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oivay last won the day on August 27 2014

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  1. For those whose child was "cured" of Pandas and or Sydenham's chorea..... Has anyone's child had any long term visual effects? I ask because my daughter has been to the eye doctor several times in the last month. He directed us to a neurologist, who didn't seem at all concerned and told us to come back in a few months as she is leaving for college next week. This was not the neurologist she used during her Pandas. Her eye doctor is concerned about the possibility of an acoustic neuroma or ocular atrophy based upon the results of a visual field test and some other symptoms. We are going for a brain and orbit MRI on Thursday, with and without contrast. The eye doctor thinks this may be as a result of the Pandas and Sydenham's she had almost 7 years ago, which was ultimately successfully treated with antibiotics, steroids, and ultimately plasmapheresis. She has been pretty much ok since the plasmapharesis in 2011 and has been doing relatively well. If anyone has had any visual effects post Pandas, please let me know.
  2. She wasn't nauseated that I remember. We did have one close call with an asthma attack during one treatment though. She had six treatments altogether, 2 per week for three weeks. She was completely exhausted though, that day and the next day. We were able to avoid the central line.
  3. My daughter had plasmapharesis about 3 years ago. She was diagnosed with Pandas and Sydenham's. If I can be of assistance, just let me know. We did it on an outpatient basis at CHOP. It was the only thing that really worked for us, and she didn't have another bout of chorea afterward. We did have several documented episodes of strep, but her titers would never rise, even during an active infection, but she would test positive on rapid strep tests and/or cultures.
  4. I just wanted to say that Dr. T was enormously helpful to us. He went far above and beyond what would've been expected of him, and without him, I think it's likely my daughter would continue to suffer from the debilitating effects of Pandas and Sydenham's. He was the only one who had any clue at all what was wrong with her, and the only one who was able to successfully treat her. (And we had been to tons of doctors.) It can sometimes take a bit of time for him to get back to you, but he always responded in times of crisis. At one point, he even gave me his personal cell number and offered to come to our house if the medication didn't work and I was unable to transport her. He's worth his weight in gold, and I think whatever he charges these days is well worth it. I'd give him the shirt off my back.
  5. We had very good luck with PEX. There was a noticeable improvement by the 2nd treatment. We did it 6x on an outpatient basis when Dr. Elia was still at CHOP. (2x week for 3 weeks). It was the only thing that finally put an end to her symptoms. (She was diagnosed with both Pandas and Sydenham's chorea.) Dr. T was our main neurologist. I would double check the cost.....our insurance covered it, but the bills we received from CHOP were about $63,000 altogether. It was almost $11k per treatment.
  6. My daughter's symptoms were almost exclusively tics, but they never seemed to be able to decide whether they were "oscillatory tics" or chorea. Ultimately, she was diagnosed with both Pandas and Sydenham's. The Cunningham test showed Pandas. It was a long hard road, and we tried just about everything. (Antibiotics, steroids, valium, Depakote, Tegretol, and tonsillectomies on both kids. ) The Depakote and Tegretol were essentially useless, but a few times there was noticeable and pretty much remarkable improvement with the abx combined with a prednisone burst, which worked, until it didn't. The thing that ultimately worked for us was plasmapharesis.
  7. My daughter had severe motor tics and chorea/choreiform movements. We were unable to use Augmentin as she is severely allergic to it. When she was on a prednisone burst, the improvement was pretty quick, within about 36 hours, but you could see her begin to improve almost immediately. We also used clindamycin, and valium at night. She always responds well to Zithromax too. Ultimately, we did T&As on both kids, and she also got plasmapharesis, which resolved almost all of her issues.
  8. If I remember correctly, it seemed like a massive amount.... She was about 90 pounds at the time. about 60 mg/day for the first week/10 days or so, then 50, then 40, then 20 then 10. Over the course of about 2 months. virtually the entire summer. But, within about two days, including Clindamycin, she was almost entirely back to normal.....could walk again, although she still needed the walker until about the third day or so. Within a week, she could swim in the ocean again by herself, and you'd never have known how bad it was only a week before.
  9. I can't address the Lyme issue, as that was one thing my daughter didn't have. She was on what seemed to be a massive steroid burst during her second episode (for about 6 weeks). She also was on Clindaymycin. There was a dramatic improvement in a little over 48 hours. Her neuro told us we should watch out for "roid rage". Fortunately, that never happened. She did seem to get fairly hyper though.. almost like she was on speed.. At one point she began cleaning everything in the house with Clorox wipes, and actually alphabetized all of our bookcases. This was highly unusual for her. The Dr. said the cleaning was probably because she was terrified of getting sick again. (In our case, it was always strep.)
