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Everything posted by oivay

  1. We did plasmapharesis at CHOP on an outpatient basis. Thankfully my daughter's veins held up. They do it twice weekly, either mon/thurs or tues/friday for three weeks. It was a bit of a drive for us. I think the risk of infection was actually pretty low as they throw away everything afterward. (The nurses showed us how it all worked.) She was diagnosed with Pandas and Sydenham's chorea and had debilitating tics and chorea. There was a noticeable difference after the 2nd treatment and she has been fine since. You'd never know how sick she was by looking at her now. It made a trem
  2. my older daughter (now 12) was diagnosed with Pandas and Sydenham's chorea, after just about every abx and several steroid bursts etc, she had plasmapharesis in March. she has been fine since, still on prophylactic zithromax..........now symptom free. she never had any increased strep titer/etc., and she had at least 8 or 9 blood tests over about 10 months, but almost always positive throat culture, and it was really high and really fast with the rapid strep test.. little one (now 6) would test "scant positive" when older one was sick, little one generally had no symptoms.....also got some
  3. my daughter's problems with pandas were almost all movement based too, several bouts with severe chorea, although cunningham test showed pandas. she had a brain MRI during the most severe bout when she was hospitalized, under general anasthesia (she was moving/shaking/twitching too severely to go into the machine without sedation), and it was negative. it seemed like each episode got worse. she had a total of about 4 episodes over the course of about a year, although the first one was probably the most involved (head/neck/eyes, legs/severe dysphagia) . it was just awful and almost no one
  4. I would absolutely get the tonsils/adenoids checked. I got T/As done on both my kids in November. The ENT said older one's tonsils "were the most disgusting things he'd ever seen" and were oozing pus.......none of this was visible to anyone who examined her preop. she was also diagnosed with pandas, although her symptoms were almost always those of severe chorea. I would say that if you do go for the t/a, you should really check into making sure that they give your child follow up abx and prednisone. mine got a severe exacerbation of motor tics/chorea afterward, which dr. t said was probably f
  5. my daughter had several bouts of debilitating chorea over the past year. we tried abx and steroids bursts, which worked, until they didn't. used zithro, clindamycin & prednisone, then again, which worked again. couldn't use augmentin (allergy) . then biaxin (severe diarrhea) and medrol. no change. then tegretol...minor improvment, but side effects. in the end, the only thing that got rid of the chorea/severe tics was PEX, which so far has made a world of difference. through it all, strep titers never rose, even with raging strep infections (cultures).
  6. We just finished PEX at Chop last week. (outpatient) She had a Pandas dx, as well as a sydenham's chorea dx. We have cigna. It took about a week to get approval, then about 2 more weeks to get appts at pharesis unit. It has made a world of difference, which was almost immediately visible during the second week. My daughter's symptoms were pretty much all severe motor ticks and choreiform movements.
  7. I am wondering who is dong PEX besides Dr. latimer
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