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DS has a soft (squishy) spot in the crown of his head. He was admitted this morning for plasmapheresis, and the doctors at the hospital did a CT on his head. It seems he has soft tissue forming in front of his skull due to self harming (chronic injury) and it has started to calcify...ughhh!!!

 

I will send the CT to our neurologist, but according to radiologist if he doesn't stop the injury his head will be permanently reshaped. Brain is fine btw.

 

I hate this disease.

 

T.Anna

DS15

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I am sorry to hear this...hope PEX helps. DS15 has reflux symptoms a lot lately, and yesterday he told me his stomach feels funny. He cannot eat much without feeling abnormal in the gut, even though he is hungry. I am thinking hiatal hernia. He has always had a severely pronounced chest / diaphragm tic (over 4 years now). I am thinking it has caused or aggravated a hernia...sees our family doc tomorrow morning. If he needs surgery, I don't know how he will ever recover b/c of his tic, that is about every 4 seconds. I hate this disorder too...never ending suffering for our kids.

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