Kati - posted on 10/24/2011 ( 6 moms have responded )
Hi, I'm new here :) I hope you don't mind a rather long-winded explanation/question here!
My son was recently diagnosed with epilepsy, based on the fact that he had two, possibly three, seizures in the course of about three weeks and an EEG with a few bilateral sharps and some generally disordered brain waves.
His seizures were simple partials, where his mouth opened and closed and he drooled a lot. One time his lips turned blue. But every time he was conscious, even if he wasn't able to communicate because of the way his mouth and tongue were moving. He was completely unaffected by them afterward and didn't seem tired or upset at all. Once, after the "worst" of his seizures, he immediately asked to go back outside to play. We had also noticed that he was experiencing some more emotional changes -- was very clingy/needy, occasionally uncontrollably angry/upset when he's normally a very easygoing kid, which the neurologist said was related to the seizure activity in his brain.
The neurologist told us that the blue lips didn't indicate a lack of oxygen to his brain, and said that the seizures weren't really harmful unless they lasted several minutes/a half an hour. But he put my son on Trileptal, which he now takes 5 mL twice a day. He said that it would help with the behavioral issues in addition to helping to prevent the seizures.
So far, about two weeks in (man, it seems a lot longer than that), we haven't had any additional seizures, but the behaviors just seem to be getting worse. The medicine makes him SO sleepy, to the point he can't really do much during the day because he needs two naps (he's 4 and only occasionally napped before the medication) and gets really grumpy and angry when he's sleepy.
My question, I guess, is that we seemed to be better off BEFORE we started the medicine, because even though he was grumpy/angry on occasion, he did not have the added problem of being SO SLEEPY, which magnifies the grumpy/angry. I'm just wondering, when seizures are very minor seeming, is there harm in NOT medicating? I certainly would not take him off of medication without talking to his neurologist. I just am wondering if there are people out there who choose not to medicate their kids with epilepsy. At what point is it really medically necessary? What are the risks? Is the idea that the medication is preventing the seizures from getting worse? I'm not trying to undermine his seizures, because they were definitely scary, I'm just wondering if there alternatives to the medication or if there are significant risks to not medicating him.
Thanks a bunch for reading my long post!