Newbie

[mamacarol]

Hi Everyone,
I am mom to a soon to be 23 year old son that was diagnosed with epilepsy 3 years ago. It came from out of the blue, somewhat, but here is his story.
In high school my son began experimenting with pot. We knew he was smoking, but at the time was not overly concerned. Then he was caught and charged with possession of paraphanalia, and since he was a minor, his punishment was to see a counselor. I get a call from school one day saying that they had Drew in the sick room, and he had had a seizure in the hallway. They suspected he was on something. When I got there to pick him up, I took him to the ER, and I find out that he thought he was going to have to take a drug test that day at the counselors, and proceeded to try and clean out his system by drinking 9, 20 oz bottles of water from morning to lunchtime. It was a miracle he survived. The ER recommended he go to a neurologist, we made an appointment, but cancelled it, thinking the water "overdose" was the cause.
About 5 months later, he has another seizure at a college party, he had been heavily drinking, and we excused it because of the drinking. Then, about 4 months later, he has another one, for no apparent reason, so we made an appointment with a neurologist. The usual test were done, and the epilepsy diagnosis was made. He was put on Keppra,(dont remember the initial dosage), and from April of that year and throughout that summer, he continued to have seizures, each time the doctor would increase the dosage.
Each seizure was a grand mal, and the first time I saw him have one I wondered if I was watching my son die. It was terrible, as everyone knows. At this time, naturally he was under alot of stress, the side effects of the Keppra, job situation, crazy girlfriend, not being able to drive, etc., I was really afraid he was going to kill himself. After another seizure, we had him transferred to the University of Virginia Neurology center, for a second opinion. The doctor increased his Keppra even more, and he went seizure free for around 8 months, and then had back to back seizures, after returning from a big weekend music festival. It was the first time his new (and sweet) girlfriend had ever seen him have a seizure. I think these seizures were due to his behavior at the music festival.
Well that was almost 2 years ago, and if he makes it till this July, he will be seizure free for 2 years. I am always crossing my fingers. Last spring he moved out, and moved in with his girlfriend. She is good for him, and he doesnt give her as much grief for reminding him to take his pills as he always did me. He is, and has always been very hardheaded. When he first went to UVA, he asked his Dr. was there any chance that he would ever be able to go off the pills, and the answer was, that he would only consider it if he had been seizure free for at least 2 years, and then he would have to be gradually weaned off. Oh, his dosage of Keppra is 3750 mg a day. Two horse pills in the a.m. , and three at night. He has to go back to the Dr. next week, and I know he is going to ask about going off his meds.
For the most part he has been doing much better, no seizures really helps alot. Last week he called me, and was worried that he might have had a seizure in his sleep. He said he didn't "feel" like he had had one,no soreness, etc., but he had a very vivid dream that he did, but it was a petit mal, not a grand mal. Now he is worried that he had one, but doesnt know if it was just a dream or a real seizure. He had worked a 18 hour day, and was exhausted, so I told him it was probably just from being so tired.
This forum has been really helpful to me. I have seen some good ideas, like that vitamin B6 helps with mood swings. I'm going to tell him about that, and ask the Dr. next week. Drew asked me to go with him.
Anyway, thats our story, for the most part. Sorry to drag it out so. I did leave some things out, if anyone has any questions. Thanks for reading, thanks for letting me read your comments, ideas, everything! mamacarol

[Nakamova]

Hi mamacarol, welcome to CWE!

It must be tough watching someone you love have a tonic-clonic seizure. I don't know how reassuring this is, but for the most part they look much scarier than they are. The aches and pains, and the post-seizure "hangover" are no fun whatsoever, but the actual convulsions happen while the person is unconscious, so there's happily no pain during the seizure and no memory of the event afterwards.

I realize you may not have any influence over your son at this point, but if possible you should encourage him to proceed with caution when deciding whether or not to taper off of the Keppra. The odds of success are mixed: The most definitive study found that 41% who slowly stopped treatment had a recurrence of seizures within two years (compared to 22% for patients who stayed on the meds). Another study compared the outcomes for 225 patients who chose to discontinue anti-epileptic drugs, versus 105 patients who chose to continue therapy. All had been seizure-free for at least two years. Overall, 50% of the patients who stopped medications had a seizure, versus 28% who remained on treatment. The relative risk was about 3 times greater for patients coming completely off medicines. The probability of being seizure-free was 88% at 6 months, 82% at 24 months, 80% at 36 months, and 68% at 60 months.

Certain factors are associated with a higher rate of relapse: Seizure onset late in life, seizures for more than three years, more than 30 total seizures, a family history of epilepsy, an abnormal EEG, and underlying ongoing structural or genetic causes for having seizures. If your son has a normal EEG during the taper process, or immediately after going completely off meds, that may be a reassuring sign.

If your son decides to taper, he should do so as slowly as possible (in low increments, spread out over 6 months). He should avoid driving for at least 3 months after being completely off meds. He should do everything possible to avoid any triggers or stresses that may lower his seizure threshold (fatigue, alcohol, low blood sugar, poor nutrition, etc.). Being proactive with his health and moderate in his lifestyle can't hurt, and may help in his quest to be medication- and seizure-free.

I wish you and him the best of luck with this. I hope to be medication-free someday, but in two prior attempts (with medical supervision), I haven't had success.