April 12, 1996
Today I woke up and I was on the floor. I felt incredibly sick, and the light bothered my eyes. I shut every light in the house off. I couldn't see very well, either, everything looked wavy, like if you need glasses and you go to the bathroom in the middle of the night without your glasses. The funny thing was, I don't need glasses. My Mom called my Dad to come home from work to take care of my brother, and took me to the hospital. I couldn't stop throwing up, even in the car. Luckily, I had a strong plastic bag with me.
When I got to the hospital, I got a whole bunch of tests. First they took a blood test, to see if I had swallowed any poison. Then about 6 different doctors examined me. They all thought I was a perfectly healthy kid, with nothing wrong. They couldn't figure anything out. Then I got a CAT scan to see if I had a head injury or brain tumor. The CAT scan machine is a narrow white tube, and you lay down in it and can't move. The test only goes on for a few minutes. The CAT scan machine takes x-rays of little slices of your brain. It uses just a little radiation, so it doesn't damage your brain. Everyone else has to leave the room while the machine is taking the x-rays. Since I was so little, the technician let me take my stuffed fox into the CAT scan machine with me. The technicians and my Mom could talk to me through a microphone from the glass control booth. It was kind of fun. Then they wheeled me back to the emergency room in a wheel chair, even though by then I felt fine.
Everyone kept talking about my seizure. I didn't know what 'seizure' meant. The doctors told my mom that I probably had a seizure because my blood sugar was low, but that she should bring me back for an EEG just to be sure.
April 24, 1996 I went back to the hospital and had an EEG. That's when they paste these little wires to your head and attach them to a machine to measure your brain waves. The technician measured my head, and marked my scalp with a grease pencil. Then she scrubbed the spots she marked with an itchy, rough paste so the
wires would stick. Then she stuck the wires to my head with big gobs of paste. It was very boring, and the paste was very itchy, and it was impossible to get out of my hair.
My brain waves were abnormal. That's how they found out I had epilepsy.
I was pretty scared when I first found out that I had epilepsy. My first question was could I still be a field biologist when I grow up, which was what I've wanted to do since I was 3. My mom told me "of course you can." When I heard that, I felt much more relieved.
May 16, 1996
I had a test called an MRA to look at the blood vessels in my brain. Some people with my type of epilepsy have abnormal blood vessels, either weak and ballooning ones (aneurysms) or tangled up ones (av malformations). I couldn't eat for the whole day of the test because the doctors were planning on putting me to sleep so I would stay totally still, because the MRA takes a long time to do. The MRI machine kept breaking down, and I got put into it 3 times and they started the test, and the machine wouldn't work again, so they had to take me out again, and I had to wait an hour or two for them to try to fix it again. Finally, the machine broke down too many times, so I had to wait until another one was freed up, so I could have my MRA in another machine. I laid down on a little cot-like thing, and they taped down my head so I would not move, and then the cot moved into the machine. It looked like a white tunnel inside. The noise was terrible, it was booming right in my ear. So annoying, and it gave me a headache. They gave me earplugs, but they didn't help much. It was very hard for me to stay still, and the pictures did not come out really well. Finally, I fell asleep in the MRI machine, and they did the test again. By the time I was done, I had been at the hospital 8 hours. When I got home, my brother was worried about me, and he asked me if they found anything terrible. The MRI and MRA showed that my brain and it's blood vessels were perfectly normal.
A year later, I went to Camp Eagr, a special sleep away camp for kids with epilepsy. We had to drive for 13 hours to get there, including a few stops to eat, and driver changes from my Mom to my Mom's friend. I had a fun time. It wasn't much different from other camps but we had to go to the Medical Lodge for medication to control our seizures at certain times of the day, only if you needed it of course. I didn't have to go, because I wasn't taking medication yet at that time. We had a bunch of the same activities, we would go swimming, wall climbing, have arts and crafts, sports, and horseback riding. I hated canoeing, and I loved wall climbing because I'm a daredevil- I like anything that's dangerous. It wasn't too dangerous, because you were on a safety rope. We only got to do the wall climb once. We only had a week of camp, because the Epilepsy Foundation rented a YMCA camp for a week. The rest of the summer, it was a Y camp. It also was a good feeling to know that millions of other kids had epilepsy too, and that I wasn't the only one. Before camp, I didn't know any other kids with epilepsy.
