Help for my child with new dx of epilepsy - Epilepsy Message Board

Bncinlove · 11-06-2004, 10:16 PM

My son had a seizure a few weeks ago. He was twitching and was staring blankly and didn't hear me speaking to him and when it was over (30-40 seconds) he said he felt funny. Anyway, after the EEG we were told that the eeg was abnormal. They detected a spike in the eeg where there shouldn't have been one. He hasn't had one since and I don't want him on any more meds. He is also on meds for ADD. I hope I made the right call. The doc said that it was epilepsy. I thought that he had to have two seizures for it to be diagnosed. Can he be diagnosed with just one? Was it alright for me to decline meds at this point? I have also been having some problems and am having an EEG in the next few weeks. I constantly smell cigarette smoke for no reason. Nobody else smells it, I don't smoke, nobody in my family smokes. It's strange. Also been getting lots of headaches. I don't know what's going on. Thanks for any help you can give.

PammyJeanne · 11-07-2004, 08:14 AM

I can only say you are doing the right thing by checking this out.
I "smelled" burning for nearly 2 years, I thought it was the stress of my terrible marriage. I was also "hearing things" but only from the right side.
I would awake from a sound sleep "smelling" something burning.
I also had what I called the "alice and wonderland" feeling drifting out of my body then feeling as though I was stuck in the upper right hand corner of the room and feeling as large as the room.....
I kept all of this to myself.
Never feel like I did....tell your doc everything. I was told later on that I had classic text book symptoms.
Complex Partial.... Petit Mal, and a few Gran Mal.
Many many years have gone by with many many different seizure medication. My doc has sent me to the best for second opinions. He is intelligent and kind when I needed him to be.
I am not seizure free, and do not expect to be.
I am not able to work, my memory is terrible, but with God's grace, I am here.
Good luck to you

Pam

tkdmom96 · 11-07-2004, 10:36 AM

Hello & welcome,

I would definately keep an eye on your son and should he have another, I would absolutely look at medication or further testing (MRI). I'm a little uncomfortable that his EEG is showing spiking and the fact that the doc mentioned E. I'm sure you are watching him closely.

As for yourself, definately check into the "auras" you seem to be having. Sometimes it is scarey to find out things we don't want to know, but in the long run, it is the safest for you and your family.

Good luck to you...and we have a 16 year old daughter who has had E since she was 9 months old. We have run the gambit, and she just had surgery in June and has been seizure free 5 months today. There is hope!

Vicki

buliem · 11-07-2004, 05:50 PM

Hi,

My nine year-old son has absence seizures or Petit Mal Epilepsy. Some teachers thought he had ADD and they actually pushed us in that direction. Turns out it was epilepsy that was causing his inattention. It wasn't until his eyes started rolling up into his head during his seizures that we realized he had E. A lot of kids that have Absence don't do the eye roll thing. They just stare. We figure that was happening to my son and then it progressed into stronger seizures that caused the eye rolling. I'm glad I refused to treat him for ADD as stimulant meds can lower seizure threshold. That said, I've read that a percentage of kids have both.

Whatever happens I hope your son's doctors figure it out. The EEG worries me too. My son had three seizures during his EEG through hyperventilation so it was conclusive for absence. It showed the typical spike/wave pattern.

Don't second guess yourself. We all do the best we can.

Julie

jake's-mom · 11-08-2004, 06:19 PM

Julie is right. ADD medication can trigger seizures. Teachers pushed me to the Pediatrician for my 8 year old son's attention problem. He prescribed Adderall and he ended up having a Grand mal Seizure 20 days later. He was spacing out in school but his eyes didn't roll back. Just staring and sometimes blinking. Keep an eye on him especially at night. I couldn't figure out why Jake was all of a sudden wettin the bed. He was having seizures at night.

I would ask your Dr. about the possibility that he may be having absence seizures instead of ADD.

I know exactly what you are going through.
Good Luck
Wendy