Michael’s Story

Before the age of two, Michael was developing normally. He was a happy, healthy toddler who was meeting and exceeding all developmental milestones. However, on February 4, 1996, when he was 22 months old, we entered the worlds of epilepsy and special needs.

Michael was having a typical day—running through the clothes racks at the mall, laughing, and at eight and a half months pregnant, wearing me out. When we came home, Michael went into the bathroom to brush his teeth. All of a sudden, he was on the floor, and appeared to be choking on his toothbrush. When the ambulance arrived, the paramedics found that he had a temperature of 104. His first seizure was febrile (brought on by fever), and we were reassured by the possibility that this could be a one-time event.

Two weeks later, Michael began falling. He had his second seizure. We began all the tests: CT scan, EEG, MRI, blood tests—all came back normal. The seizures continued and escalated, even though he had begun to take his first anti-seizure medication. We added a second medication, but the seizures started coming in clusters and he developed new types of seizures. By the end of April, his seizures were coming every minute, and he was in a state of constant seizing called non-convulsive status epilepticus. We administered daily doses of IV or rectal emergency anticonvulsants and started a special diet. By the end of May, his EEG showed the spike/slow wave of Lennox-Gastaut Syndrome, an extremely severe epilepsy category, and we had to consider putting our son in a helmet to protect his head from all the falls.

A medication only used in dire circumstances, due to the risk of aplastic anemia, finally gave Michael some relief. He continued to have seizures most days, but we were able to avoid giving him emergency anticonvulsants. It was at this time, six months after the seizures started, that we noticed Michael wasn’t learning new skills, and was actually regressing in many ways. He talked less, and could no longer identify colors and numbers. He lost ground on toilet-training. At the age of two and a half, he began an early intervention program including speech and occupational therapy. When he turned three, he put on a backpack almost as big as he was, and began taking the bus to the public school. He was on par with other three year olds who were delayed. But as the other children progressed, Michael didn’t.

After another medication change, Michael had the longest break from seizures he has yet to experience—11 weeks. He was taking four different medications. Anxious to reduce the side effects, we decreased one of the medications, but his seizures returned and became even worse. We increased to the original dosage and much higher, without success.

In 2001, when Michael was seven, we had a device implanted, which sends regular electrical impulses to his brain. We saw some improvement over time, but still did not have seizure control.

Now twenty-two, Michael continues to struggle to retain skills. While he can quote portions of lines from favorite books, videos and songs, he has a functional vocabulary of about 25 words. Many days, he has a difficult time asking for what he wants, even with the assistance of a communication device. He is not able to carry on a conversation or even answer a question. Now that he has graduated from the school system, community-based day programs will not accept him into their programs. We had to partner with other families with similar young adults to create our own.

After many years of blood tests, EEGs, MRIs, PET scans, biopsies, chromosomal and genetic tests, no cause for the seizures has been found. After 21 medication trials, a diet, and an implant, he continues to have seizures each night during sleep, and endures status epilepticus episodes every three to six months.

Along the way, we’ve dealt with drooling, rashes, tics, diarrhea, constipation, insomnia, ringing in the ears, night terrors, choking and vomiting. He has suffered from just about every known type of seizure, and remains at the cognitive level of a three year old. We do not know, and may never know, how much of this is due to the medications, the seizures, or whatever is causing the seizures.

Through it all, Michael thankfully has maintained his pleasant, easy-going personality. His basic needs are simple—eat, sleep, read a book, watch a video, listen to music. He is willing to go for a walk, go bowling, put away dishes from the dishwasher, and go anywhere that involves a bike, car, bus or train. He has taught all of us so much about enjoying the simple pleasures in life, like Winnie the Pooh, Stitch, Dr. Seuss, taking naps, and giving hugs. When Michael enjoys something enough to laugh out loud, we all laugh with him—we are so happy to see him happy. Of course, what would really make us happy is to have seizure control, and for Michael to progress, even if it is just to the point of completing daily living skills independently.

We are thankful for organizations like CURE for focusing on research toward finding a cure for epilepsy. CURE provides us, and generations to come, with hope for a brighter future.