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Seizures only during sleep

Sat, 02/12/2011 - 16:03
Hello! I'm new to this site...I don't have Epilepsy myself, but my 8 year old son does. I came here hoping to find some answers...if anyone has had any experience with this. My son had his first seizure when he was 23 days old. He started out with Tonic Clonic seizures and progressed into Grand Mals. The only thing that has remained the same, is they only happen while he's sleeping. I am fortunate enough to live in the Cleveland area...with access to some of the best hospitals in the US...and no one has been able to give me an answer. Doctors have never been able to pinpoint an exact location for the seizure activity. He's been through countless EEGs, MRIs, PET and CAT scans and no answers to be found. And his seizures have been changing so drastically. When they progressed to Grand Mals...it was always the same..he would wake up, let out an ear piercing scream and go into seizure activity. Now, it seems as if he's aware that they're happening, and trying to get up while they're occurring. He is currently on Triliptal..after starting out on Phenobarbital and Topamax, and he's had breakthrough seizures on all meds. What I'm wondering is this...has anyone out there had any experience with this? With seizures that only happen during sleep. Either personally or with a child/loved one. I would appreciate any feedback! Even if just to share your story! Thank you for taking the time to read this!

Comments

Re: Seizures only during sleep

Submitted by sheezbaak1 on Sun, 2011-02-13 - 02:48
Hi Momo. I am new also and a mom except im  the one with the seizures. I have grand mal and abscence and they have been in my sleep alot for the past year and in my sleep here and there throughout my life. I was told I had epilepsy when I was only having the absence seizures at around 12 yrs old. My life has gone from one seizure to adding on another, to getting worse due to body changes and on and on. Mom, make sure you find your own reliable resourses to help continue. You have to also take care of you in order for your baby to be strong. Change doctors if need be. love always

Re: Seizures only during sleep

Submitted by SagePixie on Sun, 2011-02-13 - 11:33

My daughter is 6yrs old. She has been having seizures here and there since she was about 6mo old. Her seizures are always at night and had been within the few minutes range until last year when she was 5. Her seizures ramped up in pain scale and duration. Also she seemed to be awake during them and trying to talk to me and move. Her seizures last between 10 min and 15 min long. In the begining of a seizure she is pretty aware but then around the 3minute mark the her pupils get REALLY big and she seems to become confused and not making sense anymore. She always goes back to sleep after a seizure. She doesn't seem to have much memory of the seizure and I haven't really told her anything about them. We call it 'that shaky thing'. She has been diagnosed with 'Benign Rotundic Seizures'. She has also had EEG's and MRI the haven't 'found' anything.  Until her doctors believe the seizures are causing her harm I won't put her on anti seizure meds as the side effects and possible organ damage freak me out.

My daughter is 6yrs old. She has been having seizures here and there since she was about 6mo old. Her seizures are always at night and had been within the few minutes range until last year when she was 5. Her seizures ramped up in pain scale and duration. Also she seemed to be awake during them and trying to talk to me and move. Her seizures last between 10 min and 15 min long. In the begining of a seizure she is pretty aware but then around the 3minute mark the her pupils get REALLY big and she seems to become confused and not making sense anymore. She always goes back to sleep after a seizure. She doesn't seem to have much memory of the seizure and I haven't really told her anything about them. We call it 'that shaky thing'. She has been diagnosed with 'Benign Rotundic Seizures'. She has also had EEG's and MRI the haven't 'found' anything.  Until her doctors believe the seizures are causing her harm I won't put her on anti seizure meds as the side effects and possible organ damage freak me out.

Re: Seizures only during sleep

Submitted by Momof3boys80 on Sun, 2011-02-13 - 12:01
Thank you Sage and Sheez the replies! That is the same thing my son is doing...trying to talk and move during the seizure. They only last about one to five minutes though. He always goes right back to sleep after the seizure too and after about 5 minutes, I'm able to wake him up. He never remembers anything happening. I have argued with doctors about meds...I fought to the bitter end about not putting him on Depekote. The side effects of that one really freaked me out. When he was on Topamax, he couldn't sweat...which was a side effect from that. He seems to be doing well on Triliptal...we just still have breakthroughs. As for diagnosis, our first neuro came clean and said he had told us Epilepsy because he couldn't put another name to it. Every Weds. the department heads would discuss my son at their meetings, and no one could come up with any answer. It's heartbreaking and frustrating to watch your child go through something you have no control over. I do find comfort in knowing that there are people out there who understand the situation!

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