Minnesota parents talk death, life with rare form of epilepsy

Nov. 27—Harmony and Micah Bellanger made cat sounds as one crawled on their living room couch and the other ducked between the knees of their mother.

"They're doing better than I am," Dawna Martineau said of her children.

Asked how she's making it through, Martineau paused. Then, Micah, 2, reached from his place on her hip and kissed her cheek.

On Oct. 18, Martineau found her son, Zaiden, had died in his sleep. He was 6.

Zaiden suffered from prolonged seizures from an early age. At 2, his symptoms were diagnosed to match Dravet syndrome, a form of epilepsy that starts in infancy and proceeds with accumulating morbidity, according to the Dravet Syndrome Foundation.

"Patients with epilepsy have higher rates of sudden unexplained death," said Dr. Tim Feyma, pediatric neurologist at Gillette Children's Specialty Healthcare in St. Paul. And, sudden unexpected death in epilepsy (SUDEP) is about 8.4-42 times more likely for patients with Dravet, added Feyma.

"It's complicated as to why. We wonder is it related to seizures, or other neurological phenomena, impacted heart rate, does breathing shut down?" he said. "It's a condition we don't totally understand. ... We're far from that end point where I can look a family in the eye and say, 'I can guarantee you SUDEP won't affect your child."

Zaiden's first seizure and hospitalization was at 10 months. There was much trial and error to find an effective medication combination, but he was seizure-free from 2 1/2 to 4.

When they returned to about three per year, it would take him three days to walk normally. Other times, he'd be too weak to feed himself.

Zaiden lost much of his vocabulary after a major seizure, and was speaking two- to four-word sentences toward the end of his life.

He was a high-spirited child who loved to move, and while he had issues with motor skills, Zaiden was talented in handling a basketball, said Cindy Gordon, special education teacher at Laura MacArthur Elementary School.

At school, staff were prepared with walkie-talkies and bottles of water, used to cool him during strenuous activities. (High temperatures could induce a seizure.)

"Dawna Rae is an awesome mother. She knew how to calm Zaiden when he would get upset. As the seizures increased, so did behaviors. It took him longer to calm. Dawna was there when we needed her," Gordon said.

Zaiden's seizures increased from four in a month to 10 in one week. He began seizing in his sleep and was hospitalized in August, Martineau recalled.

Back in her Duluth home, Martineau shared pictures and videos of her son, noting the month anniversary of his death.

"It's so quiet here. He was the loud one," she said. "Even though he was struggling, he was always smiling and laughing and joking.

"His laugh was contagious."

Zaiden loved basketball, kickball and scooters. Since he was a baby, he always carried Hot Wheels cars.

He was buried with two of them.

After he died, Zaiden's aunt launched a Facebook fundraiser to help cover Zaiden's headstone and other funeral costs. Within two days, it raised $4,521 of their $4,000 goal before Martineau asked that it be closed.

It won't be ready until spring, but Martineau's vision for his headstone is clear.

"It's going to be his picture, and I think two eagle feathers on both sides and his name under his picture," she said. "By the time the snow melts, it should be ready to put it in."

Dravet syndrome, along with epilepsy, is caused by a genetic mutation. While it's genetic, it's not inherited, said Feyma, so it's not common for several diagnoses within a family.

"Mutations happen after conception," he said.

Dravet syndrome symptoms typically start between 1-18 months, and are accompanied by frequent seizures. Inflammation and fevers are seizure triggers, and kids can seize for minutes to hours, which can require hospitalization or sedation to stop it, Feyma said.

Most children with Dravet or Dravet-like symptoms are thought to have normal development, and when seizures kick in, there is some regression and loss of skills. From there, children don't develop age-appropriate speech or cognitive capabilities.

And, many, albeit not all, will need much assistance from caregivers with basic tasks.

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The foundations of support for children with Dravet starts with access to therapeutic services; a school individualized education plan; and physical, speech and occupational therapies, Feyma said.

After that, medication, which is shown to help, specifically for children with Dravet, is important.

These patients have to jump on treatment early to avoid emergency room visits. To prevent that, he recommends a robust acute protocol that requires receiving medicine at the onset of a seizure. If that fails, caregivers administer a second dose, and the next step is an emergency room.

"It's easy as a provider," Feyma said, "I don't have epilepsy."

"The people that either I care for directly, or parents, once you have epilepsy in your life, it's like a cloud following you. ... You always have to have a little bit of forethought, a little bit of planning. 'What can we do if a seizure happens traveling, camping.' Epilepsy follows you everywhere. I have nothing but empathy for these families.

"It's a chronic stress."

The fundraiser for Zaiden Martineau's funeral is now closed. If you'd like to contribute to Dawna Martineau and her family, her PayPal account is @DawnaMartineau.

'She rules the roost'

Madolynn Erickson requires constant supervision. Her seizures are often silent and accompanied by facial shifts — raised and lowered eyebrows — or clenched fists. So, her parents installed movement-sensitive cameras and alarms in their home.

From there, any family member can administer emergency meds.

"She gets no time alone, which isn't a big deal now, but at some point in her life, it will be," Keri Erickson said of her 8-year-old. "I'm not looking forward to puberty. Hormonal changes can be troublesome."

Madolynn's first seizure lasted more than an hour. Madolynn was transported from their Bovey, Minnesota, home to Duluth, where she was sedated, intubated and hospitalized for five days.

"We were terrified, so scared," Erickson recalled.

A traveling doctor in Duluth eventually conducted genetic blood testing. From that, Madolynn was diagnosed with Dravet syndrome at 10 months, and Erickson was able to seek and connect with resources quickly.

"Early on was tough. I missed a lot of work. If we were a one-income family, trying to pay all these bills ... A person can be financially ruined real quick," she said.

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Dravet syndrome falls under the Social Security Compassionate Care List, so the Ericksons are able to receive medical assistance for Madolynn's care.

"As painful as it is to get a letter of disability in the mail for your baby, that's important. On top of the other stuff going on, you don't want to have hundreds of thousands of medical bills coming in," she said.

Madolynn's triggers are excitement, illness, pattern sensitivity, flickering lights, temperature changes and sunlight. If she seizes while standing, she slowly melts to the floor, but there's the risk of her aspirating or her head going underwater if it occurs in the bathroom — and it has, Erickson said.

"We don't know if she'll ever leave our home. She may live with us forever," Erickson said.

In the meantime, Erickson has grown more comfortable with letting Madolynn go outside with her brothers, who have both handled her seizures. She is also hopeful with different studies emerging on Dravet.

Madolynn is in second grade special education. She doesn't read or write yet, but she makes it through half her alphabet, and on a good day, she can count to 15.

She's "a spicy, spicy, fun little person" who loves L.O.L. dolls and bath bombs, Erickson said. "She owns us, owns her brothers. She rules the roost."

More on epilepsy

— About 200,000 cases of seizure disorders and epilepsy are diagnosed each year, and more than 50 million people worldwide are living with epilepsy.

— Unrelated to a diagnosis, 1 in 10 people will have a seizure in their lifetime, and 1 in 26 will develop epilepsy.

— More than one 1 of 1,000 people with epilepsy die of sudden unexpected death in epilepsy (SUDEP) each year.

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For more information about Dravet syndrome, visit dravetfoundation.org or epilepsyfoundationmn.org.

Sources: World Health Organization, Epilepsy Foundation of Minnesota

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