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I think I'm going to crack my head open and let it spill out on the sidewalk. This is the same neurologist at leading metropolitan hospital who told me a year and a half ago at our last visit: 'I've got 2,000 kids exactly like yours throughout the city.' 'Oh yeah', I said, 'what do they have, what are they diagnosed with?' 'Autism' he said. So today I go back saying all the trials of pharmaceutical prescriptions we tried after seeing you have paradoxical effects: SSRI- ramps up OCD to crippled. Stimulants- ramps up OCD to crippled. Risperadone and your Abilify: manic, pacing, speed talking, poor academics, give me food! Eat! no scary rages, tho. Go through our history (again) although I never say the word Lyme, because that's just crazy talk, right? 'It's PANDAS. You need a PANDAS specialist. It's the immune system.' I went there to see if we could do a trial of lamictal. I didn't get it. He said I needed a child psychologist for that-meanwhile I've got buckets of risperadone, which I've come to absolutely loathe. We have an appt. with LLMD next week after long break. Going to retest Lyme, and ask for an OAT test, beg for Biaxin since that was our last miracle. Appt. in 2 weeks with our specialized Ped. who will probably let us try lamictal. My take away? I am trying to stay in TODAY. Just today. Do what we can as it comes, to try and make it better. And truly, I thank every single person who has gotten the word out on PANDAS/ PANS. Although these Dr.s have no idea what to really do about it (and who has the single answer, really?) At least it is RECOGNIZED. At least we are now saying words like immune system, gut microbes. So, God bless you. And I plan on upping my ACN membership since hey, I really do have a PANS kid ;-)
