Epilepsy: A Parents Voyage with a Child

Imagine driving down the road and having your then, nine year old daughter complaining that her foot has gone to sleep. I imagine most people would think nothing of it, nor did I. We continued down the road to our destination, thinking that once we arrive and she starts walking around the foot will wake up.

Other than running very high unexplained fevers as a baby up to about two years of age, this child of mine has been perfectly healthy. So when she starts saying her foot is asleep, it sets off no alarms.

At our destination, she continues to try to walk off the sleeping foot. But the numbness continues. We still aren't alarmed.

Then the condition changes dramatically and quickly. She is standing and kicking the foot at this point in frustration that it will not wake up. All of the sudden her one arm seems to take control of itself and starts trembling and shaking, pulling itself towards the body. Now she screams out for help. Everyone rushes towards her. Realizing that she is in serious trouble, they help her to the floor. By now she is convulsing over her whole body. With her eyes rolled back and saliva drooling from her mouth, she is having, what we later learned to be, a grand mal seizure.

Upon getting her to the hospital and while in the emergency room, she has two more grand mal seizures. The neurologist on call orders up a C.A.T. scan.

A large mass is found in the brain. The neurologist is diagnosing a large tumor and predicting it is probably cancer. His recommendation is to send her to Motts Children's Hospital in Ann Arbor, Michigan and that brain surgery is the only alternative. My daughter is placed on Phenobarbital to control the seizures until we can get her there.

Imagine the shock and the horror my husband and I are going through. This beautiful little girl is going to have her head shaved and her head cut open.

We meet with the doctors and have a consultation on what is going to take place. My daughter is once again given a C.A.T. scan and surgery is scheduled for the following morning.

As fate would have it an emergency surgery came in and they had to bump my daughter's surgery. While the doctors were waiting they were examining my daughter's two C.A.T. scans. The mass in the second C.A.T. scan appeared to be smaller than from the first scan. If the area was shrinking than it was not a mass after all.

After further testing it was determined that the mass was a large bruise caused by two vessels that had fused together and had burst, thus causing the grand mal seizures. Imagine our relief.

The prognosis was that she did have a seizure disorder, but that the Phenobarbital would take care of any further seizures. She was monitored closely for the next few years, with no reoccurrence and eventually was taken off of the medication. For ten years she lived a normal life, thinking she was out of the woods.

Unfortunately, two months after the birth of her first child, she went into grand mal seizures once again. She now has gone into full blown epilepsy. It is a struggle for her every day. Her medication now is a lot stronger and affects every area of her life. Her biggest fear now is being alone with her baby or even holding her. There are no warnings when she starts to seize.

They still have no reasoning for her condition, or any answers as to how to prevent the seizures without he use of the strong anti-convalescent medication.

We try to be as supportive as we can to help her through this. She feels so isolated and helpless. I can only imagine her anguish. I know how helpless we feel not being able to help our little girl.