Swollen Head Solved?!

[T_Anna]

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

[lfran]

So very sorry.

[T_Anna]

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 : /

[PowPow]

So glad you are in for pex! Wonderful.

[T_Anna]

They just started it, here's hoping it's successful!!

 

T.Anna

[MMC]

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.

[T_Anna]

I feel for you. This sucks : (

[LaurenK]

MMC, which treatments have you tried to relieve the tics?

[michelew]

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.