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Everything posted by oivay

  1. Mr. Bow Tie certainly got a lot more time than any of the others. And what happened to Dr. T's chance to rebut? Immediately after watching this, my 12 year old (dx'd with Pandas and Sydenham's) sent an email to Dr. Drew.
  2. Did anyone else find it interesting that the tests mentioned in the article are the same tests for which the Univ. of Rochester received a grant?
  3. In my daughter's case, we used clindamycin and a prednisone burst when she had a second bout of severe ticking/chorea and was unable to walk. She also had the wide "terror stricken" eyes, but this is consistent with Sydenham's. Within 48 hours, there was a noticeable improvement and she started using her walker and she just looked better. By 72 hours, she was almost walking normally without the walker. Within about 5 days, you'd never know she'd been so sick except for the hand/arm tremors. We also used a little valium. Within 7 days, she was boogie boarding in the ocean. The prednisone d
  4. I imagine new patients will be somewhat reluctant to rush into a practice that misdiagnosed so many kids and seems in a rush to misdiagnose the few they missed.
  5. What do you think will happen when they figure out this really wasn't mass hysteria after all?
  6. I hope they are able to arrange for all of them to have the Cunningham test and I really hope they're (Dent doctors) not shoveling those kids full of anti-psychotics.
  7. 1&2. not daily, but 2x/week zithromax, 250 "at least until high school is over" 3.age & weight 12, about 100 pounds 4. about 5 severe debilitating exacerbations over about a year 5. no symptoms since plasmapharesis in March 2011 (couldn't use penicillin or augmentin due to allergy)
  8. http://www.washingtonpost.com/national/12-girls-at-ny-high-school-develop-involuntary-tics-doc-says-its-mass-psychogenic-illness/2012/01/20/gIQA5k5bEQ_story.html “Some of them were friends, some played on the same soccer team and all are in the same high school,” Mechtler said. He said his office would like to examine the two girls they haven’t seen to determine if they, too, suffer from conversion disorder. I wonder if the other 2 were also diagnosed with mass hysteria by someone else...........
  9. It is Dr. T. And thank God for that. Dr. Mechtler is a complete idiot. And his sidekick, that woman, doesn't even look like she herself believes what she's saying. 12....literally twelve girls with conversion hysteria? and conversion hysteria has often occurred in young women throughout history? Yikes.......... If you check their website, it appears that Mechtler's specialty is cancer. And McVige only recently took her boards (9/2011). http://www.dentinstitute.com/directory/people/show/jennifer-mcvige Gupta is also listed on their staff. If any of their (Rochester Dent n
  10. At the time, her neuro told me that he has seen kids with both..... He said about 10% of the Pandas kids he's seen have presented with symptoms of both.......
  11. The thing about all of this that really bothers me is that I simply don't understand why they readily accept a diagnosis of conversion hysteria, but completely dismiss the idea that it could be Pandas or Sydenham's. It makes no sense.......... Why is it possible to so completely favor one diagnosis over another, even in the face of mounting evidence, clinical anecdotes, and evolving research? Is it just because you can make a diagnosis of conversion disorder with impunity and that there's really no way to disprove it?
  12. I agree, but her cam kinase was clearly in the Pandas range, not the Sydenham's range. It sure looked like Sydenham's though........... She had about 2 years worth of documented strep infections.
  13. The doctors in that video didn't really say anything. It was interesting that one said she had been treating a girl for 9 months. In our case, my daughter did initially get better after about 6 weeks with initial treatment with zithro. Then it all started again about 4 months later (severe documented strep in both kids), was remediated with a steroid burst and clindamycin, and then recurred about 4 months after that(post tonsillectomy after stopping abx), when it improved but did not resolve completely with another steroid/clindamycin burst. Then dystonia set in............which only compl
  14. My daughter's symptoms were almost all severe tics and chorea/choreiform movements (shockingly similar to Thera on that video). No OCD. There was also a brief(about a week) period of some stuttering which coincided with sickness and went away with high dose zithro. Urinary problems twice. Virtually no psychological or psychiatric symptoms, but very clingy at night. She presented like Sydenham's, but the Cunningham test said Pandas, ultimately diagnosed with both.
