24-Hour EEG Recommended to Us

We went to the neurologist this morning, but only saw the new PA. We told her about Stuart feeling "seizur-ish", as he says, so often lately. He describes it as his brain being "nauseous". The PA recommended that we get a 24-hour video EEG to see if he is having tiny, unobservable seizures to cause his feeling bad so often. I wonder if it's not the amount of medication he's taken. He had drug levels done in May, which were okay. But since his dose has been raised twice since then, they want us to do it again soon. I also wonder, if he is having little seizures we don't notice, what good will it be to know that? The medicine won't change, will it?

Apparently, the first available slot for the EEG is August 27. School will be back in by then - it will be in the middle of the first week of school. He will be going to a new school this year, and I hate to see him miss some of the first days. On the other hand, not too much is happening the first few days of school, so maybe it's not such a bad time. I'll have to pick him up early on Wednesday, then he can go back on Friday, provided he's not too tired.

We've not had a 24-hour EEG, so I'll add that experience to the blog when we're done. I assume it's an inpatient thing, particularly since video is involved. I don't know whether they will try to induce a seizure, but I would think not since they are supposed to be looking for small ones that we don't really see. I guess I will be the one to stay overnight with him. How easy or hard will it be for an 11-year-old boy to be "tied up" on some wires all day and night? We'll see.

I asked today about the awful nausea Stuart has after a seizure. They suggested a suppository to give him that I can't remember the name of. They don't particularly want him to take it though, unless it's really bad, because it makes one groggy and this can be confused for more seizures or seizure problems. Seems like nothing is simple or easy.

This Week

Stuart was exhausted when he got home from camp, so we let him rest plenty. A few days after he got home, he had three siezures in one day! This is something that has not happened before - and they were different than in the past. These involved just staring and head-turning, and confusion and sleepiness afterward. They were unusually short, less than 30 seconds. The first happened at the library, where I was able to steer him to a couch. The second happened at the pediatrician's office, where he had gone to have his twisted ankle (from camp) looked at.

So now I'm more nervous than usual. Everytime he drops something, or makes a strange sound (like 11-year-old boys are wont to do), I have to check him. All of us are on a bit of high alert for him. I notice this in his older brother, too, and wonder what effect it has on him. The neurologist (Dr. T) has raised his Keppra dosage again, and wants to see him next week. I wonder what he will do, or ask us. What good will it do to see us? To order more tests?

Scout Camp

Boy was this a scary decision. If Stuart misses even one dose, he can have a seizure. If he doesn't sleep enough, his threshold is lowered. (And we all know how much sleeping goes on at camp!) In the end, we decided to let him go, but told him not to swim in the lake. Two nights before he was to leave, he had another seizure. This one scared him badly because he was aware for the first several seconds. He felt his head turning and his eyes fluttering and couldn't do anything about it. Also, he couldn't see. Then he went unconscious and had convulsions as usual. This one was caused by forgetting his medicine that morning (it was in the evening). Mostly, he has no triggers, and this is one we live in fear of. It's so easy to forget his medicine! Anyway, he did go to camp, remembered his medicine, and was seizure-free that week.

This Past Year

Things have gotten a little more dicey this past year, starting when Stuart had his first seizure in public in October. He was on a school field trip, an outdoor event. An ambulance was called - lots of hubbub. Quite upsetting for his little 5th-grade friends. Anyway, he had two more in the following weeks - more than we had ever seen so close together. He went in for blood levels and another EEG. The levels were fine and the EEG showed the same abnormalities as the one from 5 years ago. The neurologist told us that we might expect him to have more seizures as he approaches puberty, due to chemical changes in the body.

In May, he had a seizure in an office chair while playing on the computer. When he fell sideways and began to convulse, he got his head caught between the back of the chair and the arm. This freaked out his older brother (14) a good bit. He ended up with petichiae bruises in and around his eyes. Fortunately, his neck wasn't hurt, but this gives you a good idea of what kind of crazy things can happen when seizures come out of the middle of nowhere, and no one is looking at you right at that moment. After his seizures, Stuart can't talk, even thought he can hear and understand us. He needs to sleep, which will help to lessen the headache and nausea he gets after each one.

Then there were two more seizures in June. Most times, the doctor will raise his medication dosage.

Over the Years

Over the years, Stuart has progressed to taking 1200 mg of Trileptal a day, and 3000 mg of Keppra a day. I worry about his taking so many drugs, but worry more about the dangers of more seizures. He is plenty smart, and is in the Gifted Program at school. But he tends to think, react, and speak kind of slowly, and I have to wonder if the medication slows him down. He is in speech therapy for his "disfluency".

Introduction

I thought I might share some of my experiences having a son with epilepsy. Stuart is 11 years old. He had his first seizure at about 6 1/2 years old. I found him that afternoon lying in the street in front of our house, unconscious, with his eyes rolled over to the right side. I thought he'd been hit by a car, but there was no blood! After a CAT scan and and EEG, he was put on Trileptal. Things were fine for about a year, when he had another seizure. He has had a few a year, on and off, since. The longest he has gone seizure-free is 1 1/2 years. His seizures are complex partial seizures, which involve loss of consciousness, head and eyes turning to the right. After a few years, he also began having convulsions - not something a parent ever wants to see! On one occasion, he lost bladder and bowel control, but fortunately that hasn't happened again. All seizures up until last fall happened at home, so we didn't have to deal with the trauma of having one at school.