Hello,
My 17 year old son had his first seizure last month. He had an EEG, EKG, CAT Scan, Bloodwork and and an MRI. All proved to be normal and the assumption was that it was a one and done situation. He has since gone to live at college for the summer semester and was the happiest I had ever seen him. Until Tuesday when he had another Grand Mal seizure in the dorms. Luckily, his fellow students reacted well and assisted him until the fire rescue arrived. They transported him to the University of Pennsylvania's ER. Another EKG, bloodwork and CAT scan and now the need for medication. Keppra was the drug of choice, 500mg to be taken twice a day.
He is now back in the dorms and all is not well. He is wondering why this is happening to him. He is feeling a lot of side effects which I know is to be expected in the beginning. He is extremely irritable, feeling high, nauseous, memory loss, depression and having trouble waking up. He is also complaining of vivid nightmares. I suppose I am looking for reassurance that he will be all right in school. That the side effects will lessen and he will be able to meet his academic commitments. More importantly that he will return to his kind,funny,happy,lovable self.
Any help will be greatly appreciated.
Anne

So sorry to hear that your son is having problems, especially when so many other changes are happening in his life. Dealing with a new illness is difficult.

If the side effects are truly an issue, you should check with the neurologist to see if there is another alternative that may work better with him. Different medications affect everyone in different ways, so something else may work with fewer side effects.

If your son is really having difficulty coping with things, a few visits to a counselor may help him sort things out. Counseling may be available through the university's health center.

Finally, you should look into the university's ADA compliance office. They go by different names on different campuses, but there is an office where they meet with students and make arrangements to deal with disabilities. Depending on how the seizures and medication are affecting him, he may be able to get excused absences, note-taking assistance, extra time on exams, prolonged deadlines, or other accomodations. Even if he never needs them, it's good to know that it's there.

You could also check with the university or the hospital to see if there is a support group for people with seizure disorders.

Thanks for your good advice. I will look in to the things that you mentioned. I have gotten a lot of information from reading some of the posts on this board which makes me feel more empowered during this difficult time. I now wonder why they didn't wean him on to the medicine. That may have lessened some of the side effects. When we go to the neurologist I will be armed with many questions.
Thanks Again,
Anne

Hi Anne. I take Keppra with three other epilepsy meds but Keppra seemed to make me very tired when I started it and every time it was raised. I'm taking 1500mg twice a day now. I've gotten used to it. Most AEDs (anti epilepsy drugs) have side effects like making you tired or some make it difficult to sleep. I think everybody who developes epilepsy at a later stage of life, other than an infant, wonders why me.

Many times eegs and MRIs or CT scans don't show a reason for epilepsy. I think the blood tests were looking for drugs or something like that, that could cuse seizures. Many people are misdiagnossed for years before being medicated, I was. Todays brain imaging is much better than it was just a few years ago but it still requires a certain amount of area to be damaged to show on an image.

Tell your son to be very careful at college if he's going to be there alone. It's a real temptation to try to be like the rest of the kids and drink or take drugs. He just can't do it or he'll end up in real trouble. I've had diabetes since I was 9 so I know a little about limits at college. I didn't develope epilepsy untill I was in my late 20's. I don't want to lecture but I feel it's very important and I'm sure you know already.

Good luck with your son and tell him I wish him the best from some guy who also has seizures. Jeff

I'm sorry to hear about your son.
Maybe my story will help you... I had my firsat GM seizure when I was 19, in the break between my first and second semesters of college. From there, of course, I had to go through all the medical tests, and the meds, and not being able to drive (I commuted to school, so that was a curse). This extended into my second semester, and I was very depressed and scared for 3 or 4 months. And I had to rely on other people to get me to and from school 20 miles away, and I had horrible side effects from the first meds I was on- Dilantin, and my seizures weren't getting better either. So then I had to switch to Tegretol, which worked a lot better, but it made me so tired that I was sleeping by 10:30 at night (which was very unlike me). But things got better!! My Neuro found a dosage that was right for me, and I was able to drive again, and I started feeling better after not having any more GM's, and the auras became less, and the side effects started wearing off. Over the next few years, I still had to adjust my dosage, and add Keppra to the mix (which actually gave me no side effects), but I was able to live a normal life, and love college, and graduate with a Bachelor's in Computer Science last December.
So don't worry. I'm sure the first couple of months will be hard, but your son will make it through fine.

The item to know ahead of time with Keppra, is they like to push patients up to 3000mg/day. So be warned in advance.

As neutral as Keppra can be, some patients experience "KeppRAGE" (emotional outbursts, uncontrollable anger/crying) when the ramping (increase) is done quickly for their bodies. Every patient is different.

As for a college student, that "group" of people need to stay away from over-endulgous (drinking). That can have a major effect on seizures, as can lack of sleep, stress, caffine, and other factors (FINALS!). Simple items such as flashing lights may enduce seizures in people.

I've been on Keppra for about 7 years now, only recently (this year) reduced from 3000 due to high blood results. From past history and talk with friends, poly (multiple meds) often seems to work best. I'm one who started on seizure meds before I was even in Kindergarden.

So YES I've been on a lot of meds "over the years". Thankfully in Tech school I was pretty stable. <grin> We learn as we transfer from med to med what the drug can do and the sideFX.

--Travis

i know things will be tough for him in the beginning, as im about to go into my sophomore yr in college. ive had numerous seizures in college and just to reassure you, the kids there are much more mature then i figured they would be. they were very nice and handled my seizures well (except its annoying that they always call ems!!).

i would recommend him talk to the dissabilities office. it can help w/ alot of things. i didnt do that last yr but i think i will this yr cause im on new meds (zonegran and about to add keppra) that affect my memory. so, to make a long story short im allowed to get extra time on tests and other accomodations if needed. hope that helps!

I don't know if you have heard more than enough on the subject by now but don't let it deter you than tests do not show a reason for seizures. I had grand mals at 17 yrs of age, they started me on dilantin and 30 years later, I have never had a grand mal since. I do have conscious aura type seizures. Anyways, I think it is hard for your son to wonder why there is not a "reason". I used to and it took 15 yrs for them to find one. There may never be one. By now they should have found the correct medication that does not cause nightmares or so many bad side affects. Hope all is well!

Most people never know the reason for their seizures.....college life- all nighteres, drinking, erratic sleep can all trigger seizures.

I just started on Keppra about 3 weeks ago...have been tired, and zippo appetite; can go days without eating, and not even think about it. I'm hoping that the fatigue goes away as my body gets used to the dose I'm on (started slow, and worked up to 500 mg twice a day). I'm on disability for seizures, so don't have to deal with schedules and added pressures of school; but have other pressures financially and trying to move- that can also effect sleep cycles, so I have to make a concerted effort to get sleep.
And no drinking. Some people can have a little alcohol- I choose not to, simply because I'm on so many meds.

Encourage him to keep a diary of what goes on before the seizures, and what he remembers about them.