August 23, 1997
Right after camp, I was having a lot of seizures, so I had to start on medication. It was kind of annoying at first, but I got used to swallowing pills. I started on Tegretol XR®, it was a special medicine that would release the medicine over time so you didn't get it all at once. It's scientific name is carbamazepine. One pill lasted half the day. The carbamazepine made me feel sick, but I had to take it or I would have had a lot of seizures every day. It made me feel wobbly, and made my stomach and my head hurt. When I got too high of a dose, my food wouldn't stay in my stomach.
The worst thing about taking medicine is that I had to have blood tests every month at first, and then every three months. The blood tests were to see if the medicine was causing any trouble with my liver or my bone marrow, the part of the body that makes blood cells. I hated blood tests. They stunk. But there was a nice nurse named Beth who was always gentle. One day Beth was transferred, and I was very sad. The next nurse was gentle, but not as gentle as Beth was. Beth always waited until I was ready so I wouldn't be startled or scared when the needle hit me. I always knew when I was going to get stuck, because she would ask me if I was ready. Then she asked me what kind of Band-Aid I wanted. She would always ask me if I wanted a Barney one, even though she knew I was going to say no. I think it was supposed to be some kind of a joke!
The local Epilepsy Foundation's community education director came to my classroom to do a puppet show to teach my class about epilepsy. She used two life sized puppets to tell a story about a boy with epilepsy. Then she picked a couple of kids to do a skit with "Captain Seizure" about how to help someone who is having a seizure. When the program was over, I told some of my classmates that I had epilepsy and they didn't believe me. They thought I was just saying so because I wanted to be cool!
I had to have a 2 day EEG because my mom was worried about the medicine not helping, and me not being able to fall asleep at night. First we went to the lab and I got the little wires attached to my head. Then I got it all wrapped up in gauze. They attached the wires to a little machine that went around my waist in a fanny pack. They also gave up a computer that plugged into the fanny pack and into the wall. The machine in the fanny pack would run by itself, but only for a little while, I used that when I was walking around and when I was outside. I plugged it into the computer when I was laying down, sitting, or doing something that did not involve moving around. I could walk short distances when the computer was plugged into the wall, but not far. The computer monitored my seizure activity and my brain waves. I also had a little button to push when I was seeing spots, to see when I was having most of my seizures. The button caused a mark to be made on the recording, so the doctor could pay special attention to that area. On Sunday when I could finally take it off, it took hours to get all the gook out of my hair. We had to use solvents to get the paste off. I was happy to get the electrode paste off because it was very itchy, and some was on my forehead and arms and chest. The ones on my chest and arms checked the electrical activity of my heart (EKG).
My doctors learned that I had most of my seizure activity when I was sleeping, and it was spreading all through the back of my brain.
I entered a contest for kids with Epilepsy to be a winning kid. I won the local contest and got to go to a fancy dinner. I got to help at the golf tournament fundraiser, and on the phonathon. I had a good time getting to know the people who help those with epilepsy in our community.
I'm off to Camp Eagr again but this time my brother is coming too. It was better then the last time I went because even though we weren't allowed to eat junk food in the cabin the counselors of my cabin let us keep junk food in the cabin anyway. On the first day I gave the counselors and other kids in my cabin a quiz because the teacher I had the previous year had my class do a lot of research. I also had more friends this year then last year. I had a great time.
I'm off to camp again but this time I'm going to Camp Hemlocks because this camp is free and it is a lot closer to my house. This camp was better then the last because this camp actually has indoor plumbing in the cabins and junk food is allowed. The bad part is I only got to go swimming twice the whole time. At camp we has a contest were you have to dress up an egg so it won't break when you throw it up in the air on Monday, a camp out in the woods on Tuesday, a dance on Wednesday night, and a treasure hunt on Thursday. We also had daily activities. Best of all, I made it to the top of the climbing wall. I loved it!
November 22, 1999
I started to try a new medicine because the carbamazepine made me feel sick. I tried Lamictal®. It's scientific name is lamotrigine. When you're on lamotrigine, you have to start it very slowly and on a low dose, because if you take too much when you are just starting, it can give you a horrible rash. It was working just fine until I started to take three pills (75 mg) in the morning and at bedtime. That night, I started to get really, really itchy. I couldn't sleep, it was itching so much, nothing could help. My body looked like a big giant mosquito bite. Even the inside of my mouth was all red, it was even down my throat! Then I had to stop the lamotrigine right away, before the rash got too severe. I had to go to the hospital so the doctors could make sure the rash was from the lamotrigine. The only good thing about that day is I got to stay home from school. It took more than 3 weeks for the rash to go away, and it was itchy the whole time. My throat was killing me, my mouth was sore. A doctor at the hospital suggested to try lamictal again, but increase the dose more slowly. I didn't like that idea AT ALL. What if I got the rash again? Besides, the half pills were very, very annoying because they tasted so bad, and I didn't want to go through that again. Luckily, my doctor didn't want me to try lamotrigine again. So I ended up in the same place I started, back with the carbamazepine.
