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Did anyone else get the Pandasnetwork email?


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Hi guys! Yesterday I received an updated list of PANDAS providers from PANDASnetwork. Dr. B wasn't on the list which shocked me since I expected him to be one of the top on there. I emailed them and asked them why he wasn't included. I figured it was a mistake. Here was their response, "lists providers that follow the current NIH/NIMH recommendation for IVIG usage. We reserve the right to omit any provider from the website's public list." Ok.... Clearly it was purposeful. As I'm looking over the list, there are MANY providers that don't follow the current recommendations from NIMH. Then, that last part sounds almost defensive? I don't get it. Not trying to stir anything up, but wondering if there is info that I don't know about Dr. B or something. We've had only a wonderful experience. My child is extremely close (probably close: 90-100%) to being healed from his protocol. I'm confused. Not sure if one of you runs this site, volunteers for them, or knows something.

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I feel very confused! I don't really want to jump on the band wagon but we see Dr. B also for the past 11 months. Due to go back on 3/4 so this really perks my curiosity and sends me into a bit of a panic. Can someone shine some light on this situation??

 

Teri

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Yikes! I have answered several PMs. There is nothing wrong with Dr. B! What I can tell is that we have been at this for quite some time. I do a lot of research and work with a multidisciplinary team. We chose to have our son's 1 and only IVig with another specialist due to our conservative approach, financial constraints, our location, and the fact that our son presents very well when not in flare. No co-morbidity. However, Dr. B was able to bring our son very, very far with abx alone, long term. He did not by any means push IVig, in fact, he was ultra conservative regarding this treatment. We continue to work closely with him and he manages much of our son's meds and immuno issues. I credit him, in part, with saving my son.

 

In addition, we work with a multidisciplinary team for just that reason. Dr. B, as an immunologist, brings that piece to the table. Dr. L, as a pediatric neurologist, brings her piece, and our other docs bring theirs. I don't think that 1 doc out of the big guns is necessarily better than the other, rather, it takes more than 1 discipline to treat each individual child. I credit this, most of all, with our success.

 

The main things is to consider more than 1 opinion and make an educated choice that is right for your individual child.

 

I repeat - Dr. B is a good man, a good doc, and I trust him! Ultimately, the responsibility and decisions for treatment lie upon our shoulders as parents.

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