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Everything posted by oivay

  1. I actually asked one of the doctors in the hospital what he would do if this happened to his own kid. He said "nothing. She got better last time, and she'll get better this time." This was actually as she was practically convulsing. I said "She only got better last time after 3 weeks straight of zithromax." I then asked him how he would explain that this happened every time she had strep. He said "Strep confuses me." and ran away from me.
  2. Oddly, we had good luck with CHOP. That's where we got the plasmapheresis done. Then again, we basically handed them a diagnosis on a silver platter.......years worth of strep tests, cunningham tests, videos of choreic movements (not that you couldn't see it with your own eyes, but it established a history).....
  3. I thank my lucky stars every day that I had the sense and resources to go somewhere othan than those types of doctors. I think that if these were doctor's kids, and didn't live in a largely rural community, and didn't have relatively limited resources (financial/educational/medical), there is no way in ###### they'd be bulldozing them like this.
  4. I was puzzled by the "he'll have a placebo effect because he cares" remark too........ Does this mean that if your doctor doesn't care, you won't get better?
  5. It totally mirrors everything we went through, right down to the conversion disorder diagnosis by the neuro at a well funded relatively local children's hospital. Our only difference was that we had oodles of lab work documenting strep conducted by the pediatrician, who knew that strep caused ticks and was the first one to order zithro. She was a doubting Thomas with respect to Pandas until the Cunningham test results came back, and actually said she'd never seen a kid with so much strep. And we even had preceding documented other test results, reports from the cardiologist, gastroenterol
  6. Oh jeeze........Dr. Conversion disorder is at it again...... http://www.wgrz.com/news/article/153872/37/Doctor-Treating-Four-New-Cases-of-Conversion-Disorder-in-LeRoy Now he's saying he saw a girl with just tics, which he said is not a conversion disorder. And I won't even go into the "hysteria" means uterus, and young girls have a uterus, and blah blah blah.......
  7. My daugther is 12 and has always wanted to be a doctor, although she wants to be an orthopedist. When the whole Pandas thing was going on, I said "Maybe you could become a neurologist instead and find a cure for strep." He response was "Mom....absolutely the last thing I would ever do in my life is be around strep 24 hours a day. I'm going to do a nice easy thing like knee replacements."
  8. We watched it. Dr. Bowtie certainly looks a lot less smug today. My 12 year old (Pandas & Sydenham's) thought this part was hilarious: Dr. Drew asked Dr. T (after Dr. T. said he had found strep and mycoplasma); "Are you currently working with Dr. Mechtler?" Dr. T answered "No." Followed by total silence. Dr. Drew didn't know what to say............ I think Dr. Drew assumed that all of the doctors would be working together in a big kum bay yah kind of way, the way normal people generally do. He probably isn't familiar with the animosity between the pandas vs. conversion disorde
  9. Does anyone else find it interesting that the other "Pandas" doctors have been conspicuously absent throughout this whole ordeal? I realize that Dr. T is the closest one, geographically speaking, so it is logical that he is handling it. And he is the most thorough open minded compassionate doctor I've ever met, so those kids are in good hands. It is odd, though, isn't it, that no one else (doctor wise) has come forward?
  10. "I have to defend my patients by offering sanity," Mechtler said. Is he actually implying that his patients, or the patients he didn't/doesn't treat are insane? If he can actually restore sanity, he really should get some sort of prize...........
  11. "It's difficult to see a young physician get this much exposure........" Imagine how difficult it is to see your child's life completely altered and then have to deal with incompetent neurologists because they're the only game in town.............. Been there, done that.......... I swear, if this had happened to the Dent doctors own kids, there is absolutely no way they would be drinking the conversion disorder kool-aid.
