Growing up with Epilepsy: Michael's Story

When Michael was about five and a half months old, his parents noticed that he made strange repetitive movements as he was waking up in the morning and after naps. They hoped these movements were normal but had an uneasy feeling that the behavior might be related to a neurological problem, possibly seizures.

Epilepsy's Impact on Learning: Working with Schools

A Web search for "baby seizures" turned up entries for West syndrome and infantile spasms, a serious and often debilitating seizure syndrome that can have a serious impact on a child's ability to learn. Fearful that Michael might be having infantile spasms, Maureen and Brian, Michael's dad, spoke with their pediatrician, and Michael was brought into the hospital for an overnight EEG. The clusters of repetitive movements were, in fact, diagnosed by an epileptologist as infantile spasms. To ensure that Michael might have the best opportunity for long-term well-being, treatment was started the same day the diagnosis was made. The medication Michael was put on stopped his seizures for two weeks.

About seizure types

Early Intervention

Because of Michael's epilepsy diagnosis and the subsequent risk for developmental delays, his family was referred to Early Intervention, a state program that provides in-home services for children at risk. Michael started receiving occupational therapy at six months of age, and speech therapy was added two months later.

By the time Michael's therapies were in place, his seizures were back. Therapists continued to work with Michael even during the months he was actively seizing, which was encouraging for his parents. Michael's mom says, "If everybody looked at him like, 'Oh my God, what's going on?' it would have set us back. They handled it very well, and it was great." Brian and Maureen believe that these early therapies helped Michael maintain and build skills in spite of his frequent seizures.

Seizure Control

Over the next year, Michael's seizures changed from infantile spasms to a mix of seizure types, including drop seizures. He continued to have 30 to 50 seizures on an average day, and 100 to 300 seizures per day when things were at their worst. His parents tried nine different seizure medications before finding a combination that finally worked.

In November of 2003, after beginning the ninth medication, they noticed a reduction in the number of seizures Michael was having, and by June of the following year he was seizure free. Michael is currently on two medications, and his family is in the process of weaning down his dosages with the hopes of having him off all medications within the coming year.

Learning

Gaining seizure control was an awakening for Michael, but the seizures had left a significant impact on his language and motor development. A neuropsychological evaluation showed that Michael's communication skills and motor function were several months behind that of his peers. At the age of 27 months, Michael still had no language; his parents heard only groaning sounds. With the seizures under control, however, they started to hear babbling and eventually words. He was a late walker, but with seizure freedom he soon became steady on his feet.

The neuropsychological evaluation bridged the gap between Michael's medical care and his school by focusing Michael's therapies on his areas of greatest need. Michael is in a mainstream classroom but also receives physical therapy, occupational therapy, and speech therapy. He has one-on-one tutorials that reinforce the concepts introduced in the classroom. The goal of these therapies is to help Michael close the gap between himself and his peers.

About epilepsy's impact on learning

Taking It Home

The process of catching up doesn't stop at the end of the school day. Michael's parents meet regularly with his teachers and therapists to coordinate what is being taught at school with what is being learned at home. Playtime often includes educational games and books to improve memory, vocabulary, and motor skills. Activities like identifying the shapes of household objects and sorting items by type or color help reinforce the skills that Michael is working on in the classroom.

Maureen comments, "His teacher has been really good at letting me know what he's doing in the classroom and in his therapies. The easiest thing can be therapeutic. Stirring cookie dough can be an occupational therapy task."

The Medical, School, and Home Triad

The teamwork among Michael's doctors, his teachers, and, most importantly, his family has made a world of difference in his development, helping him move forward in many ways. In gross motor, fine motor, and expressive language skills, he is still behind but close to catching up with his peers. In some areas he is on par with his classmates. He continues to gain verbal skills and has moved from one-word answers to phrases and short sentences.

Maureen says, "He has defeated the odds, and he surprises us and impresses us every day. We really feel that if we just keep going with the schools, with the medical personnel that are involved with Michael, that he will close the gap. And if he doesn't close the gap, he will still be a well-adjusted child and a happy child."