14 yr old son having seizures in sleep mostly - Epilepsy Message Board

aprilr607 · 07-05-2004, 08:48 PM

About a month ago i found my 14 yr old son unconcious in his bed after rushing him to the er and all the tests in the world had been done we still have no answers. He had been taking accutane, the doctors said it could be a side effect from that but it may also be brought on by puberty we just dont know but it seems to be happening mostly while he is asleep early in the morning.
Has anyone experienced this, do you have any information you can give us. Do you know what the percentage is of a teens seizures stopping.

If you have any storys or information you can give us we would really appreciate it.

Thank you,
April

tkdmom96 · 07-05-2004, 09:34 PM

Hi April, Welcome to the boards!

Please read some of the threads that discuss sleep seizures. I'm surprised the doctor didn't want to remove the Accutane first, to see if that was the cause. Usually all "new" items that have entered one's life are looked at first. New med, new food, travel, recent injuries, then the history looked at.

How many times has this happened? According to some of the info I've read here there is a time in the sleep cycle that can have something to do with seizures. Either just before awakening or at awakening. I would recommend looking into finding a Neurologist or an Epileptologist to do a sleep EEG in the hospital, an EEG and an MRI. These are all diagnostic tests to confirm E or find where the seizures might be coming from. Do they happen frequently? Is he on any anti seizure meds yet? Usually if there are more than 2 or 3 "unprovoked" seizures, it leads to a diagnosis of E.

There are great people here with lots of good info. Continue to ask questions, be as specific as you can (I know you're new to this), provide as much detail as possible (without sending out anything that would be TOO personal i.e.>your hometown, etc.) and you should get some direction.

I came here 2 years ago looking for info and that info lead us to a new specialist (Epileptologist), a years worth of testing, two surgeries in the last 3 months and our daughter has so far, been seizure free! She is 16, and has had seizures since 9 months old.

There is always hope! Hang in there!

Vicki

aprilr607 · 07-05-2004, 11:47 PM

Thank you so much for your reply, yes after the first set of seizures a month ago he actually had a total of three that day, 3 days in ccu, mri (normal), cat scan (normal), lumbar puncture (normal) and 2 eegs that were also normal we went home on Keppra meds and we did take him off the accutane and for almost a month we thought there were no sz but then i found him unconscious again just 20 minutes after waking him up to give him his meds, he must have had one just after i woke him up but he does not seem to remember any of it. So I rushed him by ambulance to er again and another eeg was done and there was a spot on the right side of the brain that showed sz prone activity. We then had him moved to Texas childrens hospital and he spent 2 nights there and they released him on Trileptal. We have a sleep deprieved eeg scheduled this coming friday at the blue bird clinic ( neuros at tch) but i am not suire that we will really have any answers until he is seizure free for 2 years that is when they say he can go off meds. So far we are 11 nights with no sz.
Does anyone know the percentage of adolecents starting sz and then they go away or do they usually stay or does anyone really know?

I am really glad to hear about your daughter and the surgery being a success that is great news, i hate that she had to go through it but there could be no better age than to gain that personal freedom again than at 16.
I am worried about my son and the mental stress he must be going through although he says he is fine i often worry if that is true. Well I hope to hear from you soon.

April

wokstar · 07-06-2004, 12:18 AM

Hey April,

I too started getting seizures in my sleep around the age of 15....we did not know the cause. I was diagnosed with epilepsy after a sleep deprived EEG, ,and went on various medications; until we found one that worked. In the first month after my diagnosis, i still got seizures while sleeping like your son (that is because my tegretol meds were not working...this happened for a while..then switched to epival, still were uncontrolled, and finally 3 years ago started lamictal and it is working!).

Though, when only getting seizures while sleeping, it is sometimes hard to determine if one has had one, if no one witnesses it. Have u ever witnessed your sons seizures? Or only have found him unconscious? What my parents did was use one of those baby monitors. My parents had one and so did I, if my mother (the light sleeper) heard anything unusual, she would check up and was able to discover some of my seizures that way. Though we only did this at the beginning of my diagnosis, (for a few weeks or so).

I"m not sure about the statistics for discovering epilepsy in the teenage years. Epilepsy is discovered at all ages....some "grow out of it"...some don't. I"ve heard of childern who are born with it, but then later seem to stop having seizures.

I first discovered i had epilepsy at age 15, I am now 22...and still experience seizures. So who knows about the future...only good things i hope, haha!

aprilr607 · 07-06-2004, 10:43 AM

Thanks for the info, yeah i have put a monitor in his room but sometimes the sz are silent or not much noise at all. We have witnessed 2 sz each time in the hospital after finding him in his bed, it almost seems like if you disrupt the sleep cycle by waking him up that he is sure to have another or maybe 2 that day. So far we are almost 2 weeks with no sz and we are taking Trileptal so hopefully it will work.
I feel so bad for him because i know he feels so alone and that everyone is watching him but he seems ok for the time being.
How many sz have you had and how often, do you go to the er evertytime you have one or do you just ride it out, they have given us emergency med in case of 5 minutes or longer and only then do we go to the er.
Well thanks again for all of your info hope to hear from you again.

April