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Update on NIH study participant


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I have twin 17 yr olds, one of whom has had Pandas from a young age. Last spring just before school ended my boys' guidance counselor called me to ask me about Pandas because her own 8 yr old son had all of a sudden woken up with a severe OCD fear of opening his mouth. He had barely eaten or spoken for weeks. He had also tested positive for strep. He was the perfect candidate for the NIH study from what I could tell, so I encouraged her to contact them. She took her son up in June for testing, and they entered him in the study. After the first round of treatment (she didn't know if it was placebo or IVIG) he did not improve at all over the summer. In August they went up for round 2 and learned he had indeed been given the placebo, and this time he was treated with true immunoglobulin. I am so pleased to tell you all that this little boy is now "95% me, 5% pandas" in his own words!

 

The couselor knew our Pandas story, and recently met with my son to tell him about hers. She told my teen that without him she would never have known how to help her child, and it was so fantastic for him to hear this and know his story had touched someone else who wasn't going to suffer for years without knowing what was wrong.

 

My understanding is that this child was the last one to enter the study - they still need five more.

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HT's Mom,

 

Fantastic that your son's experience could help another little boy and even better that he has received treatment that makes him "95% me, 5% Pandas." Love that--could any of us said it better?

 

Another bonus is that his mother is a guidance counsellor at a school. It sounds like she was very understanding with your son, but now that she has lived it I am very hopeful that she will become a force for spreading the word in your school system, so that other kids who come down with this will get the help and understanding they need from their school.

 

Ko's Mom

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