When Emeric's Epileptologist said he thought the coordination/balance issues could be migraines I thought there was no way. He does seem to be hurting during these "episodes" but usually points to his legs or grabs at them, not his head. But, then last night he was having a lot of difficult walking and started throwing up. I figured he was getting sick because it's been going around. He threw a couple times and started retching for a bit and then fell asleep and that was the end of it. Now I'm wondering if the doctor is right and he may be having migraines. Vomiting is common, especially in children, and he seems fine today.... It is early so I guess maybe it's too soon to tell. I would hate for him to be having migraines but at least if that were what it is it might be more easily treatable than something else.
We also got the official results of Emeric's last EEG and it has changed since the previous one. Good thing is he had no seizures but he has diffuse slowing for his age and disorganized, high voltage discharges. In simple terms, it's abnormal. It's hard to explain but essentially it's just kind of a crappy EEG. When I called to talk to the nurse she just kept saying that the doctor pays more attention to the child than to what the EEG shows and Emeric is doing better than you'd think he should be based on what his EEG shows.
Emeric fits closely with something called Lennox Gaustaut Syndrome. You can read more about it here. He has not been classified as having it simply because his seizures are not as frequent or severe as typically seen in LGS but the doctor said he is treating him the same way he would treat a kid with LGS. He has some of the seizure types seen in LGS, his EEG fits closely with LGS, and he is developmentally delayed.
I don't mean for all of this to sound so negative but it is what it is. I know people would rather read about all the positive stuff and I would rather post about the positive stuff and I hope that when things are going well that I remember to talk about that too but for now this is what's going on.
I emailed a video of his walking to his doctor in Houston in hopes that maybe she'd have some ideas of what is going on. I'd love to hear from her today but you know how doctors are! ;)
Friday, November 6, 2009
Answers never come easily
Posted by Nicole at 6:15 AM
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2 comments:
Poor Emeric! I'm sorry. :( I hope you guys get some answers soon. I remember being in that boat as well. If only we had answers. . .
ugh... yes i'm beginning to know how doctors are!
that must be frustrating about his EEG. i hope they can find some answer for you guys. if it's migraines, will that be easy to treat?
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