Epilepsy - Monterey Park,CA

Updated on December 17, 2012
L.P. asks from Monterey Park, CA
6 answers

My son was diagnosed with GEFS when he was 14 months old. He is now 23 months old, is there any hope for him to have a "normal" life? Or is this going to eat my son alive? He is developementally delayed but he is walking and says about 5 words. I feel like there are no real answers, it's just a sit back and wait game. I would love to talk to someone that understands what I am going through.

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So What Happened?

thanks to all that responded. Because my son is so young and he has not made it through the window of opportunity to learn which they say is 1-3, there is great worry that he will only continue to become more developmentally delayed. When looking for research and stories of similiar cases their children are severely handicaped from the years of seizures. It is so hard to image my boy who seems to be ok other than some small differences to end up like some of these children that are completely handicaped. I just want him to be able to go to main stream school and have opportunities as an adult that every other child has. Epilepsy is so wide ranged and unpredictable that it just kills me not knowing what I'm waiting for.

More Answers

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L.O.

answers from Chicago on

My friends sisters child, who I think of as a Nephew, is now 14. His went away around six I believe, which is in general early. It was scary for her for the longest time, because every time he got a cold or a sneeze(anything to make him uncomfortable or even slightly trigger a fever), there they'd come. His delays started off heavy, then went away. He's now doing well in school.

Unlike my Brother, who has PCSD(partial complex seizure disorder), they do go away.

BTW, define normal?

My brothers seizures came out of nowhere, it seems like he had just gotten the series of surgeries to correct an issues with his nose that caused frequent unstoppable bleeding finished, his Asthma under control, and he was able to hang out with his friends again, and then the seizures started. They were unpredictable, terrifying in it's randomness. Until we figured out what they were, it was like walking on eggshells, one second he was fine, the next he was shaking and trying to muscle his way past me to the outside, and nearly succeeding. One where he was shaking and muttering things we didn't understand. Another issue had him staring out the window mid-bite of his lunch, then two hours later he continued like it was nothing.
Once we found a competent pediatric neurologist, his quality of life changed. He went from thinking the world was ending, to anything is possible. She found a good medicine for him, and he was able to do almost everything, including the hallowed "get a license".
Then there was the whole issue with dealing with substitutes thinking he was the class clown(he was, but not with that), and trying to "set an example" by slamming his head on the desk(we had a standing rule that if he was asleep in class, let him sleep because he had just had a seizure, and a secondary would be triggered by waking him), then setting off a second seizure, or shaming "the village idiot". The second one got the surprise of a life when he looked at the board and answered the unasked question, then said, "Look up left partial complex seizure disorder with halos, please, then call a 'village idiot' again. Please." She had no clue that my brother could hear her through a seizure.

I empathize with any parent dealing with seizures. Many types do go away with no lasting effects. But even if they don't, many can enjoy "normal" rewarding lives, providing you are positive, focused on general well-being, versus his "illness" We never let him use his seizures as an excuse. In school, he did thousands of pages of make-up work and extra tests and quizzes to make up for the seizures he had in class while learning to control them. He was active in as many things as he wanted (only one we didn't was swimming), and barring lawn mover, he did many chores with the rest of us. He had out of state field trips and many camping trips with pals. Was it easy? No. We never sat back and waited either. We looked up all treatments, and experts, and read stacks of books higher than your ceiling on the subject.

Once he knew he had love and support, he aimed high. He's now on his final couple years of schooling to be a pharmacist, and engaged to the love of his life.

Hang in there Mama!

4 moms found this helpful
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M.P.

answers from Portland on

here is a site that states the following.http://professionals.epilepsy.com/page/GEFS.html

"Seizures usually remit by mid-childhood (median 11 years). Development is usually normal."

I know you're wanting info from personal experience but thought this might help since no one is answering this tonight.

2 moms found this helpful
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A.S.

answers from Boca Raton on

I don't have any answers but wanted to send a virtual <<hug>> (not that it helps any).

I'm so sorry you guys are going through this. :/

2 moms found this helpful
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A.T.

answers from New York on

Yes, unfortunately it is a sit and wait game. You don't know when they are coming and they just happen. Hopefully he will outgrow them or develop a pattern of triggers that you can see and be able to prepare when you see them. Watch closely and you will see that there are triggers and hopefully you will learn to recognize them and handle when necessary.

1 mom found this helpful
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C.S.

answers from Miami on

Dear L.,

My husband's grand mal seizures started out of nowhere when he was 27. We have our ups and downs. We went 18 days short of 5 years without a seizure and then a whole bunch of breakthough seizures while they got the meds under control again. No reasoning behind it. I am not trying to depress you but that is our story. I know how scary epilepsy is. However, you are right, there are no real answers. Try to find an epilepsy support group - it might help you. There are also online communities.

I also have a first grader - there are no ways to know if our children will have a normal life. He cried last night that he didn't want to go to school today because of the tragedy in CT on Friday. He had found out about it from a friend's older sibling and I thought we had addressed his fears. All of those children were living "normal" lives when they went to school on Friday. Take each day as it comes and do the best you can do, try to love your son for what he is and not what he isn't. Hugs, C.

1 mom found this helpful

S.L.

answers from Kansas City on

I don't know if this is mainly febrile seizures you are talking about. Does your child have fevers with the seizures? Our grandsons had seizures, febrile, only when having the temperatures that spiked. They are fine now and no seizures for some time now. They are delayed in any ways. Maybe you're talking about something other than febrile seizures.

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