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My PANDAS Story


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I don't know if you saw my questions about this to Buster yesterday on another thread. Personally, I am just trying to sort this out since my son did not have any clear signs of strep at the time of his blood draw for the Cunningham study but he did have elevated Cam Kinase and severe sinusitis....

 

Kimballot - what was the title of that thread? I'm REALLY interested in this topic, but don't have time to read through everything. Thanks!

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fr88 - THANK YOU SO MUCH for posting your comments and answering all the questions. Our strategy is to take all the info we can get our hands on and see what works for our child. I really appreciate all of your information. As a parent of a PANDAS child, it is interesting to hear from someone with PANDAS that is now an adult and doing so well. It gives hope ... ! ;)

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I don't know if you saw my questions about this to Buster yesterday on another thread. Personally, I am just trying to sort this out since my son did not have any clear signs of strep at the time of his blood draw for the Cunningham study but he did have elevated Cam Kinase and severe sinusitis....

 

Kimballot - what was the title of that thread? I'm REALLY interested in this topic, but don't have time to read through everything. Thanks!

 

 

OOPS! Sorry - I usually put the link in! The thread was started by JohnsMom and was called something like "PANDAS - why do we call it this?

 

Here's the link -

http://www.latitudes.org/forums/index.php?showtopic=11662

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Fr88 thanks so much for this info. It is really helpful. We had sudden onset 6 years ago, Chorea type movements and severe OCD within a 24-48 hour period. + culture and elevated titers. PANDAS was suspected but we got off track when we were referred to a psychiatrist. From there it was treated as OCD. As of last October. we are back on the right track. Did you ever have plasmaphoresis after having IVIG? We have had 3 IVIG's and I'm looking into PEX as our last possible treatment. My son is still crippled by this. Thank you for any advice on this.

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fr88 -

 

I don't have any questions for you, I just wanted to thank you for opening up and sharing with us the details of your journey.

 

As the mother of a very young son with PANDAS (3) my biggest fears revolve around what type of childhood and future he has to look forward to. And knowing that you were successful in college and have grown up to be an intellegent articulate person gives us all just as valuable information as the specifics of your path to recovery.

 

Thank you!

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