Parents in Minnesota talk about death and life with rare form of epilepsy
“They are doing better than me,” Dawna Martineau said of her children.
When asked how she was doing, Martineau paused. Then Micah, 2, reached her place on her hip and kissed her on the cheek.
On October 18, Martineau discovered that his son, Zaiden, had died in his sleep. He was 6 years old.
Zaiden suffered from prolonged seizures from an early age. At 2 years of age, her symptoms were diagnosed to match Dravet syndrome, a form of epilepsy that begins in early childhood and continues with accumulated morbidity, according to the Dravet Syndrome Foundation.
Zaiden Martineau, 6. Contribution photo
“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 to 42 times more likely for patients with Dravet, Feyma added.
“It’s hard to know why. We wonder if this is related to seizures or other neurological phenomena, impacted heart rate, does breathing stop? ”He said.“ This is a condition that we don’t. do not fully understand. … We are a long way from that end point where I can look a family in the eye and say, “I can guarantee you SUDEP will not affect your child.”
Zaiden’s first seizure and hospitalization date back 10 months. There was a lot of trial and error to find an effective drug combination, but he didn’t have any 2 1/2 to 4 seizures.
Harmony Bellanger, 5, peeks through the legs of her mother Dawna Martineau on Wednesday, November 17, 2021. Jed Carlson / Superior Telegram
When they got back to about three a year, it would take three days for her to walk normally. Other times it would be too weak to feed.
Zaiden lost much of his vocabulary after a major seizure and was speaking two to four word sentences towards the end of his life.
He was a lively kid who loved to move, and although he had motor problems, Zaiden was good at wielding a basketball, said Cindy Gordon, a special education teacher at Laura MacArthur Elementary School.
At school, staff were prepared with walkie-talkies and water bottles, used to cool them down during strenuous activities. (High temperatures could cause a seizure.)
A calendar near the front door of Dawna Martineau’s house on Wednesday, November 17, 2021, again noted the first day of school for her children. Martineau’s son, Zaiden, died of Sudden Unexpected Death from Epilepsy (SUDEP) on October 18, 2021. Jed Carlson / Superior Telegram
“Dawna Rae is a great mother. She knew how to calm Zaiden down when he got angry. As the seizures increased, the behaviors increased as well. It took longer for her to calm down. Dawna was there when we did. needed her, ”Gordon said.
Zaiden’s attacks went from four in a month to 10 in a week. He started having convulsions in his sleep and was hospitalized in August, Martineau recalls.
Dawna Martineau smiles on Wednesday, November 17, 2021, as she watches a video of her photo of her son, Zaiden, who recently died of sudden and unexpected death from epilepsy (SUDEP). Jed Carlson / Superior Telegram
Returning to his home in Duluth, Martineau shared photos and videos of his son, noting the anniversary month of his death.
“It’s so quiet here. He was the loudest, ”she said. “Even though he was struggling, he was still smiling, laughing and joking.
“His laughter was contagious.
Zaiden loved basketball, kickball, and scooters. Ever since he was a baby he always wore Hot Wheels cars.
He was buried with two of them.
After her death, Zaiden’s aunt started a fundraiser on Facebook to help cover Zaiden’s gravestone and other funeral costs. In two days, she raised $ 4,521 of her goal of $ 4,000 before Martineau called for her closure.
It won’t be ready until spring, but Martineau’s vision for his gravestone is clear.
“It will be her photo, and I think two eagle feathers on both sides and her name under her photo,” she said. “By the time the snow melts, it should be ready to be placed.”
Dr Tim Feyma
Dravet syndrome, along with epilepsy, is caused by a genetic mutation. While it’s genetic, it’s not hereditary, Feyma said, so it’s not common for multiple diagnoses within a family.
“Mutations happen after conception,” he said.
Symptoms of Dravet syndrome usually begin between 1 and 18 months and are accompanied by frequent attacks. Inflammation and fever are triggers for seizures, and children can convulse for minutes to hours, which may require hospitalization or sedation to stop it, Feyma said.
