My 11 year old daughter has been having absense seizures for almost a year now ( a few years ago, she has 5 grand mal seizures, but those have stopped). She was on clobazam, which didn't stop the seizures and just made her tired, so we are weaning her off and starting carbamazapene (which she used to take a few years ago). New med hasn't started working yet either...
Anyway, to my real question - What can I tell from the EEG test she just had? We don't see the Dr. again for a few weeks and I can't wait that long!!! During the 20 minute EEG test, she had at least 4 seizures. 2 occurred while she was just lying quietly and 1 was induced by heavy breathing, the other by flashing light. While I sat and watched the screen, you could obviously tell when one was happening - the lines went from looking like ^^^^^^^^^^^ to long, almost erratic waves.
Does this mean anything???? Will the Dr. be able to tell the cause of these seizures now and what is the right treatment??
The cause of most seizures are never known in the majority of people with epilepsy... if there was a specific incident that happened (head injury, infection, etc) they might be able to link them..... as far as reading the EEG, those do not tell the cause, just the type of brain waves on the tracings. Many seizures have specific patterns of waves. Other waves are "artifact" (like moving to adjust position, sniffling, etc). The doc will be able to tell what type of waves they are, but more than likely, not why they have happened.
Hi! There are actually many things that you can do for her (speaking from someone who began having seizures when I was 10, I figured maybe I should reply, since that's around your daughter's age). What can you do? Just be supportive, explain to her what is happening so she understands it, that it's a neurological illness called epilepsy, which results in seizures, but that it is never anything to be ashamed of whatsoever. That millions of people have epilepsy, and lots of famous people have even had it. Help her by giving her moral support when she needs it, because there are going to be times when she will feel weird and like a freak and not understand what is happening to her. Explain to her that it is never anything she should feel that she needs to hide from people. Never, ever come off as though you are ashamed of or embarrassed by this illness, either (I know it goes without saying, but you'd be surprised.) I say all of these things because neither one of my parents did any of the above things for me, and I've been a mess because of that ever since. P.S. Give her lots of love, hugs and affection, too!
Last edited by PurpleRose; 02-07-2008 at 07:06 PM.
Very good points.....kids can be so cruel, and your daughter being educated about her illness can be a huge help in helping her get through school....and also letting her friends and even teachers know that epilepsy isn't something they can catch, or makes her any less 'her'.
Thanks so much for the advice. We do try to be supportive and give her lots of love (which is hard sometimes because the medication makes her so grumpy and tired).
We are so proud of her, she handles it so well. She isn't scared or embarrassed and I think we worry about it much more than she does. We try not to be overprotective, but even the fact that she goes out to the park with her friends, and walks home from school scares me. What if she has a seizure and falls or walks out into traffic?? She is at that age where she wants a little freedom and independance. She turns 12 soon and wants to be able to stay home alone and start babysitting and we keep telling her that we can't allow it, at least until she is on the right medication or dosage that will stop the seizures.
I always fear that this is something she won't grow out of and she'll never drive a car or have limitations on what she can do, but I know people with epilepsy can lead normal lives, she just may have to take medication for the rest of her life.
She isn't scared or embarrassed and I think we worry about it much more than she does. We try not to be overprotective, but even the fact that she goes out to the park with her friends, and walks home from school scares me. What if she has a seizure and falls or walks out into traffic?? She . . . wants to be able to stay home alone and start babysitting and we keep telling her that we can't allow it, at least until she is on the right medication or dosage that will stop the seizures.
I always fear that this is something she won't grow out of and she'll never drive a car or have limitations . . . I know people with epilepsy can lead normal lives, she just may have to take medication for the rest of her life.
Hi, there, Canada. Me again. It sounds like your daughter is managing well. (Being grumpy and tired is understandable, especially when she's just had a seizure.) I do also understand your fear for your daughter's safety. That's only natural. Unfortunately, you can't put her in a bubble for the rest of her life. If you were in a position to, one possibility is home-schooling her. That would offer some measure of protection throughout the day--but that's just a thought, not a suggestion. My biggest concern on what you wrote, however, is, "I always fear that this is something she won't grow out of and she'll . . . have limitations . . . ." Some kids do grow out of it. However, the vast majority do not grow out of it. Not trying to scare you even more. This is just reality. And this is the whole point. It's not something to be "feared," especially by the parent(s), because then the poor kid will grow up fearing it also! Fearing something that may never change is a horrible message to send a child. Facing it head-on and providing strength to face it head on, that's what family can do for one another. That's what helps the child grow up well-adjusted to her particular circumstance, which is having epilepsy, whether or NOT it ends up being fully controlled, partiially controlled, or hardly controlled at all, even with all of the best medications available. Help her to see that her life CAN be normal, even having epilepsy, even having seizures, and even if she will therefore have LIMITATIONS. That can be her special life. She needs to see from you that that very real possibility is OKAY, and is still an acceptable way to live in society, and that she can STILL have a meaningful and purposeful and happy life. I hope this makes some sense. All my best to you and your daughter.
Last edited by PurpleRose; 02-09-2008 at 12:37 PM.
Absolutely..... sometimes "normal" may need some minor tweaking in its definition.... but for the most part (until 4 years ago) I was employed, well respected in the facility and company, and doing whatever I wanted (never felt much about skydiving). I have some limitations now, and am on disability, but that's not how it is for most people. Epilepsy doesn't mean 'options over', just 'options changed'.....
Great points everyone!
It's funny you mentioned "keeping her in a bubble" because she uses that term all the time. I certainly don't want my fears to be passed on to her. She already has a very positive attitude about her seizures and doesn't think that it inhibits her, and I can't let her think that I think that way. My main concern for her is always safety. It's hard for any parent to let go, but I do understand that having epilepsy shouldn't stop her from being a kid.
Education is also a good point - I think we have focused too much on learning about types of seizures and medications that we haven't really looked at living and coping with seizures. We were looking at like just give her a pill and make it go away, but we may have to look at differently.
Thanks for your support and encouragement! I will definately change my attitude about this and be as strong and brave as she is!