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Everything posted by Indigo

  1. Yes, this is how I found the PANDAS in the first place....my dd sounded so much like Alisa that I called my doctor right away to request a blood test. My doctor had recommended the book at her first appt with him so that we could be on the same page. I emailed a huge thank you to Dr. Bock...I am so grateful to him for his work. My daughter is doing incredibly well. EAmom...at this point, I think the PANDAS was diagnosed as Asperger's when she was four...just like Alisa in that book...then as they got older the dx went to bipolar. I even heard "possible schizophrenia" at the point that I got strep in May and my daughter was completely wild. I will never forget the wild look in her eyes that scared me so much.
  2. That is interesting, I haven't heard of that before. Thanks!
  3. Our doctor also told us to put our daughter on oregano supplements and then we'll add in bitter orange if necessary. Not sure if any of you have tried those, but they might be worth a try.
  4. Is this considered a tic or part of PANDAS? I have noticed my dd does this a lot and wondered why.
  5. My daughter has been diagnosed this week with PANDAS. I am wondering for those of you who have been dealing with this how treatment progressed for you and what sort of changes you saw in your child as treatment went on. We started on Clarithromycin and I immediately saw a huge reduction in separation anxiety. Dd seems happier, but also she is feeling more emotional, cries more...but no rages!! I'm thrilled with the progress but am waiting on eggshells for something to fall apart again. We've been on this journey for years before we got a PANDAS dx...she's been dx with Asperger's when she was younger, ADHD, then changed to bipolar this past spring (which incidentally is when I got a strep infection and dd went completely wild)...now I can see that PANDAS has a similar wax-and-wane pattern. Thanks for any help and advice on this subject which is very new to us!!
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