  10. We did the Cunningham test, back when it was $400. I believe she was on antibiotics at the time. We had to wait over a month to do it as she had been on massive doses of prednisone before that, and prednisone can mute the results. We did it based on Dr. T's suggestion at the time. Her regular doctor drew the blood and sent it off to Oklahoma. It did take quite a while for the results to come back. We did the test in October, and if I remember correctly, we got the results in December. This was a few years ago. The results showed Pandas, and while she did have some Pandas symptoms, chorea was much, much worse. I do think it was worthwhile to do. I gave her regular GP a copy of the results, and the accompanying literature they sent with them, and she did a complete turnaround after that. (She was a bit of a Pandas naysayer before that.) I think it helped in the sense that we had created a paper trail, with all of her test results, abx usage, strep titers, strep results, etc. I believe all of the documentation helped her to ultimately get plasmapharesis, which was tremendously helpful.
  11. We tried Depakote during my daughter's first episode of severe chorea, probably about 4 or 5 days in. When we used it, she was on it for less than a week. At that point, the chorea became basically total body movements, and she was unable to walk unassisted, or stop her head/neck/arm from shaking. She was unable to even read as her head and eyes were moving in different directions. We discontinued it immediately as we were unsure if that was what caused it to get worse. In the end, I believe it had no effect either way, as her next bout of chorea progressed the same way. We also tried Tegretol a few months later. She became quite pale, put on 12 pounds in less than 2 weeks, and fell down the stairs and sprained her wrist. The Tegretol made her so disoriented she was basically nonfunctional. It did seem to reduce some of the movements though, but it was probably because she was so out of it she could barely move. You also need frequent blood tests to check for anemia with Tegretol. We discontinued it, and got PEX about a month later. She was dual diagnosed with both Sydenham's Chorea and Pandas, and we tried basically everything to stop the shaking. Pex was the only thing that really helped.
  12. Both of my kids have had it at one point, and they have long, curly, thick hair. Get a metal nit comb, use Rid, and comb out their hair every night. Vacuum everything, including your car. I would shampoo them, drench them with conditioner (we used Tresemme), and comb them out with a nit comb every night for two weeks. Then rinse in the shower. Look very closely to make sure you are getting the eggs if there are any. I would also wash their sheets every other day. All stuffed animals etc need to be washed. I also ran all the combs/hair accessories through the dishwasher. I only used Rid once as I didn't want them exposed to too many chemicals. It seemed to do the trick when combined with the nightly conditioner treatment and massive amounts of laundry and vacuuming. As long as you're diligent with the conditioner, it should work. Just make sure to keep them away from any kids who might have them. And, just as an aside, even if the school won't tell you, you can always tell if it's going through a school when literally every teacher there has a bun/updo, or pony tail.
  13. We did both kids at once....older one had been diagnosed with Pandas and Sydenham's. Chorea/tics started again about 2 days after stopping abx post surgery. Ultimately, we did PEX, which worked quite well for her. In the long run it helped though. Just make sure you continue abx, before and after surgery. I've also heard some people use prednisone afterward too. And just because the tonsils look normal doesn't mean they look that way when they come out. Hers looked ok, but when they were removed, the surgeon said they were just oozing pus and were the most disgusting things he'd ever seen.
  14. The triggers for my daughter were pretty much as follows, but always included a positive rapid strep test and /or culture. Titers never rose. 1st time....strep. (treated with Zithromax) took several weeks...maybe 6 to resolve. 2nd time....strep, also had received meningitis vaccine about 3 days before major episode of chorea. first treated with Suprax, then clindamycin and massive steroid burst. improvement within 48 hours. faded prednisone over the course of about 5 or 6 weeks. 3rd time post tonsillectomy after stopping abx 10 days after surgery....treated with biaxin (had to stop due to gastro issues, then clindamycin and Medrol.) significant improvement, but never fully resolved. did pex about 2 mos. later. Excellent results from PEX. She was diagnosed with both Pandas and Sydenham's There were a few other bouts in between, but these were the major ones that left her unable to walk etc.
  15. I completely agree with ChrissyD and our experiences at Morristown were horrible. Don't go near the place under any circumstances. PM me if you want to hear about them. We used Dr. T and were thrilled with him. We also used Dr. Elia for PEX.
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