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Hello

 

I'm new to the Forum. My 9 year old son was diagnosed with Pandas the summer of 2013, we have been seeing the only Panda specialist we have here in Houston since then, MY son has been on Azithromycin/Augmentin. He recently had a really bad flare up, we would like to get a 2nd opinion, we are trying to decide between DR. Williams at the MGH clinic, or Dr. Beth Latimer, we would like any input we can get on both these docs, as we would like to know which one would be best for us.

 

Please share any advise you may have,.

 

Thank you

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I'd go to Dr. Murphy at USF, Rothman Center, if she's seeing new patients. Otherwise, Dr. Williams because of the entire MGH clinic. Either place you get a full staff of knowledgeable people. I flew down to Fla with my DD to see Dr. Murphy. My DD has not had a flare since January now. I was soooooo impressed with her.

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We see Dr Williams at MGH and he is wonderful. We also see Dr Walter (immunologist/allergist) and Dr. Pasternack (infectious disease). These 3 dr work together as part of the PANDAS team to make decisions about how to treat patients. All 3 of the dr have been fantastic. We actually started by seeing Dr. Walter because Dr. Williams was not accepting new patients. We went to her with allergy/pulmonary concerns and I knew she was part of the Pandas team and wanted to bring up my concerns about that as well. She referred us to Dr W and Dr P. My dd was put on antibiotics in Feb and within a week things were much better and within a month all her symptoms were gone. We took her off the antibiotics a couple weeks ago and her Pandas symptoms are back. I called Dr. W to get advice and we are going to see him Monday. So I guess that is a long response :) If you can get into the MGH clinic I recommend it.

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I agree that Dr. Williams is reluctant to do high dose IVIG. However, he did mention that my daughter might need low dose IVIG at some point. Dr Walter uses this with her immune deficient patients and my daughter is on the borderline of immune deficiency and Dr Williams said between that and PANDAs she might need IVIG down the road.

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We see Dr Williams at MGH and he is wonderful. We also see Dr Walter (immunologist/allergist) and Dr. Pasternack (infectious disease). These 3 dr work together as part of the PANDAS team to make decisions about how to treat patients. All 3 of the dr have been fantastic. We actually started by seeing Dr. Walter because Dr. Williams was not accepting new patients. We went to her with allergy/pulmonary concerns and I knew she was part of the Pandas team and wanted to bring up my concerns about that as well. She referred us to Dr W and Dr P. My dd was put on antibiotics in Feb and within a week things were much better and within a month all her symptoms were gone. We took her off the antibiotics a couple weeks ago and her Pandas symptoms are back. I called Dr. W to get advice and we are going to see him Monday. So I guess that is a long response :) If you can get into the MGH clinic I recommend it.

If someone were to see them any idea what out of pocket cost would be? We're in Canada so obviously no US coverage.

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I just got an explanation of my visits from my insurance company and I think it said the visit for Dr. Williams was around $350 had it been paid out of pocket. Thankfully with my insurance it was a 20 dollar copay. Dr. Williams does still have a waiting list I believe but doesnt hurt to try.

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Thank you so much for all the advice everyone, after much debate, we have decided to keep our appointment with Dr. Williams in 3 weeks ( we were on the wait list for 2 months). WE are very reluctant to IVIG as well, it will be our very last resort. But we have reset my son's Augmentin, by increasing the dosage, he seems to be responding to it , the symptoms are gradually going away.

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Dr. Williams does prescribe IVIG for some patients. High dose and low dose. He also does monthly treatments when necessary. However, like most high level doctors, he is very conservative. IVIG isn't his go-to because of the risks involved when using pooled blood.

 

If it were me, I'd see Dr. Williams at Mass General before Dr. Latimer because his support system at the hospital and beyond are so much better.

 

Good luck and let us know how it goes.

Edited by mommybee
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