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oivay

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Everything posted by oivay

  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 a
  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
  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'
  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. Th
  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, chor
  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
  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 R
  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
  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
  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.
  16. We did it at Dr. T's suggestion. I think it was in the fall of 2010. It was $400. There really wasn't much doubt at that point that she had, at minimum, Pandas. Her levels clearly showed Pandas. I think the one positive thing about it was that her regular doctor (family doctor also) finally acknowledged that she wasn't actually crazy. I gave her a copy of the results with the accompanying literature they sent, and it was like an instant turnaround. She has watched her like a hawk ever since.
  17. My daughter's levels never rose, even when she actually had strep, and she would get strep fairly often, which was documented by rapid strep tests and/or cultures. She had blood tests for ASO, dnase, etc. at least once a month during her exacerbations and afterward. The way it was explained to me at the time was that this would suggest she had a selective immunodeficiency toward strep, as in the midst of a fully documented strep infection, you would assume titer levels would rise, but hers did not.
  18. I think a steroid burst before taking the test can result in a muted cam kinase number. I think my daughter's number was around 155, it was a while ago though, so I'm not sure.....she had taken a massive steroid burst about a month before the test, which lasted about a month. Her ultimate diagnoses were Pandas and Sydenham's chorea, but her symptoms were almost always more chorea like than Pandas. I think you also have to look at the dopamine receptor antigens? information also.
  19. We had very good luck with PEX. I don't know how much insurance actually paid, but the bill was over $60K, about $11k per treatment for 6 treatments, done on an outpatient basis at CHOP. For us, it was the only thing that worked, after trying just about everything else. She has been pretty much symptom free ever since. Her trigger was almost always strep. (very long history of documented strep infections, often in both kids.)
  20. I don't know if this will help anyone here, but I thought maybe someone would find it useful. They have discovered a new tick-borne disease in NJ. http://newyork.cbslocal.com/2013/01/25/n-j-woman-becomes-first-in-u-s-diagnosed-with-new-deer-tick-disease/
  21. Antibiotics and prednisone worked well for us the first 2 or 3 times, the 4th time it helped, but didn't have anywhere near the effect as the first few times. The way it was explained to me was that antibiotics and steroids work really well for Pandas, until they don't. Which is exactly what happened with us. At that point, we did PEX, which was tremendously helpful.
  22. We used clindamycin twice, combined with a prednisone burst. It worked very well, noticeable improvement within 36 hours, and all symptoms gone within about 3 days. No side effects or worsening.
  23. There are some hotels in that area, and I think there might be one of those short stay type/Marriott Courtyard type places nearby. A pool might be a long shot though. Some nearby towns are Paramus/Allendale/Ramapo, and it's right near the NY/NJ border. You'd probably want to find something on or near Route 17 in either NY (upstate) or NJ. Traffic can be very heavy over there every day except Sunday as it's a major shopping area.
  24. Sorry it took me so long to respond. We saw improvement by the 2nd treatment. (we did it outpatient, 2x week for 3 weeks.) Now it looks like she has the flu.....104 fever....but so far, no ticking.
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