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Everything posted by T_Mom

  1. Thank you--Peggy Sue. I will watch the Q and A session-- I also found the following conference clip to be helpful. You may have already see it. http://media.mindinstitute.org/video/toxco..._toxconf_hi.wmv * Glutamate -- Any info.? Best, T.Mom
  2. Thank you EAMom, Yes, thanks to reading forum posts the switch to Azith. is on my list for the week ahead...Thank you! I agree the Amox. may never have truly cleared things--perhaps only suppressed. Interesting reflection on the Swedo session. I watched the hour long session but not the Q and A yet. Swedo noted the hep C issue, that is the only thing that really concerns me, and I have yet to wrap my mind around that...IVIG should be safer now, right? some 9+ years later...we would hope, I would like to see some stats. In our case it may not be strep (though we are now charting monthly titers to see any rise or fall...) it may be the "PITAND" issue. The symptoms are so "weirdly" similar to each other across these kids...and they CHANGE all the time... OCD over all: with our dd-- at one time (at least) guilt, incessant prayers, movements, fearing food might be poisoned, the whole written language issue, hand writing deterioration, huge pupils, step-stepping around things a certain way, mood lability...and the anorexia issue. We can point to the week these start and finish with each episode. I know I am not noting anything new to anyone reading this...it is just so darn frustrating. My Father encouraged me at one point that WE were the only ones who truly knew the entire situation with our dd -- all that she was encountering -- and knew the situation best to put the pieces together. Sobering. T.Mom
  3. Thank you very much Dedee-- It has truly helped me to be able to read this forum (though with a heavy heart.) Dr. Murphy's insights are hopeful. As we sort our way through the information--it helps to hear what others have found. Best-- T.Mom
  4. Hi EAMom, Are you doing Azith. half dose or "full" strength right now? Thanks--
  5. Greetings-- I am new to posting. Thank you one and all for the support this forum provides. Our daughter (11) has been struggling with what we believe is PANDAS/PITAND for a year. Sudden, severe OCD episodes started 11/07--First was two months of sudden onset anorexia/compulsive exercising (Nov/Dec) 07-08. Next one was very severe regressive OCD (July-Aug.08) holding of odd positions, eyes closed, no speaking, ETC (26 days.) Have seen numerous doctors, spoken with Dr. K, etc. We did a prednisone burst with the summer episode. We also started Amoxicillan (MRI indicated sinusitus), and started LOW level zoloft within a week of each other. 10- days AFTER the prednisone (but while on Amox. and zoloft) she "walked out of it", it was remarkable. But we then had 3 docs with 3 possible explanations-- She has had three bouts of sinus or cold illness this fall, each one coincided with OCD exacerbation (thankfully moderate.) Each time with full strength Amox. (500mg/2xs a day for 10 days) she "cleared"...until the fourth time in December... We continued on half strength Amox. and once we raised it to full strength again she could go to school. This time though, since late December the struggle is continuing. She is "functioning" though OCD is affecting her writing, stepping, thoughts, etc. No positive strep titers on the journey. OK--My burning question: What do we know about PANDAS kids "outgrowing" this? IS THERE ANY LITERATURE on this? Any references to help understand the course this takes after puberty? Thank you again, T.Mom
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