Epilepsy Foundation

Hey Everyone.....i'm new to this site.    :)    My son was diagnosed with complex partial seizures when he was 7 years old in 2007.  He's now 10.  All his test were normal and they have not found a reason for his seziures.  It was a bit rough at first when they started him on zonegran but we eventually switched to Keppra.  Once he started Keppra he went seizure free for 2 years.  We started trying to take him off his medicine in November 2010.  He did good through the 6 weeks of dosing down..but the first night that he didn't have any medicine at all i woke up with him having a seziure.  So now he's back on the full dose.   His doctor says he has a chance of outgrowing these seizures...but i felt so let down when he had this let seizure.  Although, i do feel truly blessed that he's been able to be controlled with the medicince.   He was so upset when he woke up from his seizure and we had to tell him he needed to get back on the medicine.  He just started crying saying he didn't want to be on it anymore...that broke my heart.   :(      So....has anyone ever know anyone or if you yourself have outgrown complex partial seizures?

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“Hello, this is Mary Ann, an Information Specialist with the Epilepsy Resource Center. The Resource Center provides information about epilepsy, community referral information for support and assistance, and literature resources to increase understanding of the condition and improve management of the condition. I am very interested in learning more about the needs of the community and providing support through participating in this discussion.”

M Thornton
The Epilepsy Foundation
The Epilepsy Resource Center

Hi Stephanie:

 

I'm so sorry to hear about your son's breakthrough. Hopefully you'll be able to try weaning again soon!  My son started having complex partial seizure's when he just turned seven and he will be 10 next month. We've never been able to control his seizures and we are now being worked up to see if he's a surgical candidate.

 

I am also interested in the answer to your question.  I've read different things, such as there is a 50% chance.  Our regular neuro says that the chance is about 90% but I have no idea where he is getting this number, as I've never seen it that high.  He is not a big fan of the surgery since he believes that most kids will outgrow it anyway. 

 

Hopefully someone else can weigh in the chances of outgrowing complex partial seizures.

 

Take care,

Theresa

Thanks for your reply Theresa.  I'm sorry to hear that your son's seziures haven't been controlled.  I went to a seminar they had here in Houston at Methodist Hospital last week on eplipsey.  They discussed the surgery alot at the seminar and said it had a good success rate to eventually be seziure free.  I hope all turns out well for your son.  Like you i've also read and heard many different percentages in term of the outgrowth of complex parital seizures.  My doctor is saying my son has a good chance since his are controlled but then at the seminar the epileptologist told me that the prognosis for those seizures are good for outgrowth and that they're usually on life long medicine.  So i'm waiting til our next appointment in April with my sons neurologist to get his thoughts on what the seminar said. 

Theresa said:

Hi Stephanie:

 

I'm so sorry to hear about your son's breakthrough. Hopefully you'll be able to try weaning again soon!  My son started having complex partial seizure's when he just turned seven and he will be 10 next month. We've never been able to control his seizures and we are now being worked up to see if he's a surgical candidate.

 

I am also interested in the answer to your question.  I've read different things, such as there is a 50% chance.  Our regular neuro says that the chance is about 90% but I have no idea where he is getting this number, as I've never seen it that high.  He is not a big fan of the surgery since he believes that most kids will outgrow it anyway. 

 

Hopefully someone else can weigh in the chances of outgrowing complex partial seizures.

 

Take care,

Theresa

Thanks for the reply!   I'm glad you're okay after your accident.  Thanks for sharing your story.  It's great to be part of this community and read some of people stories and talk to people for support.  I think it's great.  I try to talk to family and friends...but sometimes I feel they can't totally relate to my fears since almost none of them have seen my son's seizures.  My son had a lot more energy when we were taking him off the medicine and even started doing better in school...now that he started the medicine again...he's struggling a lil bit.    

carli ratliff said:

I stared seizures at age 8. Every year I had a couple grandmal seizures. I started having petimal, complex partial, absence, left temporal lobe seizures later on. I think that's all of them... Anyways

I didn't go on any medications until age 14 I believe (my mom remembers the exact date). I had no more seizures after that, even weening off the medication at age 16 I had none.(I had withdrawl when I first got off the med) I started having seizures again though 6 years later (2 years on med, 4 years off med w/o seizures) We can't find a med to stop the seizures now, I have less though while on med.... Still I can't drive, that's what bothers me the most. (my first seizure after 6 years seizure free was driving) I was fine, the car was totaled.

 

Long story short...

 

I can see him being so upsett that he has to be back on his med. It seemed that when I was off the medication I had so much energy! The medications I'm on now give me anxiety.