  15. We did the t & a on both kids Nov. 2011. So far neither of them has had strep since, although we did have a whole host of other issues right after the tonsillectomy with my older daughter. Her tonsils looked completely normal too, but when they took them out, they were literally full of pus. The surgeon said they were the most disgusting things he had ever seen.
  16. Another thing to consider is how your child will hold up during travel. There was no way I could have taken my daughter on a plane when she was in the middle of severe chorea, and I didn't think I could drive her 4 or 5 hours either.
  17. It's interesting that one of the girls said that the medicine she was taking made her sleep all day. This also happened to my daughter when we tried tegretol. She said her head and neck were shaking so badly it was affecting her back. Again, these are the symptoms my daughter started with, although hers were so bad she couldn't read. We found a neck brace/cervical collar helped to keep her straight enough to eat. She also had dysphagia so we had to use broth etc.
  18. It is possible to have Pandas and Sydenham's chorea, simultaneously. (My daughter was diagnosed with both simultaneously.) This is a link for Sydenham's http://www.merckmanuals.com/professional/pediatrics/rheumatic_fever/rheumatic_fever.html From what they were describing, it sounds a heck of lot like what my daughter had/has. (She has been symptom free since getting plasmapharesis in March and is still on zithro 2x/week.)
  19. Oh dear..........I didn't realize they were so closely aligned. I'm desperately hoping that saying that 12 17 year-old girls who suddenly develop movement disorders have "conversion hysteria" is going to cause serious questions about their diagnostic skills to arise. What is this? the middle ages? Even my elderly mother (who lives fairly close by and is watching the news stories) and was a psychiatric nurse, questioned how it was possible for 12 people to suddenly develop "conversion hysteria".
  20. I agree with norcal mom. While my daughter is gifted, and I have heard from several others that their children are too, I think that it is very true that the kids who get successfully treated have educated, tenacious, ballsy parents. I have also heard it theorized that the reason gifted children get this more often is because they have so many more active neuronal connections, it just runs through their brains like wildfire. Additionally, I also work with children who often have neurological impairments. I knew instantly that this was a neurological problem.
  21. It's possible that they are all going to the same neurologist because he may be the only one in town. Upstate NY is pretty rural in a lot of places. As far as the conversion disorder, we got that diagnosis too originally (at Morristown hospital). The neuros there told me flat out that they didn't believe Pandas existed.
  22. I also emailed a different reporter at wham. Mass hysteria? Seriously? I guarantee they wouldn't say this if they weren't girls. I also emailed Dr. T. He is on it and is addressing the issue.
  23. My daughter had general anasthesia when she got a brain MRI when her chorea was horrendous. It almost looked like she was having full body convulsions and it was the only way the could get her in the MRI tube. She started with the chorea again as she was coming out of the anasthesia before she was fully conscious, but I don't think the anasthesia had any effect. She also had general for her tonsillectomy, and no side effects, although the chorea started again about 10 days later, but that was unrelated.
  24. I'm not quite sure why we didn't do IvIg. Her regular doctor was totally against IvIg (her exact words were "I don't care how safe they tell you it is, it's a pooled blood product.), and the others (neuros) didn't even suggest it. Maybe it was the cost? It was about $11,000 per treatment for the PEX. Maybe it had something to do with her dual diagnosis? She was dx'd with both Pandas and Sydenham's, and her symptoms were predominantly severe chorea and tics, although the Cunningham test showed Pandas. Thankfully, the PEX worked, and it was pretty obvious by the second treatment that it was
  25. My daughter had 6 plasmapharesis treatments, twice weekly for 3 weeks on an outpatient basis. They had originally said possibly 5 treatments, then after the 5th one, they said six. They explained to me how they calculated how many treatments were necessary, but I wasn't really focused at the time. It has to do with body weight, blood volume etc.... There seemed to be a lot of math involved as the nurses were constantly using calculators and recording data from the plasma machine. By the second treatment, it was a noticeable difference. She has been symptom free since March, and is still o
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