December 13, 1999
One day I forgot to take my morning pill and the result was not very good. A couple of days later, in the middle of the night I had a seizure. I woke up in the middle of the night, and none of my stuffed animals were where they were when I went to sleep, my tongue felt like I bit it, and I felt really dizzy. My brother's light fell on the floor, and the light bulb shattered. I thought I must have had a seizure and shaken our bunk bed so hard that his reading light fell off the bed.
That day, I got to stay home from school because I was feeling really sick, and I had to go see the doctor in the afternoon anyway. Luckily I did not have a seizure another day instead of on that day because I had a neurologist (epilepsy doctors) appointment that same day for a checkup . Dr. Morrell (my neurologist) made sure I really had a seizure instead of something else and gave me my checkup. After that I went home . After that I made sure I took my medicine.
March 20, 2000
I went to the doctor for a visit today. She suggested I try a new medication for my
seizures. She gave me some sample pills of oxcarbazepine. It's like carbamazepine,
but it does not have as many side effects as carbamazepine.
March 30, 2000
This will be my last entry in this diary . Even though you could conclude that epilepsy is hard I still have a normal life . I'm in a gifted program at school and have a lot of good friends that don't have epilepsy . I'm good at crafts and at writing stories and I can do everything any other kid can do but I have to be more careful around water and high places, that's all.
Diary by Alyssa Genna age ten.
May 17, 2000
I gave the oxcarbazepine (Trileptal®) a try and it made me feel very groggy and drowsy all day, and often made me nauseous. The doctor decided to put me on a new drug that just came out, called Keppra®. Keppra made me feel so sick I could barely get out of bed. I felt very nauseous and had a horrible headache. Every day is the same- wake up, feel horrible, get out of bed at 1 p.m. and lounge around on the sofa! I hope I feel better when I get used to this medicine.
June 10, 2000
I have not been able to get out of bed for three days now. My mother called my doctor, and the doctor said I must be "toxic" on the Keppra®. Toxic is when you are having too much of something in your body and it starts to act as a poison. The doctor said I should only take half as many pills. That helped a little.
July 31, 2000
I went to my neurologist (epilepsy doctor) today. They finally decided to put me on a different medication, because the Keppra® is making me feel so sick. We decided to try Neurontin® (gabapentin). I was so glad to be able to get off Keppra®. I wanted to stop taking Keppra® right away, but they made me stay on it until I got up to the full dose of neurontin.
August 13, 2000
I'm so excited! Today is the first day of camp. I'm going back to camp EAGR for the third time. It was just like I remembered. Swimming, archery, horseback riding, campfires. It was so great to be with other kids with epilepsy. Everyone there understood what it's like to have seizures and have to take medicine, because they either had epilepsy or had a sibling with it.
August 26, 2000
Neurontin® has been helping me. I can't go too high on the dose or it makes me feel sick. If I stay on a low dose, I feel fine and my seizures are even going away! Everything is great, I hope it stays that way.
Neurontin® stopped working, and made me feel incredibly sick, so my mom and my neurologist agreed that I should try something new. The new thing was zonegran® (zonisamide) which is very new and just recently FDA approved in the US. So far it is working well, and I feel a little better than when I was on Neurontin®. I hope it will keep working.
May 2, 2001
I had to drag myself around all the time, and on the weekends I couldn't even move because I was so exhausted from dragging myself to school during the week, so we decided to try going off meds totally. Dr. Morrell gave me a prescription for Diastat®, which is an emergency medication to stop status or cluster seizures. She wants me to get a new EEG in 6 weeks to make sure it is safe to stay off meds. I hope I do okay without the medication.
May 28, 2001
Two days ago when we were shopping for a prom outfit I found a locket at Macy's. Me and my mom were thinking of getting a locket anyway, so we could put instructions inside about what to do if I have a seizure. It is beautiful. I decided to buy it with the gift certificate I was given by my Godfather for Christmas. I haven't had any seizures, just one migraine headache.
June 15, 2001
Today is the day of my elementary school senior trip. The Assistant Principal would not allow me to go unless my Dad could go to. At least the school paid for his ticket. We went to Medieval Times, a dinner theatre in New Jersey. I bought four little pewter statues and a little circlet to wear on my hair. I had so much fun. At the end, the knight who wins the joust gets to pick a Queen of Love and Beauty from his section of the arena, who usually is a young girl. I was very excited when our knight won and my friend Lucilla got picked as the Queen! I was so happy for her.
