ptcgirl Posted February 5, 2013 Report Posted February 5, 2013 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.
airial95 Posted February 5, 2013 Report Posted February 5, 2013 Beeskneesmommy - I'm interested in finding out too - if you wouldn't mind PM'ing me as well.
Dedee Posted February 5, 2013 Report Posted February 5, 2013 Me too please....I just referred someone to him.
jtp Posted February 5, 2013 Report Posted February 5, 2013 PM Me too please... I'm going there next week. Thank you
ThinkGutBacteria Posted February 5, 2013 Report Posted February 5, 2013 Please let us know what happened. I was considering seeing him for DD7 PANS. Thanks.
colleendonny Posted February 5, 2013 Report Posted February 5, 2013 I would appreciate a PM as well. My three little ones have been seeing him for the last 13 months. Thank you.
Hopeny Posted February 5, 2013 Report Posted February 5, 2013 Me too please, Dr. B has been amazing for both my kids.
ChrissyD Posted February 5, 2013 Report Posted February 5, 2013 My son is on his waiting list -- please PM me too.
Teri Posted February 5, 2013 Report Posted February 5, 2013 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
landamom Posted February 5, 2013 Report Posted February 5, 2013 I was told yesterday that he is no longer accepting new patients right now. This didn't surprise me as anyone who is already a patient knows what their office is like currently.
beeskneesmommy Posted February 6, 2013 Report Posted February 6, 2013 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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