Epilepsy: seizure free and off medication. ANYONE????

Torey - posted on 11/02/2010 ( 11 moms have responded )

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Remission

* 70 percent of people with epilepsy can be expected to enter remission, defined as 5 or more years seizure free on medication.
* 35 percent of people with mental retardation, cerebral palsy, or other neurological condition will enter remission.
* 75 percent of people who are seizure free on medication for 2 to 5 years can be successfully withdrawn from medication.
* 10 percent of new patients fail to gain control of seizures despite optimal medical management.
(http://www.epilepsyfoundation.org/about/...)

75 percent of people who are seizure free on medication for 2 to 5 years can be successfully withdrawn from medication.
Really? If this is so true than why have I not heard of any child having not going into remission and still on medication. When we first met with the doctors they all gave hope of after 2 years of medication that my daughter would outgrow epilepsy and she would be fine. They said same 75% of kids outgrow their seizures.

I'm looking for some hope. My three year old has been on Depakote for over a year and half. One doctor wants to keep her on for 2 more years because of abnormal EEG. Another doc says we can take her off now but we will only have a 50% chance of remission or 50% chance of never having a seizure again. I don't know what long term risk I am taking with her life and need some parents who have had this experience.

So, MY QUESTION: HAS A CHILD REALLY BEEN TAKEN OFF MEDICATION AND NEVER HAD A SEIZURE AGAIN??

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Torey - posted on 11/02/2010

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Thank you Emily!! That is what I am afraid of we take her off and than we have to start all over again. I'm sorry to hear about that and I hope this one will work for you guys. Also, my thoughts are, we give her depakote twice a day for one thing (seizures) but the side effects are just terrible. Solving one problem but adding 10.

Emily - posted on 11/02/2010

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We have gone through similar things over the past 3 years. My almost-4 year old son has a seizure disorder and has been on phenobarbital since 11 months old. After a normal EEG, we weaned him off the medication.. unfortunately after about 3 weeks, he started having seizures again. We're currently on our second trial of going off the medication, but if it doesn't work, it doesn't work. I'm okay with him being on medication if it controls the seizures.
p.s. you might get a better response from the epilepsy/seizure disorder community

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Anna - posted on 02/18/2011

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like a few of the ladies above, this is not about my child, but about me. when i was 12, after a year or so of being seazure free i got weened off my meds and i was seazure free and med free for half a year untill i relapsed and had to be hospitalised. only to be immune to the combination of meds that had been working! i decided that if taking meds was going to keep me operating properly then i didnt really have a choice. i really hope things turn out for the best for your son and all the stories above. my thoughts are with you all.

Connie - posted on 02/16/2011

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My son started having seizures when he was about 6days old and when he was 10 days old I almost lost him. Doctors put him on phenobarbatol and after the meds was finally adjusted he went 3yrs of no seizures doctor said take him off med he was 5yrs old and one week off meds he had another seizure at school during nap. So back on the medicine but it was Trilepotal. He has been on it for 4yrs and no seizures but now doctor says try weining him off again. I am scared. He has been off for 9 days and no seizure I am hoping nothing will happen. Does anyone know how long before I can breathe again? When will I quit worring about it?

[deleted account]

I decided long ago that if medication is what's necessary to keep me seizure-free, so be it. It's a small price to pay - I have horrible memories of the days when I had lots of seizures!

Melissa - posted on 11/02/2010

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I guess I can't really give you a good answer, because I'm the one with epilepsy...not my child. And since I'm an adult, its probably much different with me. I was told that I'm most likely going to be on meds for the rest of my life. I really hope your daughter can go seizure free without medication....because I would give anything not to have to take another pill

Firebird - posted on 11/02/2010

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My friend has a 2.5 year old daughter who was on meds for epilepsy for about 15 months. She is now off those meds (for about 5 months now, I think) and still seizure free.

[deleted account]

This isn't about a child, but about me. I've had epilepsy since I was a teenager. My last seizure was when I was pregnant with my "baby" who's now 24!)

I've been on a couple of different medications, usually as new developments happen. I'm quite happy to stay on medication forever, as it's kept me seizure-free all this time.

[deleted account]

I know I cannot compare a child to a dog, but it is the same experience in trying to reduce and eliminate meds. "Hercules" started having full blown violent cluster seizures when he was about 1 1/2. So the first medication was phenobarbital which didn;t work at first, so the vet increased his dosage. Then he went a good 3-4 months without a seizure, and then the cluster seizures spanned days on end. So, not only back to the pheno with another increased dosage, we also include potassium bromide. He's been on the double meds for just over 2 years now. He still gets cluster seizures, but they are more controllable, and less frequent. But, at least for this mutt of mine, he will live with meds for the rest of his life.

On the more positive side, I have a student who has a magnetic implant. When she feels a seizure coming on, she passes a magnetic strip across her chest. She says she hasn't had a seizure with the implant, but she still takes daily oral meds. Best of luck to you and your little one.

Torey - posted on 11/02/2010

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Please keep me posted. I would love to hear how your little guy is doing. He looks so cute.

Emily - posted on 11/02/2010

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I know exactly what you mean. That's why we want to wean off the current med. If the seizures come back, his neuro said we could try a different med with less side effects.

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