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Treating PANS/PANDAS

Posted by bajjerfan @bajjerfan, Feb 27 6:15pm

Are there any physicians at Mayo that treat adolescent with PANS/PANDAS?

It can be a result of post COVID complications.

PANS (Pediatric Acute-Onset Neuropsychiatric Syndrome) and PANDAS (Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections) are conditions characterized by sudden onset of neuropsychiatric symptoms in children.

The only doctor in the area who can prescribe ivig therapy is retiring and it would be nice to have an alternative if more such therapy is indicated.

Interested in more discussions like this? Go to the Post-COVID Recovery & COVID-19 Support Group.

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spalardy | @spalardy | Apr 11 6:26am
In reply to @bajjerfan "I have been told that you have better luck connecting with a MD if you describe..." + (show)
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I have been told that you have better luck connecting with a MD if you describe the illness as autoimmune encephalopathy rather than PANS/PANDAS.

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Thank you

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jessiehlen | @jessiehlen | Sep 9 8:48am
In reply to @spalardy "No ,I spoke to 3 different staff members and they told me conflicting information with the..." + (show)
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No ,I spoke to 3 different staff members and they told me conflicting information with the bottom line being that "they do not recognize the diagnosis, but will treat symptoms." This makes absolutely no sense and the first person told me I could request an appointment with Pediatric Neurology, final person ended up saying, "you can only get an appointment with general pediatrics." So disappointing that Mayo is so behind all the other centers on this. They're supposed to be the best.

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This is 100% correct. I've been trying to get a PANDAS diagnosis for my daughter for 3 years now from Mayo and they've been dismissing it and telling me its too contravertial. I just finally got her into a pediatric neurologist who specializes in movement disorders this summer and she was diagnosed with a "severe movement stereotomy." When I asked about PANDAS they said its not PANDAS because her movements are complex and PANDAS is simple. But she has the choriform movements of her arms and she has a facial tic + OCD so the excuse was completely invalid. I was told they would come up with a treatment plan and ve in touch. 3 weeks later I hadnt heard anything so I reached out and was told that no one knows how to treat her and I could buy an instructional video from John's Hopkins to try to treat her at home. I did find a PANDAS doctor (2 actually) at Iowa Specialty Clinics and we have an appt there in 2 weeks so hopefully we get answers.

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