T_Anna Posted July 30, 2013 Report Share Posted July 30, 2013 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 Link to comment Share on other sites More sharing options...
lfran Posted July 30, 2013 Report Share Posted July 30, 2013 So very sorry. Link to comment Share on other sites More sharing options...
T_Anna Posted July 30, 2013 Author Report Share Posted July 30, 2013 Thanks. Just aggravating. He must be hitting his head in the bathroom when he goes once a week. Hopefully the PEX will help with the marathon BMs : / Link to comment Share on other sites More sharing options...
PowPow Posted July 30, 2013 Report Share Posted July 30, 2013 So glad you are in for pex! Wonderful. Link to comment Share on other sites More sharing options...
T_Anna Posted July 30, 2013 Author Report Share Posted July 30, 2013 They just started it, here's hoping it's successful!! T.Anna Link to comment Share on other sites More sharing options...
MMC Posted July 30, 2013 Report Share Posted July 30, 2013 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. Link to comment Share on other sites More sharing options...
T_Anna Posted July 30, 2013 Author Report Share Posted July 30, 2013 I feel for you. This sucks : ( Link to comment Share on other sites More sharing options...
LaurenK Posted July 31, 2013 Report Share Posted July 31, 2013 MMC, which treatments have you tried to relieve the tics? Link to comment Share on other sites More sharing options...
michelew Posted July 31, 2013 Report Share Posted July 31, 2013 T. Anna...You are so strong and an inspiration to us all. I will be praying for healing for your son. Let's be hopeful the PEX will finally be the answer for some relief for your poor child. Link to comment Share on other sites More sharing options...
Recommended Posts
Create an account or sign in to comment
You need to be a member in order to leave a comment
Create an account
Sign up for a new account in our community. It's easy!
Register a new accountSign in
Already have an account? Sign in here.
Sign In Now