Results of 24-Hour EEG

Stuart's EEG was abnormal. I am told there was a lot of background spiking. The report says "spikes and slow waves". It also indicates they are coming from the left central-temporal region. An earlier EEG had showed activity coming from the front and right regions, so I'm not sure what it all means when put together. We have been referred to the Epilepsy Center at the Cleveland Clinic, which is about a 5-6 hour drive for us. Our doctor's office said they wouldn't do a lot of testing, that they may tinker with his medication. But the Clinic said he would be admitted to the hospital for about a week for intensive monitoring! The reason for that is to decide whether he needs a different medication, or if he might be a candidate for surgery. Brain surgery, yikes. Somes tests that were mentioned were neuropsychological, IQ, long-term video monitoring with medication removal to provoke seizures, and MRI. But the dates have not been scheduled - we expect to hear from them in the next week. It's really hard to not know when all this will happen. So many questions - where will I stay, who will take care of my other son, should my husband go, how long will we be there, how will Stuart keep up with school work?

What a 24-Hour Video EEG is Like

Our appointment was for 3 PM. When we got there, Stuart put on a button-down pajama shirt and stretchy shorts. Then he got on the bed and the nurse began to place the electrodes on his head. Each electrode is a a metal disk about 1/4" in diameter with a 3-ft-long coated wire attached. There were about 20 electrodes in all. They are attached to the scalp and forehead, right over the hair, with a strong-smelling glue and a little square of gauze. The glue is dried with an air gun, which sounds a lot like the air-sucking gun you see at the dentist. It was pretty loud, and might be scary for little kids. The worst part to Stuart was the Q-tip with cleaning fluid which was rubbed on the scalp first to pre-clean the spot; he said it was scratchy and hurt a little. After the electrodes were all on, the wires were bundled together with a cloth tube and attached to a 5x8" box. This box was connected to the computer by a long, heavy cord. The cord was about 15 feet long, which allowed him to pick up the box and carry it to the bathroom. There is a shoulder strap on the box so he could be "hands free". He also got and electrode or two on his chest for his heart.

Once he was hooked up, he was free to do what he wanted as long as he stayed on the bed. He enjoyed playing a Play Station video game, which we don't have at home. We brought DVD's and books, snacks and playing cards. My husband and other son came to visit around supper time, bringing me some food. (The hospital fed Stuart well, but not me.) I had a recliner to sit and sleep in. There was a refrigerator, microwave and coffee pot at the nurse's station. I also had access to pillows, blankets, and towels. Plenty of reading material and some needlework kept me busy, along with the TV on Closed Captioning once Stuart went to sleep. Neither of us slept well because of the nurse's TV out in the hall and the phone ringing and talking. The door was kept open, with the EEG read-out computer facing out into the hall so the nurse could monitor it. Also, we had to keep a light on Stuart so the video camera still could be used all night. The video camera and microphone were mounted on the cart that had the computer on it.

In the morning, Stuart watched TV and a movie and played solitaire with his cards. His least favorite aspect of the whole thing was having to ask for help to get out of bed, with the wires, to go to the bathroom. But he also really disliked the acetone that was used to dissolve the glue and get the electrodes out of his hair. Getting them off was a little faster than putting them on. His hair was a mess when we left the hospital about 1 PM the next day. They gave him a hat to wear, presumably to cover up the mess. Washing his hair when we got home didn't help much. I had to hold a nail polish remover-soaked cotton ball to the gluey places, and comb them with a fine-toothed comb. After that, it still looked like a terrible case of dandruff.!

In all, this was not a bad experience. It was a little stressful for him because of the discomfort of sleeping with wires, the limiting of his freedom, and the camera. But he had a good time playing games and missing school!

First Day of School

I hand-delivered to the school nurse today Stuart's medical form, emergency form and 2 Diastats (his emergency, prolonged-seizure medication). The school is so big, they wanted one for each level. The nurse is ready to give training to all the teachers and aids on seizure first aid and Diastat administration. Some of the teachers seem nervous about Diastat. I assured them that he has never needed it, so probably won't in the future. He probably won't even have a seizure at school. But I want them to know how to recognize one, and how to treat him when it's over. I don't want people to panic. The nurse seems quite gung-ho about getting everything set up for him - I think she enjoys the challenge. Much better than the one nurse in first grade who refused to even have Diastat in the school.

Another seizure

Stuart had another seizure last week. This one happened out in public. My husband went to get him and carried him home on his back. The doctor wants another blood level done. Maybe we will get it done when he's in the hopsital anyway in a few days for the 24-hour EEG.

Two Seizures

Stuart had two seizures with convulsions yesterday, which has never happened before. He had taken his medicine, so we don't have any idea about what caused that. One was at about 4 PM, the other at 7 PM. He was watching TV both times - he had been tired all day, and a little foggy, so I had been keeping an extra eye on him. I called the neurologist today; he recommended raising Stuart's dosage of Trileptal by 1/2 pill a day. How much more can we keep adding on? They told me that the blood levels he had done a couple of weeks ago were good. Who knows what that means. I'm really nervous now about letting him walk alone to and from the school bus in a couple of weeks. Wondering if I should drive, or walk, him to the bus, or just drive him to school.

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.