June 20, 2001
Today I went back to the hospital for my EEG and my doctor decided I had to go back on meds. I was very happy being off them, and did not wish to go back on, but I had little choice in this matter. I am going to go on Depakote®.
July 17, 2001
I spent 10 days at Audubon camp in Vermont. It was great fun. We camped on platform tents, and we had to brush our teeth using water from a huge gatorade® jug that was refilled every morning. I was the only one who got to rinse my mouth out, because I had a cup to take my meds with! Who says there aren't any pros to having epilepsy- even if they're small! But there was something there that bothered me - we had a "Doctor in the Woods" optional course that I took. One kid was supposed to be panicking, and it looked like some freaky seizure. After the class, some kids were telling the kid that it looked like a seizure, not like he was panicking. When I said it wasn't really like a real seizure, they asked how did I know. I answered "I have epilepsy, that's a seizure disorder." One kid who thought he knew about epilepsy said "You can't have epilepsy, you would have been dead already" (he thought that if you had a seizure, it killed you). All the boys believed him over me, except for one (the girls saw me take my medication at the tent, and knew what it was for, since most of them has asked me before).
I was going to a summer school program at Townsend Harris High School - a review course to take the New York City specialized Science High Schools entrance exam (for Stuyvesant, Bronx Science, and Brooklyn Tech.) But I already knew everything and it was getting really boring, and I felt really lousy from my new meds and really needed some time to rest over the summer. So my mom let me quit. They seemed relieved to get rid of me, because they were afraid that I would have a seizure in class. That made me feel a little annoyed, that people know so little about epilepsy that they are so afraid.
August 15, 2001
A little while ago, my mom found out that when I was taking Neurontin® that the pharmacy accidently mixed up some other pills into my prescription. She asked me if I wanted to try Neurontin® again. Depakote was making me way too dehydrated, and it also made me so hungry that I gained 20 pounds in 3 weeks! Similar weight gains happen to a lot of people who take this med. So I wanted to get off the Depakote®. I hope Neurontin® will be better.
September 1, 2001
I got a new Medical alert bracelet because I am going to Junior High School and I'm going to be travelling on the city bus. (Because of this my mother is going to blow a worry wart!) It is really pretty, with silver, black, pink and white fresh water pearls. My mom ordered it from an Internet company called Special Creations. I am very excited about Junior High.
I just recently participated in the Epilepsy Foundation of Long Island Walkathon with my whole family. I was the last person to finish, because I was walking with my friend Laura who just had brain surgery a few months ago for her epilepsy. She was partially paralyzed after the surgery, and was supposed to be using a wheelchair for long distances. But she walked the whole 5 kilometers! She got a special award for her bravery. My family got an award for raising one of the top 3 totals of money. It was really neat to give something back to the Epilepsy Foundation of Long Island after all they have done for me.
January 5, 2001
Neurontin® was making me have really bad headaches, and wasn't controlling my seizures well, so I tried Topomax®, which wasn't quite right either. But I remembered that I has a lot of energy and felt really good while I was weaning onto Topamax® and off of Neurontin®. When I went back on a combination of those two drugs I wasn't feeling as good as I did before. This could have been for one of two reasons: Topamax® induces it's own metabolism, so it could have been being metabolized differently after awhile; or it could have been a "honeymoon period" which is when the first few weeks on a new drug it works better than it will later on. I have decided to stay on these two drugs, because I have tried about everything else for my type of epilepsy (except Dilantin®, which can have cosmetic side effects and can make you really tired), and even though I am absent-minded and sleepy on them, I can still function. Topamax® also is making me finally lose all the weight I gained on Depakote®. I've already lost 10 pounds. I'm also growing some hair back which I lost while I was on Neurontin® alone. I actually had a little bald spot in the front, and now it is growing back.
I can't believe I was excited about going to Junior High. It totally sucks. It's so boring. In elementary school I was in a special program for gifted children, so we got to do interesting things. But now in Junior High School, I'm in SP, which is just more work, more tests and less fun. It is also a problem for me, because I have very little energy, and it is hard for me to get from one classroom to another in the time period we have to change classes. I have already gotten the reputation for being stupid, because the kids in my class do not understand what my disabilities do to me, and that I am just tired and absent minded from my meds. Sometimes I get really tired in class and have to try really hard to stay awake and pay attention. But I manage.