Brain Freeze....

Hello fans -
Getting a good news -before next concern?!
Just few days ago,we received a great new from a Specialist in ALD after reading Sammy's last MRI on the large screen- It's BETTER than it was expected!!! Just as we celebrated our Happy moment ,I got a phone call that got me worry. Sammy has been part of wonderful class and school .In the past 2 weeks,there has been specialist's and other professionals that observed Sammy's behaviour and try to learn his style and his needs.The concern is-is there seizures? We have been raising questions about seizures ,but Sammy's December EEG had not show anything. Seizures is very common condition in ALD cases.
I know that just before his hospitalization in January -2008 -one time I saw him sitting on the kitchen floor saying 'I had a Brain Freeze' - this happened only ones . At that point he had ,so many neurological problems with swallowing and gait ataxia that this was put aside until after Transplant. I think now is the time to revisit this possibility again. We trust judgment of our Pediatrician and Cell Stem Team and our Neurologist ,so the next word is after our Doctors. Let's hope for the best.
XOXO Sammy and Mom.