Thursday, October 11, 2012

Another Message for Boston Children's Hospital

Just got done posting this over at the Boston Children's Hospital Facebook Page.. It is so very important that they start listening and start learning how to treat children with this disorder.
This is my 13 year old son, getting the RIGHT kind of treatment for PANDAS/PANS
Last year at this time, my sons world was ripped away from him when he got a strep throat infection. My perfectly happy, healthy starting lineman for the school football team woke up one morning, deadly afraid if he played football he would die, until that morning football was his life his most favorite thing in the world. But at the mention of football, he was hiding under a blanket crying uncontrollably, along with that came other fears, and two days after that he had a blinking eye tic, the next morning after that his head was turning to the side and a should shrug tic came also. He was also running a fever so into the doctors we went and he tested Positive for strep that day... They treated the strep but it wasn't enough to stop the immune reaction he was having to the strep.
This last year has been a roller coaster ride of doctors and hospitals and improvements in his conditions only for him to be exposed again to make things worse..
Unlike with my daughter who had PANDAS for a few years now, antibiotics alone wasn't getting his life back for him.. Steroids helped a lot but it was only a short term fix. So in July 2012 he had high dose IVIG done at Children's Hospital of Michigan in Detroit.
BCH Please Please Please.. educate yourself, learn about PANDAS/PANS what it can do to a child, and what is the RIGHT kind of treatment that can help and heal a child... Do not let another child suffer from the wrong treatment.

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1 comment:

Anonymous said...

Dear KC,

I meant to write earlier. You posted a striking story on your daughter's first onset of Pandas on the BCH website. You also posted it on your blog. I re-rendered it and included it (with link) in my follow-up article on the Elizabeth Wray situation, which can be found here:!/2012/10/elizabeth-wray-scandal-protested-at.html

I thought it would be helpful to give a flavor of what sudden onset looks like for readers unfamiliar with PANDAS/PANS. And of course your punch line about the exorcist was near irrestible.

Thank you for sharing your story.

Margaret Gordon!/margaret.gordon.75685