Baby girl's parents need help to raise child with seizures

The baby quilt and sheets in the crib match the purple and blue paint on the walls in the nursery, but at 7 months Delia Binette has never slept in the room that was so lovingly prepared for her. It’s been in only the last month that Delia has stopped sleeping in her parent’s bed at night, although she still stays in their room.

From birth, Delia has suffered from full-body seizures, which include a loss of consciousness and violent muscle contractions. The seizures were eventually diagnosed as epilepsy, but not until after she spent several weeks in the hospital, both at Maine Medical Center and at Children’s Hospital in Boston.

Delia Binette has spent much of her young life in the hospital. It took about a month after her birth in September for doctors to figure out her full body seizures were being caused by epilepsy.

Although Delia is now down to about one seizure a month, she’s already experienced more than 60 seizures. She mostly suffered them during the first five months of her life, when she often had as many as seven seizures a day. Not knowing when Delia could have a seizure is a constant worry to her parents, Jason and Kristine Binette of Sanford.

“Every movement, every gurgle or noise that she makes, I wonder if it’s the start of a seizure,” Kristine said. “That’s the constant dark cloud over our heads. Seizures can happen at any time of the day or night. Since Delia was born, our lives have been a roller coaster – always ups and downs.”

Although Delia, 7 months, just learned to roll over, her parents think she might just walk before she crawls. Delia certainly is able to easily get around the house in her walker on wheels.

But what’s been the most frustrating for the Binettes is that there are no support groups and virtually no resources available in Maine for epileptics and their families. The closest place to reach out for help is the Epilepsy Foundation of Massachusetts and Rhode Island, based in Boston.

To help change that, Kristine Binette has organized two upcoming fundraisers to help bring an affiliate chapter of the Epilepsy Foundation to Maine. One of the fundraisers is a dance that will take place on Saturday night at the Rochambeau Club in Biddeford. The other fundraiser is Maine’s 1st Walk for Epilepsy, a 2-mile walk that will take place on Sunday, May 18, at Young Elementary School in Saco.

Since Delia was diagnosed with epilepsy, Kristine and Jason have only met a few other families with epileptic children. Those meetings only happened by chance, mostly during lengthy stays at the hospital, according to Kristine.

Jason Binette, Delia's father, said it was an anxious time while he and his wife waited for the doctors to tell them why Delia was experiencing so many seizures.

She hopes the two upcoming fundraisers will give families with epileptic children a chance to meet and talk about their struggles and learn from each other. Kristine said even people in her own family don't have a full appreciation of the randomness of Delia's seizures or the effect it has on the Binettes' daily lives.

The paramedics have been to the Binettes’ house four times since Delia was born in September. Kristine and Jason called the ambulance because they couldn’t get Delia’s seizures to stop. Having uncontrolled, prolonged seizures could lead to serious brain damage and developmental delays.

Looking at Delia today – a happy-go-lucky baby with a beautiful smile and big green eyes – one would never know just how sick she was for the first few months of her life. And even though Delia’s almost constant seizures have now stopped, Kristine still carefully watches her daughter’s every move.

Four-year-old Morgan Binette is a big help to her mother, Kristine, in caring for younger sister, Delia. Morgan likes to give Delia kisses on her tummy and gets new diapers out of the closet without being asked.

Delia is never out of her sight for more than a few minutes at a time. Even when Kristine is driving, she keeps watch by putting a mirror over Delia’s car seat so she can see Delia’s face at all times.
Since Delia has had seizures from birth, she is developmentally a little behind other children her age. She just learned to roll over, she still has trouble sitting up by herself and she is not yet crawling. Delia also sees an osteopathic doctor, who works on strengthening her muscles.

“We get so excited every step forward that she takes. Having a child with epilepsy really makes you slow down and not take things for granted. I don’t think people with children who are 100 percent healthy truly know how lucky they are,” Kristine Binette said.

According to the Epilepsy Foundation of America, just about 3 million people in the United States have epilepsy. Epilepsy is caused, according to the foundation, by brief, but strong electrical disturbances in the brain. These episodes lead to seizures, which often affect normal brain and bodily functions.

There is no way to determine how many people in Maine have epilepsy, according to Dr. Dora Anne Mills, director of the Maine Centers for Disease Control. She said no public health agency in Maine keeps track of epilepsy because it’s not considered a fatal disease.

About 200,000 new cases of epilepsy are diagnosed each year and the incidence rate is highest for those under the age of 2 and for those over 65, according to the Epilepsy Foundation. However, epilepsy can strike anyone at any age.

For 70 percent of those diagnosed with epilepsy, like Delia, no cause is apparent. Known causes of epilepsy, according to the Epilepsy Foundation, include head injuries, a lack of oxygen to the brain during birth, lead poisoning or infections like meningitis and encephalitis.

In Delia’s case, doctors did a multitude of tests, including blood tests and imaging procedures such as CT scans and MRIs tests to rule out any other causes of her seizures, such as low-blood sugar, kidney failure or a brain tumor.

Because she has no family history of epilepsy, and since epilepsy is relatively rare – only about 1 percent of all people suffer from it – Delia’s diagnosis took a while.

Only about 30 percent of people with epilepsy have full-body seizures, like the ones Delia suffers, according to Susan Welby, program coordinator for the Epilepsy Foundation of Massachusetts and Rhode Island. She said it’s a common misconception that everyone with epilepsy has seizures that cause their bodies to convulse.

In fact, Welby said, 70 percent of people have what are known as “partial complex seizures” that just looks like “very strange behavior.”

She said some epileptics have seizures that cause them to constantly smack their lips or to wander about aimlessly. Some even pick constantly at their clothes.

According to Welby, the type of seizure an epileptic has depends on the part of the brain affected by the electrical disturbances. She said that since some seizures are seen as just “bizarre and inappropriate behavior,” it can take a long time for someone to get an epilepsy diagnosis.

“It’s a spectrum disorder. Some people can enjoy complete seizure control and a normal life. But others have totally uncontrolled seizures and a poor quality of life,” said Welby.

According to Delia's doctor, Stephen Rioux of Maine Neurology, some people with epilepsy have what’s called a “trigger” – an environmental or physiological reason to have a seizure – but many, like Delia, don’t.

Kristine and Jason have been warned that Delia could suffer more seizures if she becomes overtired or sick. Kristine also said Delia could suffer from seizures more during times in her life when she’s going through hormonal changes, such as puberty and menopause.

Rioux said the first line of defense for people with epilepsy is to put them on anti-seizure medications. After Delia was diagnosed, she was put on a variety of such drugs, Kristine said, but she developed an allergy to one of them and none of them are tested for use in infants. Therefore, Kristine and Jason are keeping Delia off medication for now.

Rioux said for some people with epilepsy it’s a mild irritation, for others the seizures can lead to profound retardation and other learning disabilities. Therefore, in addition to not knowing when a seizure might happen or how bad it might be, Kristine is also constantly worried the next seizure could lead to severe brain damage.

In addition, unlike some children with epilepsy, Delia is not likely to grow out of it, according to Rioux. Kristine and Jason were told Delia is likely to suffer from epileptic seizures her whole life.
“When I think about her being in school, or what her life will be like as a teenager, I worry so much,” Kristine said. She said there is such a stigma associated with epilepsy that a lot of people who have it don’t admit to it, even to friends and co-workers.

“I don’t want Delia to go through that. I want her to be able to say, ‘Epilepsy is not who I am, it’s only a part of who I am’,” Kristine said.