thereishope Posted January 21, 2011 Report Posted January 21, 2011 The IVIG study is listed! http://clinicalstudies.info.nih.gov/cgi/wais/bold032001.pl?A_11-M-0058.html@pandas
melanie Posted January 21, 2011 Report Posted January 21, 2011 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).
browneyesmom Posted January 21, 2011 Report Posted January 21, 2011 Thanks Vickie! We *might* qualify... I am pressed for time right now, but emailed for more info.
VickyLH Posted January 21, 2011 Report Posted January 21, 2011 (edited) 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 January 21, 2011 by VickyLH
norcalmom Posted January 21, 2011 Report Posted January 21, 2011 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!
Iowadawn Posted January 21, 2011 Report Posted January 21, 2011 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
thereishope Posted January 21, 2011 Author Report Posted January 21, 2011 (edited) 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 January 21, 2011 by Vickie
airial95 Posted January 21, 2011 Report Posted January 21, 2011 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!!)
P_Mom Posted January 21, 2011 Report Posted January 21, 2011 Cunningham is participating in this study. She and her staff will be running their labs on the children in the study before and after IVIG.
norcalmom Posted January 21, 2011 Report Posted January 21, 2011 After reading the other post...I can picture the selection "negotiations" between Swedo/Cunninghams and Leckman - has anyone been to a jury selection for a high profile case?!
GraceUnderPressure Posted January 21, 2011 Report Posted January 21, 2011 I thought Dr. K was supposed to be doing an ivig study? But his name is not on this one
Joan Pandas Mom Posted January 22, 2011 Report Posted January 22, 2011 Anyone know why a first degree relative with a penicillin allergy would exclude a potential participant? We don't qualify, too old, but just curious.
thereishope Posted January 22, 2011 Author Report Posted January 22, 2011 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.
browneyesmom Posted January 22, 2011 Report Posted January 22, 2011 Yes, a first degree family member with a penicillin allergy does increase the odds of an allergy to penicillin or one in the family of those. I too, would suspect those meds are involved in this study.
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