eacampbell67 Posted April 23, 2018 Report Share Posted April 23, 2018 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 Link to comment Share on other sites More sharing options...
beeskneesmommy Posted April 23, 2018 Report Share Posted April 23, 2018 (edited) Has Dr L not done bloodwork? It would be logical that Strep is present with SC. Long term abx would be important. Augmentin. We did a combo of Augmentin and Azith. Is Dr L prescribing abx? Curious as to why your kiddo is not currently taking something. I'm not on these boards much. My son has been in recovery for a long time. However, he had SC, quite severely. We saw Dr. L and others. You're welcome to contact me. Hang in there! Edited April 23, 2018 by beeskneesmommy Link to comment Share on other sites More sharing options...
eacampbell67 Posted April 24, 2018 Author Report Share Posted April 24, 2018 We had some bloodwork done in Feb. After IVIG stratgey was to focus on Lyme - she know believes SC is dominate infection so we are now on the road to fix that. You're right she needs to be and going to start some this week. Thanks I'll contact you. Link to comment Share on other sites More sharing options...
Emine Posted September 17, 2018 Report Share Posted September 17, 2018 Hello, My 23 year old daughter was diagnosed by Dr. L with Sydenham chorea and autoimmune encephalitis. She had Ritux twice, last dose was 8/14. I have seen baby steps forward in her but nothing big yet. Curious to know what others have seen...its been over a month now since the last dose. Would love to know what others have seen at this point. Emine Link to comment Share on other sites More sharing options...
eacampbell67 Posted September 17, 2018 Author Report Share Posted September 17, 2018 my daughter's last ritux 8/2 so this week we are 7 weeks post 2nd part of 1st infusion. we seen some small improvements - my daughter has some major cognitive problems ( forgot how to read) & hearing sensitivity. her memory has improved and seems a little more there- we where told by other parents that you have to waiting until week 8 until we start seeing results. we had her blood work done last week to see where her b cell levels are. Link to comment Share on other sites More sharing options...
Emine Posted September 17, 2018 Report Share Posted September 17, 2018 Thank you for your post! Interesting because I was told by Dr. L that Ritux starts working 30 days after the first dose, so in our case, about 17 days ago. My daughter has MAJOR cognitive problems. I do see small positive changes in her memory but she is not at the point where she can read. I would love to talk live and compare notes, if you are able to. Link to comment Share on other sites More sharing options...
eacampbell67 Posted September 18, 2018 Author Report Share Posted September 18, 2018 You're welcome. . Sure I'll inbox you with my info so we can chat, would be great to compare notes Link to comment Share on other sites More sharing options...
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