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  • pandas-cover-cropped.pngYour Child Has Changed; Should You Consider PANDAS?

    Have you seen our PANDAS eBook?  Our book is a helpful primer in a friendly question & answer format.  This eBook contains useful information to understand the symptoms of PANDAS, how it is diagnosed (including lab tests), the different types of treatments, approaches for prevention, and how to find the help and support that you need.  Your satisfaction is guaranteed. Learn more

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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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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 by beeskneesmommy

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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.

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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

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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.

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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.

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