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TexasDad

Great PANDAS doc here in Dallas

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As I posted earlier, our 15 yo son is being treated for his first onset of PANDAS by Dr. Zinser out of Children's Medical Center. Just had a follow-up visit today (2 mo post-treatment) and I can't say enough about Dr. Zinser and the neurology clinic at Children's. We are dealing with a disease where the rule is that you fight tooth and nail to get whatever diagnosis and treatment you can and in many cases it's still not enough. We arrived early, were seen early, and spent a HALF HOUR with Dr. Zinser. I know some of the "destination specialists" (as I call them) do spend that kind of time, but that should be expected after the herculean effort the parents and children make to get there. Whether it's really all that unique or not, I couldn't be more pleased. He has a very sound understanding of PANDAS, fully accepts it for what it is, and aggressively treats it. Combined with our pediatrician, this is hands-down the best care our son has ever received for any illness. Dr. Zinser listens, expects parents to be fully involved, welcomes your research, acknowledges where you are right, and provides explanations where you may not be. I was surprised at how thoroughly our son was tested for every other possible illness and disorder, including Lyme, without us even asking. All the test results were reviewed and explained today. I could go on, but I have to go.

 

If anyone is having difficulty getting the right treatment and would like to consider Zinser/Children's, I can help. Just PM me. I mentioned other parents fighting to get treatment out there and he is willing to consider all cases.

 

PS - Our son received Gamunex IVIG, 1.5 g/kg over 2 days (I know some like to know). Doesn't look like any more will be necessary.

Edited by TexasDad

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Ok, you have my attention! I am in Austin and looking for a PANDAS doctor. We are in the middle of a strep infection, DD's ASO titers were at 2000 last week.. Our doctor here is probably not going to prescribe antibiotics beyond normal 10 day course (which we finish this weekend). Just tonight she admitted to an increase in obsessive thoughts...

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Is Zinser very knowledgeable about PANDAS? Do you know how well he has been following the research?

And any chance he does plasmapheresis?

 

[Jen, we have been using Dr. Seshagiri Rao in Plano (outlying suburb just north of Dallas) and he has been both knowledgeable & helpful - we just have the misfortune of being a chronic case with a slow onset rather than an overnight change which has been more difficult to treat, but he has lots of experience with & can definitely help a case such as your dd]

Edited by GraceUnderPressure

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Is Zinser very knowledgeable about PANDAS? Do you know how well he has been following the research?

And any chance he does plasmapheresis?

 

[Jen, we have been using Dr. Seshagiri Rao in Plano (outlying suburb just north of Dallas) and he has been both knowledgeable & helpful - we just have the misfortune of being a chronic case with a slow onset rather than an overnight change which has been more difficult to treat, but he has lots of experience with & can definitely help a case such as your dd]

 

Yes, he referred to the "research" and the "latest research" during our visit today. I didn't ask him to quote titles and authors, but I can tell by his responses to my statements and questions that he knows what he's talking about. Haven't asked about plasmapheresis as it looks like we won't need it. I think IVIg is usually tried first.

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Did you get this covered by insurance? If you did, what diagnosis or reason did they give for it?

 

I have a great neuro for my kids but he doesn't treat very aggressively. I am moving to Houston but would be more than willing to go to Dallas for someone who knows about Pandas.

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Did you get this covered by insurance? If you did, what diagnosis or reason did they give for it?

 

I have a great neuro for my kids but he doesn't treat very aggressively. I am moving to Houston but would be more than willing to go to Dallas for someone who knows about Pandas.

 

As soon as I can find some time (probably tomorrow), I will call the hospital and find out what diagnosis/codes were used. The discharge paperwork we have says PANDAS, but they may have used something different for the insurance billing. We have Aetna, but I know some others with Aetna have had trouble getting PANDAS covered. I don't think any of them are in Texas, though.

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  • Help us learn if blood type has a correlation with PANDAS/PANS   78 members have voted

    1. 1. If you are the biological mother of a child diagnosed with PANDAS or PANS (or you believe the child has PANDAS or PANS), please select your blood type below:


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      • AB -
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