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Daughter Blake 12yr Old (PANDAS diagnosis 8yrs / Fairfax Hospital VA)


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Dave -

Welcome to the forum. You are in a good place here. Read the posts, do some searching, and you will find many answers and you will have many more questions. I am glad that your hopes are high for Blake... I think most folks on this forum feel the same way about their kids.

 

I've only heard good things about Dr. Latimer, and you are fortunate to get an appointment so quickly.

 

I agree that the cunningham test would be a good start. It is good to do the test while your child is in an exacerbation (not after she has had antibiotics, as this can skew the results).

 

Some background info on the test can be found at http://www.pandasresourcenetwork.com/research-programs.html

 

Also, asking about back ground blood work would be good to have going in to see Dr. L.

 

Best wishes as you navigate through here. If you as a question... someone will have the answer!

 

 

Thanks Kim,

 

I have read a little on the Cunningham test and am not convinced yet that it will mean alot to us right now. I agree that finding a definitive test for PANDAS is imperative, but I don't need to be convinced. Blake has PANDAS and I have enough data already on her where another test isn't going to help. If Dr. Latimer will not treat unless she sees results of this test then that's another thing.

 

I am most interested in getting treatment now, not trying to decide whether or not she has PANDAS. She does.

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Hello Dave! Welcome to the forum! I've talked to you on the FaceBook group.

I can't contribute much in the way of advice, as you know I'm not exactly too terribly knowledgeable as far as treatments go, but I do wish you & Blake the best of luck!

One thing I do around here is talk to the kids. Blake isn't that much younger than me, only three years, but I'd still be more than willing to talk to her if you'd like. Personally I know that when I joined the forum I was so happy to hear from other people with P.A.N.D.A.S. Just a thought!

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