  12. And there's more......... http://www.buffalonews.com/city/communities/batavia-genesee-county/article716955.ece The defense There was a time when the Dent physicians were not so vocal. Mechtler and McVige initially were reluctant to state or defend their diagnosis, worried that public attention would exacerbate symptoms. But after the media frenzy began and some families refused to return for treatment, Mechtler changed his mind. "I have to defend my patients by offering sanity," Mechtler said. He also wanted to defend pediatric neurologist McVige, a relatively young, n
  13. We also had the same experience with Tegretol. She slept all day, put on 10+ pounds, and just looked like death warmed over. I will say though that it reduced some of the movement, although she then fell down the stairs and sprained her wrist. Check this out....yet another link: http://www.13wham.com/news/local/story/LeRoy-tic-like-symptoms-dr-trifiletti-leroy-h-s/fTu_JTc1ZEKg5xy1SnZVVA.cspx?autoplay=1 "The previous doctor who diagnosed the girls with conversion disorder said in the Buffalo News Dr. Trifiletti is a zealot with no evidence backing his claims." I'm assuming this
  14. We also had a pharmacy tech ask my daughter "You look like normal healthy child. Why you need so much zithromax?" At the time, we were filling a prescription for 60 zithro 250s. Daughter answered "I have this problem with strep in my brain." Oi vay............ As far as long term abx use, I was on long term abx as a child for vesicouretal reflux. I had surgery, which helped tremendously, but wasn't completely effective. I had the same surgery again at 26, which again helped until I got pregnant. I was on abx pretty much from the time post-op (at age 7) until college, and then sometimes
  15. We had a brain MRI done, which was negative. They had to do it under general anasthesia because she was practically convulsing at that point. We also had a video brain EEG, which was also negative. It's also my understanding that Pandas kids generally have negative brain MRIs. As far as the abx go, we initally saw improvement in under a week with zithromax, until the next time. When we used clindamycin and a prednisone burst, there was a dramatic improvement within 48 hours. Complete resolution within about a week. That worked pretty well until the next time.
  16. It really sounds like a UTI.(Urinary Tract Infection). I'd worry too if it looked like there was blood in the urine. I'd check back with your doctor. If you don't have any luck, can you take him to an immediate care place? Otherwise, plenty of fluids/cranberry juice, and 1/4 cup of baking soda in a bath to help with irritation. My daughter is also on zithromax, and has tested positive for protein in her urine a few times. Each time we had to repeat it with first morning urine, which was negative in each case.
  17. Yet another link....... http://www.wivb.com/dpp/news/local/nj-doctor-tests-leroy-students-for-pans Despite testing for PANS, Trifiletti said, "I think Dr. McVige and her colleagues at Dent have done an excellent job in attempting to evaluate these patients to the best of their abilities, and their conclusions are reasonable." "in attempting to evaluate these patients to the best of their abilities"...............
  18. In several of the local websites, they state that environmental testing was done via or in conjunction with BOCES. BOCES is the upstate NY equivalent of vo-tech high school programs. When I was in high school, they offered things like cosmetology, auto mechanics, auto body training etc. I don't know how BOCES would be even remotely qualified to handle sophisticated environmental testing. It will be interesting to see where all of this goes.........
  19. With a rapid strep test, he would know in about 5 minutes. Strep culture is about 2 days. Bloodwork takes a few days. I'm assuming he would test them for just about everything. I wonder if he would be able to arrange the Cunningham test for all of those kids.
  20. Goodness gracious.......... scroll down to the second article on the Batavian link........ Look at all of those rusty metal drums labeled "hazardous" either on or right next to school property. It looks like there are dozens of them. Yikes.
  21. We couldn't do augmentin either....also an allergy (throat closed/tongue swelled). Have you tried clindamycin? We also tried Biaxin, but that gave her truly horrendous diarrhea, so we had to stop that within about 3 days. Also, don't forget the probiotics. They seem to help with the GI effects from all the abx.
  22. The written introduction to the second video link says that there are now more than 2 dozen cases of this "mysterious illness". Two dozen????? Does anybody really think that's possible? Even a doctor has to question an outbreak of "conversion disorder".
  23. Beautifully stated thenmama. I agree that Mechtler et al have been selectively interpreting HIPAA. And I fully understand why that girl's mother would want to keep her as far away as possible from the DENT crew. And one of the first things my daughter's neuro ordered when we first saw him was a cardiological eval, which showed mitral valve regurgitation, which cardio said was impossible to determine if it had always been there(because she'd never been eval'd before), or if it was associated with the onset of chorea/tics, but we had to see her each time another episode occurred. Even d
  24. My 12 year old has been watching all the news etc., and she emailed Dr. Drew herself via his website last night. Her symptoms were strikingly similar to those girls on TV, and she also initially rec'd a conversion disorder diagnosis, which we didn't believe for a second. She had an extensive history of strep and also tested positive for mono (EBV), and missed literally most of 5th and 6th grade. She wants to go up there herself, saying "No one should ever have to go through that." She loves Dr. T and is sure he will be able to help those kids. I am actually from upstate NY and was planni
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