Why are they getting worse?

[Julie H.]

My son, who is 17 now, was diagonsed w/ "generalized seizures" 2 years ago. He had the petit mal seizures, and was put on Lamictal. Thought he was doing much better, and at Christmas this past year, he had a grand mal, which scared me to say the least because he has never experienced one like that before. It lasted 4-5 min. and when he came to, he didnt remember what happened. Doctor increased his meds, and he seemed to be better. 2 weeks ago, he had another grand mal, although it didnt last as long, he fell from a standing position, and again doesnt remember. I spoke to his doc the following day, who told me he was going to "drag his feet for 2 weeks" before he decided to do anything.. when i asked about driving, he said that he needed to wait 2 weeks..??? WHAT are you kidding me, is what I thought.. anyway..we decided to go for a 2nd opinion.. But I am wandering why his seizures have gone from the "spaced out" kind to full blown grand mal? Has anyone else experienced this? Any help would be appreciated, while we are waiting to get set up at next doc.. Thanks!!! Julie H.

[Rae1889]

Wow, sounds like lots of people had seizures this christmas. wonder why?

Well I can understand about the wait. usually it takes 2 seizures before they do anything else and there was a big space between them. so I think the doc wants to stay on the med the way it is and see if anything happens in the next two weeks. If it happens again, then his meds need to be upped or changed.

Has he had a growth spurt since christmas? or changed in any way? new job? done school? spending too much time in the sun? what were the circumstances. try and find common links between the two seizures, and start a seizure diary for him. mark down what he eats and when. When he goes to bed and wakes up. when he drinks anything. when he takes his meds. Meetz1064 has a great list to help find a link in things. it sounds teadious but it will help find some triggers for him.

Stress could be a big one. or lack of sleep, or not eating right?

[Nakamova]

Hi Julie --

There can be a lot of factors that lead to a grand mal -- teenagers have more volatile metabolisms, so they're more vulnerable. Could your son have missed a dose? Or had any of the stresses Rae mentions? Sometimes it can be a combination of stressors that pushes you "over the threshold" from one kind of seizure to another. In my case, it was was fatigue, low blood sugar, emotional stress, too much aspartame, all in combination.

Though it's frustrating, the doctor's wait-and-see response isn't necessarily wrong -- his options are to do nothing, to increase the dose, or to change meds entirely. The first option is the safest in terms trying to get a sense of what's going on while minimizing side effects. The other two options involve dosage transitions, which can be stressful -- sometimes tapering up down can actually cause seizures.

However, it doesn't hurt to get a second opinion. I recommend that you write down questions for the doctor, as well as his responses, and keep a journal of your son's seizure and medication history to help bring any new doctors up to speed quickly.

Best,
Nakamova

[Jbo57]

I sense your frustration and can totally understand it. The longer I study epilepsy and seizures, the more I'm convinced that there is just a lot about the brain that we just don't know. I have been on the same, old medicine (Dilantin) since 1982 and they cut my seizures down...but didn't eliminate them. I know it's hard to do, and I'm struggling with it right now myself, but be patient and give them a chance to figure it out. God bless.

[Cint]

Hi Julie,

When I first started having seizures, I was 22 years old. They initially started as complex partial (formerly called petit mal) and my 1st foolish dr. said I was hypoglycemic, without performing any blood tests. Within about 8 months, I had my first tonic clonic seizure (grand mal). I've tried 11 meds, had a LTL and still had tonic clonic seizures. I now have the VNS and have complex partial seizures. Yesterday I ended up having 4 complex partial seizures in 1 day, one in front of my neurologist.

Oh and BTW, no driving for a long time..........

I sure hope your son has better success than I have.

[xenome]

Hi Julie, I started having petit mal seizures when I was about 14. When I was 25, I had my first grand mal and had both for 4 years. I lost my drivers license, lost my job, and I lost my wife. I became depressed and suicidal.
So then last year, my father dies. After that I was having multiple grand mals a week and so my neurologist added another medication called zarontin and I have been seizure free ever since.

After my first grand mal, the doctor said petit mals were a "juvenile" seizure disorder and they go away in alot of people when they become adults but in some cases they get worse, like mine.
Maybe thats true, but at the time it sounded to me like he didnt know what the hell was going on.

This is very important though, this next part of his life may get tough so you have to make sure his emotional needs are taken care of too. He needs to endure through this, until you find a treatment that works for him. I am just worried about about his emotional health also. For me, I didnt think Id still be alive today but I am glad I am.

I hope everything works out for you both, good luck!