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STORIES: John's Story / Glenn's Story / Gabrielle's Story
How epilepsy has affected our life. Three years ago, on a Tuesday, our oldest daughter Gabrielle, age 8 then, had a viral illness that had infected several kids in her class. She missed several days of school but seemed to recover without problems and was able to catch up on all her school work. On Saturday, she became lethargic which we attributed to just getting over her illness. That night because I was out of town for a meeting Gabrielle slept in bed with her mother. My wife was awakened a 1:00 am to my daughter having a generalized seizure. This was completely unnerving to my wife to see her daughter shaking violently then stop breathing and turn blue. My in-laws were staying with her since I was out of town. My father in law performed CPR while they waited for the ambulance. My wife called at 3:00 am to tell me what had happened and that Gabrielle was being flown to Arkansas Children’s Hospital. I arrived at ACH just after my wife to find Gabrielle in the PICU unconscious. After a half day of testing, it was felt she had viral encephalitis. Late that afternoon, Gabrielle began to wake up and we became more comfortable. Unfortunately, things only became worse. She began having seizures again. They were unable to be controlled until Gabrielle was placed into a medically induced coma and intubated. After 4 days, she was awakened but the seizures returned and increased in frequency and severity. She had to be placed back into a coma for 5 more days. She was awakened again to what seemed better results and control with antiepileptic medicines. After 8 weeks at ACH, she was discharged and sent home. For one month after leaving ACH, Gabrielle was seizure free. Her neurologist thought it would be safe to start weaning her from one of the meds she was one. The seizures returned. Her medications were increased back to the discharge dose but the seizures continued. They usually occurred for several days in a row. Her neurologist would either increase her current meds or add a new drug. We would think we had control until the seizures returned several weeks later. Her meds were continued to be increased until she was maxed out on doses of 3 different medications. During these several months her mother and grandmother, who had moved in with us to help, were trying to reeducate Gabrielle on all she had forgotten because of her illness. Needless to say this was very difficult because of the medicines she was taking. In trying to obtain control of the seizures, she was treated with 8 different medicines, none with any better control and some with severe side affects including acute psychosis and encephalopathy. We even started taking Gabrielle to a pediatric neurologist in Dallas, TX. She was tested for a week in Dallas to see if surgery would be an option. Unfortunately, her seizures come from multiple focuses on both sides of her brain. Two years after her first seizure, Gabrielle had a Vagal Nerve Stimulator placed. The VNS has helped but Gabrielle still has seizures. She still is on three medications (Trileptal, Keppra and Phenobarbital). She is currently 11 years old and it seems her seizures are related to hormone imbalances known as catamenial epilepsy. Her neurologist has started Gabrielle on a birth control pill. We are hopeful with time we can completely control her seizures.
At the beginning of this story I wrote “our life”. Gabrielle’s epilepsy has affected all in our family. My wife has stopped working. It wasn’t fair to her employer, an accountant, to rely on my wife to help with clients. When Gabrielle has a seizure she is usually out for 2 to 4 hours after. Her seizures all occur during the day. She has had to come home early from school many times after having a seizure. When she has seizures, they usually last 3 to 4 days and she can have up to 4 in a day. My wife’s mother has moved in with us during the school week to help. Because Gabrielle had encephalitis this has affected her ability to learn. Then when you add the multiple medications she has to take and their side effects, school work has become difficult and time consuming. Gabrielle requires one on one attention to complete her school work and home work. My mother in law retired early to help with things at our house. Gabrielle has a brother and sister who have also been affected. Their time with mother is taken away by Gabrielle’s seizures and needs with her home work. During the summers they may not make it to the swimming pool if Gabrielle is having seizures that day.
Epilepsy not only affects the individual but their family and the community they interact with on a daily basis. For the last three years we have been our own support group. We live in El Dorado, AR. At one time there was a support group but only a nurse and we would attend the meetings. My wife has become my daughter’s best advocate. She goes to the school each year to educate the teachers my daughter will have on how to take care of her during a seizure. So far this has been easy since the school my daughter attends is the same one she has attended for the last 5 years. They knew Gabrielle before she became sick and continued to watch out for her since becoming sick. Our concerns are for next year when she switches schools. We are glad to find an organization like PEACE and look forward to becoming involved and meeting others with similar stories. May another moment not be lost to seizures.
- Gabrielle’s father, Ken Gati |
Gabrielle |
