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Good Im glad to see this is happining.Doesnt say how much they are using or what blood tests are testing for.We had IV #18 last night and were doing well.We would be excluded (too old).

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Thanks for posting the link Vickie! It looks like we may qualify. I sent them an e-mail with some questions. I am happy and scared at the same time. I was hoping for a dramatic recovery on antibiotics, but so far we haven't seen it, at least nothing significant. We are only on day 5 of Azithromycin (already tried Amoxicillin and Augmentin), so I guess there's still time for improvement, however I'm concerned his dose it too low (150 mg/day). The thought of IVIG scares me, but this may be the path we have to take.

 

Thanks again,

Vicky in NC

Edited by VickyLH
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this is great! I do want to point out that I was in error in my recent post that "no steroid use" meant never having used steroids - its actually 6 months!

 

EXCLUSION CRITERIA:

 

"Current or recent (within the past six months) treatment with systemic corticosteroids."

 

Gosh I hope the publish this before the 3 year follow up is concluded...That would be like, 4-5 years from now.

 

They really need to get that White Paper out...for those of us in limbo with insurance and treatment advice (because this pretty much seals the deal that IVIG is experimental for pandas). We can't wait 4 years, or even 1 year.

 

But I'm so happy its finally started! Good luck to those of you that qualify!

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Good Im glad to see this is happining.Doesnt say how much they are using or what blood tests are testing for.We had IV #18 last night and were doing well.We would be excluded (too old).

 

My guess would be that Cunningham will get in on the action. I bet they will look very closely at markers in the immune system to see if there are correlations. This is super!! Also, the fact that the placebo kids get the option after a short six weeks. Let's pray the study fills quickly so we can get on with things. I really wonder if the white paper is going to get put on hold until after this study is completed. I could see compelling reasons why they would do that. Just a thought. Dawn

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This was the listed Bench to Bedside award. Cunningham is listed....

 

Institute(s)/Institution

 

Antibody Identification and IVIG Treatment of PANDAS

NIMH: S. Swedo

Yale University: J. Leckman

Oklahoma University Health Sciences Center: M. Cunningham

 

 

 

 

My guess would be that Cunningham will get in on the action.

Edited by Vickie
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Let's pray the study fills quickly so we can get on with things.

 

 

Not too quickly - my son would be eligible, but not til he turns 4 in October...so I'm praying that the study is still open then if we need it! (Of course, I'm also praying that we WON'T need it then!!) B)

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I think it's just because the child will have a higher likelyhood of being allergic or developing an allergy. It sounds like the kids will be put on a prophylactic antibiotic post IVIG (says child must be able to tolerate proph antibiotics). That antibiotic may be penicillin or from the penicillin family.

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