Parenting an Epileptic Child: Our Story

It can be difficult learning to accept a diagnosis of a disorder such as epilepsy, especially when it invloves a child. This is the story of how we learned to get past a label and embraced raising our special boy.

I will never forget that phone call, the moment is frozen in my mind. It was the pediatrician, the doctor himself, and not the nurse. “The nurse always calls with test results,” I thought to myself, “this is not good.”

“Well,” he said, “it looks like the EEG is showing some seizures.” I tried to wrap my mind around the concept. I knew nothing of seizures at the time, had known only a few epileptics and, though I knew what to do for someone during a seizure, I was unable to grasp the concept that my child had this terrible disorder.

“Is it epilepsy?” I asked, feeling like an idiot, like I should know more on the subject somehow.

“Yes,” he said, hesitating a bit. “We need to start him on tegretol…” And that was the beginning. Little did I know just how much our lives would now change.

It had started about six months earlier, when our perfect little boy, then about two years old, suddenly started speaking less and losing words in his vocabulary. I was pregnant at the time with our second son, so we thought for a while it might be jealousy. It eventually became apparent that this was not the case. As we began evaluations to get him into speech therapy, his preschool teacher noticed him staring oddly, then resuming his activity. It was recommended we have him evaluated for seizures.

Ridiculous as I thought it was at the time, we agreed and began the process, seeing the neurologist a few weeks later. He asked all the right questions, honing in on exactly what was wrong. As we walked to the parking lot, I looked at my husband, Ron, and said, “He knows exactly what is going on with Rob. He just cannot say without the right tests.” About a week later, we prepared for the EEG: keeping Robbie up all night so he would sleep the next morning. Little did we know at the time that this would become a yearly ritual.

The EEG went smoothly, the tech did not believe he saw any seizures, “But the doctor will need to review the tape,” he told us. Just being official, I thought at the time, nothing to worry about. But then that call came. It was seizures, and a lot of them.

Rob was having absence seizures, once called petit mal. He would stare off into space for a few seconds and then pick-up and carry on as if nothing had happened. As often as he was doing this, perhaps hundreds of times a day, he was missing out on important stimuli. Our pediatrician once described it as flipping channels on the TV, never getting to watch an entire show and not being able to know what is going on around him. We noticed some odd behaviors starting, repetitious actions, as to be able to make his world predictable so when he “ checked out” he would be able to deal with his surroundings when he came back. He withdrew socially and started having tantrums more often. This is not uncommon in children who have communication disorders. It becomes very frustrating to try to get across the simplest need or want, and they act out of that frustration. Robbie had lost his speech, perhaps because his brain was trying to deal with the world checking out every few minutes. We had thought of Landau Kleffner Syndrome, another seizure disorder, as his symptoms were almost classic for it. His seizure type and location of the seizures did not fit the profile, however, so this was ruled out.

For months, we went to the doctor every few weeks to measure Robbie’s medication levels and make sure that his liver function was not being affected by his meds. As his medication began to work, it became every few months. He started a preschool program for special needs children and began to receive intense speech therapy. In the mean time, I began to pour over every book I could find on the subject, I researched epilepsy as best I could at the local library. Not having the advantage of the Internet at the time, my library was limited, but I was able to find out about epilepsy and absence seizures.Along with the technical aspects of epilepsy, I learned much more from Robbie himself. First, I learned to treat him like any other child. If a child is never pushed a little, there will be no need from him or her to try to improve. I also learned, no matter what the “experts” say, don’t give up hope. A child’s value is not dictated by IQ, there is much more and every child has potential. Mostly, I learned patience. Not with Robbie, per se, but with epilepsy. Nothing will work overnight, the brain and body need time to heal and grow. All we can do is make sure the child get the therapy and medicine that is needed, and sit back and wait.

We have been very lucky. Robbie’s seizures were very easily controlled with tegretol and, after three years of drug therapy, we were able to successfully wean him from his medication. He still is behind in speech and some learning issues, almost exactly two years behind, as if he had to start all over again when the seizures began. I still worry, I think I always will. Will he fall sometime, bump his head, and begin having seizures again? Will hormones during puberty bring them on again? Only time will answer these questions, in the mean time, I do not let these thoughts consume me. I do mourn a bit for the carefree childhood he has lost, but I really think what he has had to endure will make him stronger. I have gone on to share our experiences, as I am doing now, to help others realize they are not alone, as I once felt.

And Robbie? Well, I am not sure he really understands what has happened to him, but I know he does realize he is different somehow. He is growing more social again and the odd behaviors we once saw are fading. I hope one day to have a normally functioning son. Though his IQ tests out quite low, I know he is a bright boy, and, more importantly, a sweet and loving child without a mean bone in his body (though I doubt his little brothers would agree). And he is still our perfect little boy.

Parenting a child with epilepsy, whether the child has developmental problems or not, means having to accept the child for what he or she is and loving them unconditionally. It means accepting life in and out of doctor’s offices, clinics, and hospitals. Rejoice in small steps and don’t let the setbacks discourage you. In the end, all that can be seen is a wonderful gift of a child.

Tags: , ,

Comments are closed.