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Many of my friends are doctors or work in the medical field. A well meaning friends whose sister is an Infectious Disease doctor asked me to talk to her, I did. This ID doctor recommended I speak to her SIL who heads an adolescent psychatric dept in a large NYC hospital. This doctor refered me to a pediatrician who has treated MANY Pandas patients. I spoke to the pediatrician and emailed all our labs, timeline & summary last night. Today she called me back..... [the short version] "What are all these antibiotics for? I don't see anything on these labs that justify these medecines. I am SPOOKED when I see so much drugs being thrown at a patient, I see this all the time with Lyme. He HAD Coxsackie in the past, same with EBV, etc. most people will test positive for these diseases at 15. He needs a good pediatric psychiatrist, this should be treated psychiatrically in a theraputic setting. There is no test for Pandas. I've never heard of this lab in Oklahoma, but there is not PANDAS test. " I thanked her for her time and being so prompt with looking over the labs and calling me back. The positive? It was free, as a favor to the other two doctors : / So my question: Are we crazy to believe this will all work? At the moment, I'm waiting to get the kit for the Cunningham/Moleculera lab, and then run more blood tests (in addition to Cunnigham). DS15 is still stuck on the couch, not bathing, not going out, BUT....he does eat, socializes, is nice and is talkative (we took down the Luvox which we think created the havoc over the weekend). We are thinking of pursuing another IVIG and possibly PEX, this doctor made it sound as though I was blindly being led by two quaks who are not qualified to treat a headache. I really hope she's wrong. Here is my SPOOKY list: Currently he is on (5/2/13): Azithromycin - 250 mg/day Augmentin - 2000 mg/day Doxycycline - 200 mg /day Valtrex - 2 GM/day Deplin - 15 mg/day NAC - 2400mg/day B12 (Methylcobalamin) 1000 mcg/day Luvox CR - 100 mg/day Ubiquinol - 100 mg/ day Folinic Acid - 4800 mcg/day Advil - 800 mg/day Diflucan - ?mg Culturelle - 1/day Acidophilus+Bifidus- 1/day T.Anna - very tired DS15 PS. I asked the ID doctor about the difference between WesternBlot and Igenex and she said the information regarding Igenex being better, is internet nonsense!
