 My epilepsy story begins in 1995, when my son Tristen was in kindergarten.
"Epilepsy": we had never used that word before. We didn't know what it meant. I'm from the West Indies and in my family background, epilepsy was not something that we had any experience with.
I was pregnant with my daughter--my third and last child--at the time. The school called and told me that Tristen had "passed out". We took him to Toronto Sick Children's Hospital and they checked him over. After a while they told my husband and I that Tristen was fine, and we left the hospital. As we drove away, Tristen turned in my lap, his eyes rolling and his limbs flailing all over the place.
I began screaming! I had no idea what was happening to my son. My husband stopped the car in the middle of the road. We were both extremely upset and crying. My husband was in worse shape than me! We had no idea what was going on with Tristen. A lady came over to our stopped car. She looked at Tristen and very calmly said "He's having a seizure."
"A WHAT !?!" We were beside ourselves with emotion. The lady had to drive us back to the hospital. My husband needed a glass of water to calm down! Tristen spent the night in the hospital. The doctor explained what seizures are and gave Tristen an EEG test. The doctor assured me that my son's seizure had been an "isolated case"-- he probably wouldn't have one again. Tristen was not put on any medication. I took great comfort in the fact that the doctor said it wouldn't happen again.
Two years passed, and in 1997 our family went to Jamaica on vacation. Tristen was playing around with the other children when my eldest son came running to get me yelling "MOM, MOM!!" Tristen was having another seizure. Once again, I freaked out. The date was May 29, 1997. We took him to the hospital in Jamaica, then returned to Toronto three days later and took him back to Sick Kids Hospital. They pulled his medical record, and saw that his first EEG back in 1995 had shown abnormal results. The first doctor had been "mistaken" when he told us that Tristen probably wouldn't have another seizure-- apparently he spoke to us before the EEG results were available.
I questioned myself for a long time about why Tristen developed this problem. I don't drink or smoke -- was it something I ate while I was pregnant? I was panicked with worry and couldn't find any answer, any reason for it. What could have gone wrong? Tristen had a couple of seizures within two weeks of coming back from Jamaica. Then one night he asked to sleep in my bed. I was awakened by him making a gurgling sound and found him having a seizure beside me. I was shocked. The doctors hadn't told us that it could happen in his sleep, and I didn't know enough to ask. The times that Tristen was asleep had been the only times when I could take a deep breath and relax.
They put Tristen on Tegretol, 100 mg, twice a day. He went for 2 * months without having a seizure. Then he started to have a different type of seizure: he would suddenly run and hide under the table, look dreamy, and afterwards he would fall asleep. They increased his medication to 300 mg.
I went back to Sick Kids and insisted that I did not want him taking this medication any more-- it wasn't helping his seizures. That's when we met Dr.Logan. He said that Tegretol was not the medication for the kinds of seizures Tristen was having, and he switched him to Valproic Acid--Depekene-- in November, 1997.
When all this was first happening I was totally confused. I opened the phone book and started calling around, trying to get any information I could. Luckily I called the Epilepsy Association, Metro Toronto and Shanan Spencer-Brown, the Child and Youth Services Coordinator, picked up the phone.
I was so upset I could barely talk. Shanan was great. "That's what we're here for," she explained. Two days later I was in her office. I was still so physically sick talking about Tristen's disorder that I had to get up and go to the bathroom three times!!
Every time Tristen has a seizure I get really, really sick to my stomach - it's like I'm having this disorder along with him. Once I was even sick in the Ambulance on the way to Sick Kids! I don't eat for days.
Depekene is working very well. Tristen has had only two seizures since November of 1997. The latest was very recently, though-- May 29, 1999-- exactly two years to the day after the one he had while we were on vacation in Jamaica. I was on the lookout for a seizure that day, perhaps because it was an "anniversary" day. At 3:30 in the morning Tristen asked for juice, then at 4:30 he had a seizure which lasted for about two minutes.
