily abx, IVIG 11/13, PEX 2/14. Thank you!
Thanks for replying. Powpow, was interested in who is treating your daughters. Dr. L is convinced its pandas and only pandas based on my son's clinical presentation. She poo poo'd the cunningham and re testing his initial labs to check on titers(High)and mycoplasma levels (high) and Iga (low). After reading so many posts and doing my own research I am starting to think pandas is not the whole story. I am not sure where to go to find out what else might be going on (lyme, candida, vitamin deficiencies, other gut issues) his issues are all neuropsychiatric.
My ds11 was diagnosed with PANDAS last december by dr.L. He has had anxiety and learning disabilities since 3. And when we started SSRI (at 5) we saw ADHD. We did IVIG this november when he started hurting himself in school (academics and social situations-a trigger). Since IVIG he is not able to go to school and its very hard for him to leave the house (raging, crying, getting "stuck"). Dr. L recommends PEX (she did not order cunningham test at time of diagnosis, his Lyme is negative, but high mycoplasma). We will be paying out of pocket ($27,000). Does anyone have a similar story where PEX worked (alleviated the most egregious behaviors)?