oivay

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).....

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.

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?

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, gastroenterologist, scores of bloodwork, etc. It is enough to drive anyone over the edge. And these "experts" bickering with each other constantly.....we also had that. It was amazing to see what some of the doctors would say to us privately that they wouldn't say to the pandas naysayers.

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.......

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."

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 disorder doctors, and it's probably safe to assume he's never been down the pandas route before. I really think it just isn't possible for someone like Dr. T to work with someone like Dr. Conversion Disorder. It's just total cognitive dissonance for someone like Mechtler to even consider something even resembling Pandas. A conversion disorder is just so nice and neat, and doesn't really require much thought or skill. And it's probably an easy $400 for him considering he says he can do 2 or 3 a week and it only takes 2 minutes per dx.

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?

I pray they will accept the offer.

"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...........

"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.

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, new physician to the Dent practice who has spent "countless emotional hours" treating and counseling the Le Roy patients. "It's difficult to see a young physician get this much exposure and criticism -- especially when she's right," he said. "She's really upset that her patients aren't coming back, that they're being railroaded." He added that parent Jim DuPont has been personally invited to come to the Dent offices with his daughter but has refused. Thera Sanchez and her mother have made and canceled three appointments with Dent. I can't imagine why these parents wouldn't want to bring their children in for a complimentary conversion disorder diagnosis. And how in the world are they (Dr. Conversion Disorder et al.) so freely disseminating this information to news sources?

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 is Dr. Conversion Disorder or his minion.

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 afterward. The abx I got were furadantin, Septra, and ultimately Keflex. (There were a few more in between, but these are the ones that worked.) As I had suffered two bouts of acute pyelonephritis, prophylactic abx seemed like a reasonable thing to do, and was/is an accepted practice. I never had any problems with them, and even now (at 45), my doctors have never hesitated to give me multiple refills for abx, which makes the reluctance to prescribe abx for Pandas especially puzzling to me.

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.

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.

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"...............

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.........

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.

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.

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.

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".

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 during one or our trips to the ER, the attending immediately ordered an echo.

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 planning on going up there soon to visit my mom, but honestly, I'm afraid to bring her near that whole situation as it took so long to get her better. I believe they will discover that it is related to a highly virulent strain of strep and possibly myco, and I'm terrified that being exposed to that might start if all over again, and I just don't think I could handle it.

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.