It is believed that most children with Dravet or Dravet-like symptoms have normal development, and when seizures do occur, there is some regression and loss of skills. From there, children do not develop age-appropriate speech or cognitive skills.
And, many, but not all, will need a lot of help from caregivers with basic tasks.
Dawna Martineau holds her son, Micah Bellanger, 2, on Wednesday, November 17, 2021, as she talks about her son, Zaiden, who recently died of sudden and unexpected death from epilepsy (SUDEP). Jed Carlson / Superior Telegram
The foundations of support for children with Dravet begin with access to therapeutic services; an individualized school education plan; and physical, speech and occupational therapy, said Feyma.
After that, drugs, which are effective, especially for children with Dravet, are important.
These patients should start treatment early to avoid emergency room visits. To avoid this, he recommends a robust acute protocol that requires receiving medication 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,” said Feyma, “I don’t have epilepsy. “
“The people I deal with directly, or the parents, once you have epilepsy in your life, it’s like a cloud following you. … You always have to have a little forethought, a little planning. “What can we do if a seizure occurs while traveling, while camping. Epilepsy follows you everywhere. I only have empathy for these families.
“It’s chronic stress.
Fundraising for Zaiden Martineau’s funeral is now over. If you want to contribute to Dawna Martineau and her family, her PayPal account is @DawnaMartineau.
“She rules the roost”
Madolynn Erickson requires constant monitoring. His seizures are often silent and accompanied by changes in the face – eyebrows raised and lowered – or clenched fists. So her parents installed motion-sensitive cameras and alarms in their home.
From there, any family member can administer emergency medication.
Keri Erickson, left, and Corey Erickson, right, smile with their daughter, Madolynn, now 8, during Halloween festivities in 2021. Madolynn was diagnosed with Dravet syndrome at the age of 10 month. The Ericksons, of Bovey, Minnesota, have many strategies in place for Madolynn’s care, including a home camera system for constant surveillance. Contribution / Keri Erickson
“She doesn’t spend any time alone, which is okay now, but at some point in her life it will be,” Keri Erickson said of her 8-year-old. “I am not looking forward to being puberty. Hormonal changes can be bothersome.
Madolynn’s first seizure lasted over an hour. Madolynn was transported from their home in Bovey, Minnesota, to Duluth, where she was sedated, intubated and hospitalized for five days.
“We were terrified, so scared,” Erickson recalls.
A traveling doctor from Duluth finally performed genetic blood tests. From there, Madolynn was diagnosed with Dravet syndrome at 10 months, and Erickson was able to find and quickly connect with resources.
“At first it was difficult. I missed a lot of work. If we were a one-income family trying to pay all of these bills… A person can be ruined financially very quickly, ”she said.
Dravet syndrome falls on Social Security’s compassionate care list, so the Ericksons can receive medical assistance for Madolynn’s care.
“As painful as it can be to receive a disability letter in the mail for your baby, it is important. On top of everything that is going on, you don’t want to have hundreds of thousands of medical bills coming in, ”she said.
Madolynn’s triggers are arousal, illness, pattern sensitivity, flickering lights, temperature changes, and sunlight. If she grabs while standing, she slowly melts to the floor, but there is a risk that she sucks in or her head falls underwater if this happens in the bathroom – and it does, Erickson said.
“We don’t know if she will ever leave our house. She can live with us forever, ”Erickson said.
In the meantime, Erickson has grown more comfortable letting Madolynn hang out with his brothers, who both have dealt with his fits. She is also hopeful with various studies emerging on Dravet.
Madolynn is in the second year of specialized education. She doesn’t read or write yet, but she succeeds half of her alphabet, and on good days she can count to 15.
She’s “a spicy, spicy, fun little person” who loves LOL dolls and bath bombs, Erickson said. “She owns us, owns her brothers. She rules the roost. “
Learn more about epilepsy
Sources: World Health Organization, Epilepsy Foundation of Minnesota