It was early morning almost seven years ago when Bronte had her first grand mal seizure at my mother's house. Needless to say, we were terrified. We had no idea of what was happening to her. We raced her to the hospital. I was driving, tears streaming down my face, my mother holding Bronte, talking to her, trying to stay calm. We were living a nightmare. It took a lifetime getting to that hospital. She was diagnosed with epilepsy in January of 1994 and was placed on Phenobarbital.
At the tender age of five months, my daughter, Bronte Alexis, was having practically every kind of seizure, grand mal, absence - you name it. Sometimes she would stiffen up, other times she would suddenly drop her bottle from her hands.
Unfortunately, her small, growing body didn't respond well to the medication. It made her very hyper and she couldn't sleep at night. The only way I could get her to sleep was to let her sleep on my chest. She seized constantly throughout the night and mommy's chest was her only comfort place. Bronte also had constant colds because of her fragile immune system. During the winter I had to sleep sitting straight up in bed so she could breathe. My daughter slept on my chest for four years.
When Bronte was two and a half years old, she went through a two month spell where she had 10 grand mal seizures a day. A new doctor took her off Phenobarbital and started her on Depakote. He diagnosed Bronte with Lennox-Gastaut Syndrome, a severe form of epilepsy. Her childhood would be characterized by frequent, hard-to-control seizures and mental impairment. We were told Bronte might never talk.
We decided to try the ketogenic diet to help control her seizures. After the very first day, Bronte's seizures stopped completely. But the diet dehydrated her, so she was always in the hospital. Every night after dinner she would just cry and cry because she wanted something else to eat.
After two years she seemed to be doing well on the diet, and we hoped we could wean her off the Depakote. We started taking her off the medication and she immediately started seizing constantly. I thought it was too much to have Bronte on both the ketogenic diet and so much medication, so we took her off the diet and the doctor put her back on Depakote.
Bronte had grown into a beautiful five-year-old. She was having fewer seizures, but she still had absence seizures about every hour. We needed something to control them. We flew from our home in Sacramento, Calif. to see a doctor in Minneapolis who referred us to a doctor at Stanford University. The doctor added Lamictal to Bronte's cocktail, which did decrease her "absence" seizures.
Besides the constant dehydration, I think the ketorgenic diet had another side effect on Bronte; she went through a "food thing." She wouldn't eat anything. She went month's and months just eating rice. She was shaky and fell down a lot because she was so weak.
When Bronte was six years old, everything started again. The grand mal seizures were back and she started getting sick again - high fevers, vomiting and lost motor control. She would be sick and in bed for weeks at a time. From September 1999 to May 2000, she was in school for two weeks, then home for two weeks. It was a terrible cycle.
The doctor added Topamax to Bronte's medications to control the grand mal seizures. She lost her appetite after that and started to starve herself. The only thing I could feed her was Pediasure.
Bronte's health is only one of the battles we've fought with her. We've had to fight for her to get the education she needs. Bronte entered the school system when she was three years old. She was in a special education class and had an Individualized Education Plan (IEP) for three years. Yet as she was nearing kindergarten, she hadn't achieved any of her goals and hadn't learned one new skill. She desperately needed an aide in school. I knew my daughter could learn. It had taken us five weeks to learn on task at home, but she could do it. She was such a quiet little girl and I believed she was just being overlooked in the classroom.
The school district was a constant battle. Despite many IEP meetings and four doctor's reports indicating Bronte's need for an aide, the school district wouldn't provide one for her. Several neuro-psychological evaluations were performed on Bronte, and my mother and I spent hours on the phone trying to convince the school district that Bronte needed an aide. We finally won the fight and Bronte got an aide in her kindergarten class.
We believe that more research into a cure for epilepsy is the only hope for Bronte, and for others whose days are filled with seizures. Now Bronte's seizures are a part of our lives, but we hope that one day that won't be the case.
My daughter is such a special girl. She loves to rub faces and hug other people. She has been through so much but she keeps fighting, and we keep fighting for her.