I’ve mentioned a few times on the blog about my DS having febrile seizures. He’s had various tests (CT scan and spinal tap) to rule out causes like meningitis. After his last seizure about two weeks ago, we were referred to an Pediatric Nurologist for an EEG to see if there was an underlying undiagnosed seizure disorder.
The EEG went well, all things considered. DH got up with DS at 4 am, and they watched tv, played on the computer, and ate breakfast. DH says he tried to get him to run around or play, but he mostly just sat on the couch. lol… He did pretty well at the Sleep Clinic, although he kept trying to fall asleep in the car on the way over, so DH had to sit in the backseat and keep him awake. DS didn’t like that at ALL. Parent paybacks for all those sleepless nights. Mwhahahhahhahahaa!
They took us into a private room decorated in a jungle theme. There was a TV near the foot of the bed for him to watch. Getting him prepped was a bit time intensive. They put goop in his hair that looked and smelled a bit like toothpaste. Then they attached about 30 electrodes all around his head, and made a “hat” of gauze to keep him from pulling them off. Before they let him sleep they lowered the lights and did a strobe light test. When the flashes were slow Gavin said “Takin’ lots a pictures.” Lol! But as they flashes got faster, he became upset and annoyed. All of us were happy when that test was over because it really was kinda hard on the eyes. Finally he was allowed to go to sleep for about 30 minutes.
Basically he doesn’t have a seizure disorder like epilepsy, but he does have atypical seizures with fever. Meaning that he also doesn’t have typical febrile seizures like most children. The doctor said that he believes that Gavin has a 95% chance of outgrowing them, although we don’t know when, since they are atypical. It could be at 6, like most kids, but they really don’t know since he’s not falling into the normal pattern.
They do know that his seizures are centered in his temporal lobe(s) because of the symptoms (non-responsive) and they haven’t been big enough to cause convulsions. He does have a 3% chance of developing epilepsy, so we are to keep track of his seizures throughout the year(s). If he ever has one that is not accompanied by a fever, we need to bring him back in to be reexamined and an MRI scan because that will mean that his seizure trigger has changed.
On thing I learned is that he isn’t turning blue because of lack of oxygen, but because of a rush of adrenaline right before the seizures. At least now I won’t worry that he’s not breathing. He just breathes really shallow during the seizure.
Doesn’t he look so pitiful with all those wired coming off his head? Poor thing…
This was actually taken after the test was finished, and they were getting ready to take off the leads. He was upset because he had only gotten about 30 minutes of sleep before they woke him up again. He was really good during the entire prep, and didn’t mind the leads or gauze “hat” at all.
Here is the boy right after the test. There was a fun play area inside the building where the sleep clinic was located. As you can see, that 30 minute nap revived him.