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  • pandas-cover-cropped.pngYour Child Has Changed; Should You Consider PANDAS?

    Have you seen our PANDAS eBook?  Our book is a helpful 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.  Your satisfaction is guaranteed. Learn more

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Hello all, I just joined the group. My 7 year old son is being tested for the strep strain today by his pediatrician, but I need to find a doctor who will take a PANDAS patient. He local doctor knows nothing about this illness. I have called 2 already and they are not accepting new patients. Any recommendations? Thanks!

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Hello, if you are located anywhere near Valdosta, GA there is a doctor who does believe in PANDAS if that helps. I was visiting family there and my PANDAS DS got sick and I took him to Dr. Jonathan Parrot (Info below). My DS was his first PANDAS kid and he ran a strep test for me and kept me there an hour asking questions about PANDAS. He has diagnosed and maybe treated a Syndeham Chorea patient before. So while not a Pandas doc, perhaps he would be a resource for you in the area. And he may know other PANDAS friendly docs in the area. BTW I grew up in Jasper FL, where are you in NFL/ GA? PM me if you want!

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A note about Dr. Murphy, she no longer sees patients herself, she is focusing solely on research. However, the team at the Rothman Center in St. Petersburg is very knowledgeable and she is still based there. From our experience, Dr. Megan Toufexis is the best one there still treating patients regularly.

 

It is worth the trip, however Rothman is not considered very aggressive with treatment, they tend to be more conservative than other specialists. However, if you have a local doctor who is open minded to learning about PANDAS, Rothman will be able to confirm a diagnosis and help with direction as well.

 

Last thing about Rothman, they do use psych meds as part of their treatment options, they don't recommend them for all PANDAS patients, but they see them as a tool in the arsenal while trying to get the infection/immune system under control. Some parents are very anti-psych meds for any reason and are put off when they go to Rothman and hear that they are suggesting pscyh meds in addition to other PANDAS treatments. So be aware that it may be something they suggest.

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There's nobody in North Florida. I searched high and low. I have been treated horribly in Tall, FL. Couldn't find anyone in pensacola or jacksonville. Sorry. Apparently I have to fly up to nyc just to see someone for autoimmune encephalitis, it's so rare.

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