 

I don't know.  We were hoping that my son had outgrown them. He has petit mal seizure with secondary grand-mal, thought we had thought for years he had generalized seizures because the petit mal seizure only last for just a few seconds.     He is now 16. His seizures were controlled for 5 years, or as far as we know they were...  He was on carbatrol & depakote for at least 9 years.  His neuro convinced us to start taking him off the medications.  We started with the depakote.  He was down to 1/2 a dose & still on full dose of his carbatrol and had a seizure.  We put him back on the full dose.   He was okay for about 2 months.  He has had an episode at every month since.   Anyway, we had hoped he would outgrow...but so far not so lucky.     We have taken him off the depakote & put him on keppra with the carbatrol.   So far so good...keeping figures & toes crossed.   I had a cousin who is now in her 40s and did not out grow.    I am hoping that maybe after puberty.....however it will be a scary time taking him off meds again.       I wish i had better news to provide you with!    Also, on a side note, since your son is getting to the teen years...make sure that his sleeping patterns stay pretty steady.    My son was staying up late & sleeping in on the weekends.  Then on the week days he would have to get up early.   His neuro said very important that the sleeping paters stay the same, even on weekends.  Especially true, I guess, for my son as his activity seems to happen when he is sleeping and then has the seizure either as he is waking up or shortly thereafter....     

Hi Stephanie - I'm so sorry to hear that your attempt to go med-free wasn't a success. I know it is heartbreaking to see your child upset and feel so helpless. My daughter has cp's too and we are still struggling to get control. I know there are patients who have outgrown their seizures - unfortunately those families don't check in on the forum too often - so don't be too discouraged if you don't get a positive response.  In the meantime, try to focus on the fact that you've been successful in stopping the seizures with Keppra. There are lots of patients who are on epilepsy meds permanently and live completely normal lives.
Thanks for the reply.  :)    We just take it day by day and hope for the best

Ann R. said:
Hi Stephanie - I'm so sorry to hear that your attempt to go med-free wasn't a success. I know it is heartbreaking to see your child upset and feel so helpless. My daughter has cp's too and we are still struggling to get control. I know there are patients who have outgrown their seizures - unfortunately those families don't check in on the forum too often - so don't be too discouraged if you don't get a positive response.  In the meantime, try to focus on the fact that you've been successful in stopping the seizures with Keppra. There are lots of patients who are on epilepsy meds permanently and live completely normal lives.

Hi Stephanie,


I was diagnosed with Complex Partial Seizures of the Left Temporal Lobe when I was 10. I took Tegretol for two years and quit taking it when I was 12. I haven't had seizures since. I'm 32 now. I went through puberty at age 12 and that may have something to do with my seizures going away. Best of luck to you and your son...

 

Brandy

Thanks for your reply Brandy.   :)   I appreciate it very much. 

Brandy said:

Hi Stephanie,


I was diagnosed with Complex Partial Seizures of the Left Temporal Lobe when I was 10. I took Tegretol for two years and quit taking it when I was 12. I haven't had seizures since. I'm 32 now. I went through puberty at age 12 and that may have something to do with my seizures going away. Best of luck to you and your son...

 

Brandy

I wish. Our son went 4 1/2 years seizure-free on Dilantin, so the doctor agreed to wean him off. After two months off meds, he had a seizure (happy Halloween!) Now, he's back on meds and probably will be his entire life.

Elaine

I'm sorry to hear about your son.   How old was he when you took him off the medicine?

jeremysmom said:

I wish. Our son went 4 1/2 years seizure-free on Dilantin, so the doctor agreed to wean him off. After two months off meds, he had a seizure (happy Halloween!) Now, he's back on meds and probably will be his entire life.

Elaine

Hi Stephanie, my daughter was diagnosed with benign rolandic epilepsy when she was 5 with complex partial seizures.  Second year, EEG showed epileptic discharges on both sides and dx was changed to temporal lobe epilepsy.  Third year, EEG showed a tonic clonic burst in the entire brain in addition to the other stuff and dx was changed to mixed seizure disorder.  She has been on Keppra 3x/day since her diagnosis.  Fourth year, EEG was totally normal, she is 8 1/2now, they tapered her meds and she has been completely off meds since February 1st and is doing great.  When things looked like they were getting progressively worse, they suddenly got better and we are hoping they stay that way, so keep your hope up.  Best of luck to you, I hope that your son outgrows the seizures.  I have been told that when kids go through puberty their brain changes a lot and that is when a lot of kids outgrow their seizures.   Best, Safiye

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