Unusual Seizure Like Activity

My son just turned one year old. He was macrocephalic and very floppy at birth. His head continued to grow larger and hypotonia became very apparent. He still cannot hold up his head, but he is very alert and continues to make progress with his therapy. He can sit supported, plays patty cake and loves to babble. Over the past several months, he had begun to have these strange episodes every three weeks. My neurologist is not even sure if it is a seizure. He usually awakes from sleep screaming. His left eye begins twitching as well as his body. As the episode escalates he begins to ball up very tight and continues with the twitching and screaming. These last for about 20 minutes. Toward the end he goes silent and his breathing becomes shallow and really short quiet breaths. If any of your children have episodes like this please let us know because no one seems to be able to figure it out. He has been tested for many storage disorders, Canavans, Alexanders, etc, but all come back negative. His MRI is abnormal and shows incresed brightness of the white matter.