New here - introduction

[bigmighty]

Hi. Wanted to introduce myself and thank everyone for the assistance and information. DS (recently turned 13) just finished the NIH clinical trial. After the 2nd set of IVIG infusions, he was 90+% improved. In addition to all of the OCD and anxiety going away, DS’s life-long hypotonia, sensory integration challenges, and sensitivity to corn all disappeared entirely. It was amazing!

 

We were given prophylactic antibiotics by NIH and told that since DS would not get strep while on the medication, all would be well. Unfortunately, DS got strep 3 ½ weeks later (that was in July). Once he got strep, he was significantly worse than before we started with NIH – even after the strep was treated. Presently, DS is in a holding pattern on 1,000 mg keflex daily plus ibuprofen 3x daily – plus probiotics. He is doing about 40% better than when he had active strep, but it is very much tied to the medications. Even taking a pill an hour late results in a noticeable decline.

 

Obviously, there is no way of knowing if the improvements we saw through the NIH clinical trial would have remained. But it is hard not to wonder what might have happened if he had not gotten strep. DS is just starting with a wonderful CBT/ERP therapist. we have an initial meeting with Dr. B. in December to see if one more round of IVIG is a possibility.

 

Anyone interested in specifics about the clinical trial is free to e-mail me directly. Best, Suzanne

[beeskneesmommy]

Our PANDAS kiddos are proned to sensitivity to Strep. Mine got Strep post tonsillectomy while on BID therapeutic dose of Augmentin. His titers finally went down with Cefdinir on board for several months. Prior to his tonsillectomy even Cephalexin was not able to send the Strep away...

Edited November 15, 2011 by Beeskneesmommy

[bigmighty]

Hi. Wanted to introduce myself and thank everyone for the assistance and information. DS (recently turned 13) just finished the NIH clinical trial. After the 2nd set of IVIG infusions, he was 90+% improved. In addition to all of the OCD and anxiety going away, DS’s life-long hypotonia, sensory integration challenges, and sensitivity to corn all disappeared entirely. It was amazing!

 

We were given prophylactic antibiotics by NIH and told that since DS would not get strep while on the medication, all would be well. Unfortunately, DS got strep 3 ½ weeks later (that was in July). Once he got strep, he was significantly worse than before we started with NIH – even after the strep was treated. Presently, DS is in a holding pattern on 1,000 mg keflex daily plus ibuprofen 3x daily – plus probiotics. He is doing about 40% better than when he had active strep, but it is very much tied to the medications. Even taking a pill an hour late results in a noticeable decline.

 

Obviously, there is no way of knowing if the improvements we saw through the NIH clinical trial would have remained. But it is hard not to wonder what might have happened if he had not gotten strep. DS is just starting with a wonderful CBT/ERP therapist. we have an initial meeting with Dr. B. in December to see if one more round of IVIG is a possibility.

 

Anyone interested in specifics about the clinical trial is free to e-mail me directly. Best, Suzanne

[bigmighty]

Forgot to add - the prophylactic antibiotic in DS's case was azithro 500 mg weekly. They wanted DS to take it all at once, but his stomach would not tolerate it. So he took 100 mg daily on week days. In our case, the antibiotic was chosen because, at the time, there was a suspected sensitivity or allergy to amox. After DS got strep again, we did the allergy testing and ruled that out.

 

The reason for the very low dose of antibiotic is that they need to make sure it is at a low enough level not to offer possible curative benefits, that might be confused with benefits from the IVIG.

[MomWithOCDSon]

The reason for the very low dose of antibiotic is that they need to make sure it is at a low enough level not to offer possible curative benefits, that might be confused with benefits from the IVIG.

 

I'm curious about these "possible curative benefits" NIH was concerned could accompany abx and muddy the results of the IVIG trial. Can you elaborate on that at all?

 

Thanks!

[bigmighty]

I was told that we could not remain on antibiotics that might be considered to be at a "curative dose" level and were required to switch to a lower prophylactic dose. No idea what all they specifically viewed the "curative" properties of higher doses of antibiotics to be. Sorry. They did not elaborate.

[thereishope]

I would think for study purposes, if the child has improvement they want it be to clearly the benefit of IVIG and not give anyone the opportunity to say it was not the effect of IVIg but the long term full dose abx. They want no speculation as to what improved the child for study purposes.

Edited November 18, 2011 by Vickie