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New eBook: Your Child Has Changed; Should You Consider PANDAS?


Have you seen the ACN Latitudes PANDAS eBookOur helpful book is a 37-page primer in a friendly question & answer format.  This eBook contains useful information to understand the symptoms of PANDAS, how it is diagnosed (including lab tests), the different types of treatments, approaches for prevention, and how to find the help and support that you need. Learn more

 


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Great PANDAS doc here in Dallas


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6 replies to this topic

#1 TexasDad

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Posted 10 February 2011 - 07:27 PM

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, 11 February 2011 - 12:41 AM.

-Mike


#2 EmersonAilidh

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Posted 10 February 2011 - 08:13 PM

THANK YOU SO MUCH FOR POSTING THIS!!! I have been having a not-so-stellar experience with my new neurologist at Children's! I will definitely be making an appointment with him. :)
15 years old living with P.A.N.D.A.S. in DFW Texas. Suspected age of onset ~ 4 (1999). Suspected age chronic ~ 10 (2006). Tick bite in 2006, tested positive for Lyme on August 2010. Dystonia ~ 2007.

#3 jenb3106

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Posted 10 February 2011 - 08:29 PM

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...

#4 graceunderpressure

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Posted 11 February 2011 - 12:23 AM

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, 11 February 2011 - 12:28 AM.


#5 TexasDad

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Posted 11 February 2011 - 12:49 AM

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.
-Mike

#6 britneymag

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Posted 12 February 2011 - 10:39 AM

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.

#7 TexasDad

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Posted 14 February 2011 - 04:18 PM

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.
-Mike




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