Hello Everyone,
To answer some questions, my son's EEGs stayed normal for about 3-4 years after the seizures started, at age 3. Then his EEGs "slowed" and he became learning disabled and then retarded. Not until his thirties did his neurologist diagnose him as having LGS, and she based that on his symptoms rather than on his EEG. She speculates that his seizures come from deep in the brainstem, so they might not show up on an EEG. Shortly after the seizures began, he became unsteady on his feet. This increased over the years and now he cannot walk at all. They seizures seemed to affect him in many physical areas right from the beginning. For example, he started drooling. But he could still build with small Legoes and do puzzles until he was in his thirties.
He has tolerated Dilantin and Celontin (an older med) better than any others. And he has tried many meds! He had Dilantin-related gum overgrowth and surgery for that when he was in his twenties. Other than that, he has had few side-effects from these 2 drugs. They lessen the frequency and intensity but don't really control the seizures. Without any meds (we tried that when he was 7), he started going in and out of status petit mal/absence seizures. Very scary.
He is pretty happy most of the time (even before medical marijuana!). He tends to doze. He is not noisy, demanding, or combative. Everyone at his day program seems to like him because he smiles at them. My husband started helping me when he (Caleb, my son) became unable to help himself physically. Now we work together. I know I am very fortunate to have help and to be strong enough physically. So being his caretaker is not that hard. Thank you to everyone who asked about it..
We are in the process of looking into Epidiolex with our neurologist. Thank you, Leonard, for all your good info on Epidiolex. Also, I believe that you surely did make it up to your parents and that you made them feel loved and happy by doing that.
Seizures are such a drag. I wish I could make them vanish from the world! I used to fantasize about that when Caleb was younger. Wouldn't it be wonderful?