The next day he asked me why he wasn't feeling very well. When I told him he'd had a seizure, he said "Oh God, not again. Don't joke with me!" The doctor said that I should take comfort from the fact that it had been one year and two months since his last seizure. Every day I live in fear that he will have another seizure. I know I'm a bit extreme. I watch his every move. I'm always running to see if he's O.K. When he's alone in the bathroom, I'm calling and checking on him constantly. If he's been quiet in there for awhile, sometimes he'll volunteer: "Mom, I'm O.K." I figure that I only have a couple more years before he will no longer let me monitor him so closely.
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I have two great fears. The first is that my daughter Keiana will develop epilepsy, too. I've learned from Shanan at the Epilepsy Association that this is rare, although not impossible. My second great fear is that something will happen to Tristen in his sleep. After I heard that the Olympic sprinter Flo Jo died from a seizure, I didn't sleep for a week. I watch Tristen constantly. I never get more than two or three hours sleep a night. To this day Tristen sleeps in my bedroom. I remember asking the doctor "Why couldn't he have had something else, like asthma?" But the doctor told me not to wish for that, that asthma is more dangerous.
I do try to let him have as normal a life as possible, but it's hard. Tristen doesn't go on any sleep-overs (except to his grandmother's house). I'm just scared he'll have a seizure in his sleep. And I worry that other people witnessing the seizure will get scared and I don't want to put them through that.
I let him go swimming, and biking with a helmet. But always supervised-- I don't even blink. Tristen is a fast runner and very active -- too active. I try to limit his physical activities because if he runs around too much he gets headaches, and we've been told he might develop migraines. He wants to be a basketball player -- even though he's only four foot two -- or else a doctor. I tell him that it will be a lot easier for him to become a doctor!!
Tristen is a very bright, very spunky child. He is the first one to tell you about his seizures. 'I take medication. I'm epileptic you know,' he announces proudly. To him there is no stigma to having epilepsy. He is a confident boy who does well at school and feels good about himself. He knows that he's not really different from the other children, except for the occasional seizure.
Shanan went to Tristen's school and explained everything to the teachers and principal. I also went into the school to help explain to the Grade 3 class what happens during a seizure, why it happens and how Tristen feels about it. The teacher even taught the class a drill to follow should Tristen have a seizure. Tristen liked all the attention-- he felt special. Now, on the playground, the children make sure that Tristen doesn't get hit in the head.
Epilepsy has changed our lives so much. We've had to make sacrifices that I never thought we'd have to make. When my job with the Ontario government was reorganized, I chose to stay home with Tristen because of his epilepsy. Epilepsy has also brought us closer. It has made me really listen, and pay close attention, to my children. And not take anything for granted. The whole family watches out for Tristen. My three-year-old daughter reminds him: "Make sure you eat, Tristen, or you'll have another seizure".
Everyday that goes by I get a little bit stronger. Once Tristen goes a couple of months with no seizures I will probably start to relax a little bit, just as I did during the time before his last seizure. Right now I'm ready to go back out to work and willing to leave Tristen in the hands of a trusted babysitter.
People from the West Indies, like everywhere else, hold different views about epilepsy. Some are negative, some are more positive. Some still believe that you should put a spoon in the mouth. They don't know. When you hear the word epilepsy you should stop and listen, even if it doesn't affect you now. It could happen to anybody.
The more you know about epilepsy the more you realize that it's not as bad as it seems. Back in 1995, I thought that epilepsy was very uncommon. That's because people don't talk about it. It seems scary if you are uninformed. People can say anything and you accept it.
Our family is very open about Tristen's epilepsy, which has helped a lot. I've learned that once you start talking about it, you hear about lots of cases in the community. Epilepsy is very common. The more questions you ask, the more you talk about it, the more you learn, the more you accept it and the less scary it becomes.
I am eager to talk to other people, especially people from the West Indian community, who have been through this. It's important that we reach out to one another and share our experiences. I believe there is strength in numbers. Don't you?
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