Daughter recently diag. with Epilepsy

Diseases & Conditions Epilepsy
1
  Hello All,
   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.
Donna
Mom to Alaina 19 months
2

I'm sorry to hear about what is happening to you and your daughter.  I feel a bit indecisive of how to reply.  How long have you been seeing this doctor?  Has it been since she was born?  How have your other experiences with him been? I don't know that I would change yet if you haven't had any other negative problems.  I would insist on more information.  And study and find info yourself to ask him about.  If she has other doctors, do they seem to work together?  (I say this because I'm worried specialists will just ignore the chance that there might be anything wrong in other areas.  That they will see something wrong, and do every test in their speciality until they find a cause in their speciality, even if it isn't the main cause of the problem.)

But the important thing is how you feel.  Regardless of what anyone here says you know you and your daughter best.  What feels right?

Uhura

3
Hi Donna
I am glad you came to healingwell. I am on Keppra. I have had good results with it. Knock on wood haven't had a daytime Grand Mal in over a year. Sometimes I still have nocturnals. But not alot. Give the Keppra some time. It took me a whole 3 months to adjust to that med. It was my first and only. ;)

I am sorry about what is going on with your Dr. The facts may be the facts. But I dont' really like that bedside manner too much. I think a second opinion is in order. You should feel more then comfortable with the Neuro you hire and him be open to your questions. Please keep in touch
Take care. Tracy

 25 years old
Nursing Student

4
Hi Donna,
The keppra made me drowsy, emotional, lightheaded and just off balance for a while. All of those side effects did subside but it took a while. I guess she is on liquid form cause you said ML's. I am on 1000MG daily. He has tried twice to get my doseage up but with school, I haven't been able to tolerate it. If you need anymore help please ask, I am more then happy to help out :) Tracy

 25 years old
Nursing Student

5

Hi Donna,

Welcome to HW.  So sorry you are going through this with your daughter.  I was on Keppra several years ago and didn't do as well as Tracy.  I felt rather depressed on it and it made me sleepy, so I was switched to another drug.  I hope Alaina does well on it.    It can be frustrating and sad when you don't know what to expect with the treatment, but I agree with the others about communication with your daughter's doctor. 

You have to feel comfortable with the way things are being handled.  When you know what to expect, it changes your outlook totally.   Always feel that you can have your questions answered promptly.  If you think of questions after the appointment, call and talk to the doctor's nurse or assistant if it's a direct question, or make another appointment if you need to talk to the doctor. 

Keep in Touch.  HUGS,  Glenda :-)

complex partial seizures since 22
epilepsy surgery, June 2005