My son was diagnosed with epilepsy in late March 2009. We noticed what we thought to be signs of autism as early as 6 months of age. It was a repetitive head movement to the right with what we thought was day dreaming. Now we know those were absence seizures it wasn’t until his myoclonic seizure in late March when he was with my sister that it all came to light. I was so scared driving him straight to the ER after that frightening phone call. That night at the hospital they didn’t stop he just kept having them but the doctors couldn’t do anything until an all the tests were done.

Now after Keppra and another week in May in the hospital and the addition of Trileptal & now Phenobarb without complete control of his seizures what’s next. I am afraid of the side effects of the meds & what damage these seizures might be doing to his beautiful brain.

He is a normal child he has hit all of his milestones like normal children if not earlier. Lately I have noticed that he isn’t using many of his words like he used to. He still understands them when we say them but he doesn’t repeat them anymore. The seizures only seem to come about when he’s sleepy or waking up from sleep or if he gets really upset. They’re usually 1-2 second very slight head drop and sometimes it throws him off balance but most of the time he just keeps doing what he was doing. Occasionally, he will be aware that he had a seizure and whine about it. The ones that scare me are the ones that last for about a minute where he just slows down his breathing and trembles just slightly. He will sleep after one like that but he doesn’t have those often. Thank God.

Is there anyone out there with similar stories? Can he grow out of this? He has had 4 EEG’s, 2 MRI’s and a CT Scan along with countless blood work. His MRI’s always come back normal as well as his blood work but the EEG’s always show extensive partial seizure activity. What can I do?