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wondered if anyone has a kid with Sydenham's chorea (SC) diagnosis?? my dd got her SC diagnosis confirmed by Dr. L last week. So its PANDAS along with subset of SC. We initially focused on the the Lyme before we got the PANDAS diagnosis. Not much effect on her symptoms ( cognitive decline and hearing sensitivity). We did the IVIG and saw real improvement - that was 3 months ago. not much since. We have no abx to deal with strep which is the next step wanted to see if any folks have dealt with SC and what was most useful treatment for them? I'm not sure if we have killed the lyme but we where on zithro for 6 months. Dr L does not think its Lyme said its the strep thanks
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Here is a very recent article on Sydenham's Chorea. From research, I am learning that children can have relaspes from this until the appropriate treatment is given. Most of the references at the end of this article can be found online for additional reading. My son will be going into the hospital next week and having a central tunneled line. He will also be starting plasma exchange treatments soon afterwards. Our insurance did approve the treatment. I did not realize the damage that strep could do until I started reading articles. My son would never test positive for strep when he was young. After he started taking antibiotics this year, he started testing positive for strep on a rapid strep test. He had the titer test back in December that checked for past strep infections and the levels were high. This finally got my doctors attention because I reminded him that my son would never test positive on rapid strep test. So my question to him was "When did my son have these strep infections?" I wish I had known to ask for a strep culture and maybe we would have caught on to this part sooner. Rapid strep test are not very reliable. I really wonder how many strep infections that my son had when he was younger that went untreated. http://www.bioline.org.br/request?pe14052 http://www.unboundmedicine.com/medline/citation/15968928/Treatment_of_Sydenham's_chorea_with_intravenous_immunoglobulin_plasma_exchange_or_prednisone
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I just wanted to share this article. I am not promoting this lab and did not use this lab for testing. I have had a difficult time understanding why my son's symptoms are so different and yet these anti-neuroantibodies have shown up. The first time he had the Cunningham panel ran it could not be read as unlikly or likely. The marker was in the middle. My educated guess is that my son's body had accepted the antibodies as part of his body. The second time my son had this test was when he had a double ear infection. Both ears inner and outer, very painful, and his symptoms of tremors, vocal tics headache, scalp pain and hypersensitivity went through the roof. He could not stand sheets or blankets on him. This second test came back highly likely but this in itself does not mean that he has PANDAS but he has the antibodies in his brain. I have read bits and pieces of research that these antibodies can show up in other illness. I came across an article that pointed this out and there are references at the bottom of the page. Hopefully this will help someone else figure out why their child has these antibodies if they have had the Cunningham Panel done. http://www.wieslab.se/index.php?headId=73&pageId=73&langId=1&diseaseId=94
