We went to the neurologist today to follow up on Nora's last EEG. He said it looked normal. Hmm. I asked if it's normal for HER or just normal. He said normal. But this is only a slice of time that we are seeing and it may not be normal all the time. So it could look not normal at another time. But she looks good. So hooray for that.
And we keep her on her current medication-lamictal until next May when we see him again and start weaning. I was hoping to get off all meds but he said that kids with IS who are on meds, seizure free, for 2 years have only a 30% chance of recurrence but kids who go off earlier have a 70% chance of recurrence. My view was that she seemed to do so well once off zonegran that she'd do even better med free. nope.
Then I brought up the fact that she is missing part of her corpus collasum and whether or not that is causing her delays rather than the seizures. Of course no one can tell us for sure. There was SOMETHING that made her brain not form right when she was developing. We don't know what THAT is. THAT is what made her have cysts, THAT is what made her brain not grow an important piece, and THAT is what made her have seizures. PROBABLY. Once again, it is a big question mark.
SO my next concern is what we can do now. Apparently we are doing everything known to man (or at least the neuro) at this time. But I want more. I want to see more progress. I want her to be so far beyond where she is. Don't get me wrong, I am so thankful she is doing so well and progressing but it is just not fast enough. What about when she turns 3 and we have to switch to the public school district? What if they don't give her everything she needs? I won't be able to watch through a window like I can now to make sure they know what she needs or is trying to say. If she isn't fixed by the time she's 3 how will I know if she will ever be? So once again I will stress and agonize for the next 5 months worrying about what school she'll be in when her birthday rolls around. awesome.
Lori
And we keep her on her current medication-lamictal until next May when we see him again and start weaning. I was hoping to get off all meds but he said that kids with IS who are on meds, seizure free, for 2 years have only a 30% chance of recurrence but kids who go off earlier have a 70% chance of recurrence. My view was that she seemed to do so well once off zonegran that she'd do even better med free. nope.
Then I brought up the fact that she is missing part of her corpus collasum and whether or not that is causing her delays rather than the seizures. Of course no one can tell us for sure. There was SOMETHING that made her brain not form right when she was developing. We don't know what THAT is. THAT is what made her have cysts, THAT is what made her brain not grow an important piece, and THAT is what made her have seizures. PROBABLY. Once again, it is a big question mark.
SO my next concern is what we can do now. Apparently we are doing everything known to man (or at least the neuro) at this time. But I want more. I want to see more progress. I want her to be so far beyond where she is. Don't get me wrong, I am so thankful she is doing so well and progressing but it is just not fast enough. What about when she turns 3 and we have to switch to the public school district? What if they don't give her everything she needs? I won't be able to watch through a window like I can now to make sure they know what she needs or is trying to say. If she isn't fixed by the time she's 3 how will I know if she will ever be? So once again I will stress and agonize for the next 5 months worrying about what school she'll be in when her birthday rolls around. awesome.
Lori
