I am feeling so confused along with worrying about this new diagnosis. I am hoping to find some information and advise.
My daughter Alaina is 19 months old and has Down syndrome. She has been completely healthy since birth. This is our first health issue. about 6 weeks ago I noticed that she was blinking alot and it seems like a real hard blink. Well after watching for a bout a week I realized that her eyes were rolling back with the blink. This happening in a split second and her activity not interupted.
The eye rolling started to become more frequent and more noticable. I think the reason some people didn't notice it is because sometimes she would look down when it would happen.
We had a EEG done that was abnormal. We saw a pediatric neurologist who put her on Keppra .5 ml twice a day and told me to call if after a week she was still having the seizures which tomorrow (monday) will be a week and she is still having them. I am sure we will be increasing the dosage. We will go for a MRI on the 30th of Dec and he doesn't want to see her until March.
He really only told us that she was having generalized seizures and that in a lot of cases children will outgrow it but that people with Down syndrome usually have a reoccurance of seizures in adulthood. So that was that.....bring her back in 3 months.
It is eating at me and I feel that I didn't get as much info from him as I should of.
Another thing bothing me is that I have not heard of or read about seizures that just cause the eyes to roll back.
I have heard of doctors that specialize in epilepsy. Would anyone recommend that I find one for her? Also does anyone have any experience with Keppra?
Thanks for listening if you made it this far. To see another doctor is kind of a no brainer. I just don't know if I am expecting more of the doc than I should.
Thanks for any advise you may have.
Mom to Alaina 19 months