Texas Childrens Hospital

[trggirl]

Has anyone been to Texas children's lately. I am wondering if they are recognizing PANS now. I took my daughter about 5 years ago and they told me it was too controversial and would not treat. I'm wondering if they have changed their thinking yet?

[Mayzoo]

I have asked our Texas PANDAS specialist what hospital to use, and so far, he does not know of one that is PANDAS friendly. There could be one, he just does not know of it yet.

[tu4four]

In our experiences within the past 6 months, TX Children's has not changed its stance. Our pediatrician told us she spoke with the top immunologist for TX Children's and was told that TX Children's does not believe in PANDAS. Our most recent neurologist is with TX Children's (as well as the previous one). He does not believe in PANDAS and seems to be one of the more open-minded docs there. He was compassionate, did a lot of testing, but just won't go there.

 

 

Oddly enough, a TX Children's pediatrican was the first one to mention PANDAS to me. Of course, now she knows nothing about it. Sorry. I'm a little cynical when it comes to Texas Children's.

[trggirl]

Thanks for answering. That's just so disheartening. It blows my mind that something is right there in front of their nose and they can't see it.

[MaryAW]

I wonder if you refer to it as autoimmune encephalitis or autoimmune encephalopathy, if they would be willing to treat? I found this in a post from February:

 

"Duke does not really recognize a PANDAS/PANS diagnosis, but if they can find evidence of an autoimmune condition that is causing Encephalopathy, they will treat it."

[tu4four]

I guess it depends on the open-minded mess of the dr. These are the terms that I actually used with our neurologists (I learned from our pediatrician that pANDAS wasn't going to go anywhere.