Migraine tortured this teen for years. Then she found ‘miracle’ solution in Kansas City
One morning when she was in middle school, Sonja Mae Burnett woke up at home in Arkansas with a migraine headache. It was her first. She wound up suffering for years until she found a solution nearly 300 miles away in Kansas City.
At first, her vision got blurry. Then the girl who played volleyball, and alto sax in the marching band, tripped and fell and bumped into walls. Her brain stopped recognizing up from down, left from right. When she thought she was standing still, she was wobbling.
And when Meredith Burnett’s “child with higher vocabulary,” a chess club member, began speaking in smaller words, she thought: “Oh-oh.”
“My child was disappearing,” said Burnett. “The child I knew prior to migraines was gone.”
When doctors in their rural part of northwest Arkansas couldn’t find a solution, they referred the Burnetts to the pediatric headache specialists at Children’s Mercy in Kansas City.
Sonja, who is now 17 and a high school junior, says the solution she found in Kansas City “was a miracle.”
She is one of about 10,000 children the headache specialists at Children’s Mercy treat each year, said Dr. Trevor Gerson, Sonja’s doctor in Kansas City.
Children’s Mercy estimates more than 40,000 children in the Kansas City metro suffer from moderate to severe headaches, and says the numbers are growing.
In the United States, 10% of all school-age children and up to 28% of teens 15 to 19 live with migraine, according to the American Academy of Pediatrics.
“I see school-age kids. We see young preschool kids. It’s a big problem,” said Gerson, who agrees with researchers who say migraine in children merits more study.
“I see a lot of kids with headaches every day, and a lot who have headaches all day every day, headaches that do not go away, period.”
He and his headache clinic colleagues created a website — HeadacheReliefGuide.com — to help parents and teens understand what causes headaches and how they can be controlled.
It can be a steep learning curve, as Burnett discovered. Finding out that the family’s health insurance doesn’t cover the cost of the device that has finally given her daughter peace was an unwelcome surprise.
Sonja’s “miracle” is a small wearable, wireless medical device called Nerivio, cleared last year by the Food and Drug Administration to be used for migraine in children 12 and older. It was previously approved for patients 18 and older.
Controlled by a smartphone app, it scored high cool-factor points with the teen.
“I was so shocked, because it has an app that I could use on my phone, so I got to control it,” she said.
‘Very big and sudden shock’
Migraine — a neurological disorder and not just a type of headache — often goes undiagnosed in children.
For one thing, many headache centers will treat older teens but not younger children, the American Migraine Foundation says, forcing families to travel to find help from pediatric headache clinics like the one at Children’s Mercy, which are fewer in number.
And until recently treatments for teens have been limited because most migraine drugs and medical devices were approved for ages 18 and older.
Sometimes, doctors dismiss a child’s head pain. Yet half of the people who get migraine headaches have their first attack before they’re 12. Sometimes, children are not properly diagnosed or offered treatment.
On the other hand, the migraine foundation has expressed concern that too many doctors prescribe opiates for headaches; Children’s Mercy does not “since research has shown that these medications can actually lead to worsening problems,” the hospital’s website says.
The Burnett family pediatrician was confused about why Sonja’s headache had come on so suddenly and referred them to specialists. There were visits to many. “We couldn’t find a cause for it,” said Burnett. “To have this sudden change of daily migraines, with no relief, was very big and a sudden shock.”
It’s not clear what causes migraine, said Gerson, which “gets back into what I was saying (about) migraine being underfunded as a disease state. There’s a difference between what causes it versus what can trigger a migraine.
“And the whole part of triggers, that’s another thing that’s evolving. What we used to think of as triggers, like chocolate and different things, we know actually that’s not really a trigger.”
In one recent study, young headache patients ranked “school” as a potent headache trigger, more so than parents and other commonly known migraine triggers such as lack of sleep and missed meals.
Diagnosis can be tricky because there is no lab test that identifies migraine. And, doctors say, children sometimes don’t have the vocabulary to describe their symptoms, which can differ from grown-ups.
Adults generally describe a migraine headache as pounding on one side of the head, whereas children, especially younger than 8, often say they feel the pain across their entire forehead.
“One thing to understand is that migraine is much more than just pain in the head. We know that it’s actually an attack on the brain,” said Gerson. “So the brain can change days before a migraine, where it affects hormone levels, it affects sleep, it affects appetite, it affects concentration, light sensitivity, all kinds of symptoms.
“And then there’s the actual attack, which is head pain. In younger kids it can be more belly pain, vomiting, nausea, lights bother them, sound bothers them. They can’t move because movement makes the headaches worse, so walking around even can be unbearable.”
‘They sent us to Kansas City’
“Every single day I woke up with a migraine, I went to bed with a migraine. I always had it,” said Sonja. “And as I went from doctor to doctor, I tried to keep hopeful, but I was just trying to find a way that I could eventually have a day where I didn’t have one of my headaches.”
One day at high school, while talking to band friends, Sonja got dizzy and fell down a hill so fast she couldn’t stop. “I ended up dislocating my knee, breaking both my leg bones and tearing up all the ligaments. So three surgeries later I now have a working left knee again.”
The headaches didn’t go away while she was in the hospital. The injuries just kept her focused on a different pain.
It took nine months for her knee to heal and then, without the distraction of that pain, “the migraine seemed to peak,” said Burnett.
Sonja got to know that hospital, an hour’s drive from home, well because her doctors in Arkansas hospitalized her when the migraine pain become unbearable — two hospital stays a month at one point. They gave her pain medication intravenously. The stays sometimes stretched to five days.
“And they finally said we don’t have any other treatment. We’re going to send you to a facility that will actually, hopefully, be able to help,” said Burnett.
“They sent us to Kansas City. That was very much a blessing.”
Trial and error
The idea behind using medical devices to treat migraine “has been around for a few years,” said Gerson. “But it’s really in the last few years that we’ve really had these devices that are FDA approved to treat migraines.”
Nerivio was approved for adolescents last year, one of only a handful of devices the FDA has approved thus far for migraine therapy.
The headache clinic at Children’s Mercy has a big tool kit of pharmaceutical and non-pharmaceutical options at its disposal — including acupuncture, aromatherapy, hypnosis, IV infusions, cranial nerve block injections, Botox injections for children who don’t respond to other treatments.
Finding the right therapy for a child can take trial and error, “because everyone reacts differently,” said Gerson.
He chose Nerivio for Sonja. It’s a little rubbery patch that gets strapped to her upper arm with an adjustable armband and can be worn under her clothes and during daily activities.
“It works by a method we call conditioned pain modulation,” said Gerson.
That means the device stimulates nerves in the upper arm to activate the brain’s natural pain-blocking mechanism, which stops the headache. Sonja controls the process through her smartphone.
“I was surprised how easy it was to use. Because at first when they said it was a medical device that connects to your arm … I was a little frightened, actually,” she said.
“But then the ease of using it. So just setting it on my arm, pinning it down with an arm band, and its little electrodes help my migraines, almost instantly.”
The first time she put it on, “it was like my pain just slowly, step by step, left, like it just disappeared,” she said.
“And it was really shocking because I started realizing that I could, I myself,through my small action of putting that device on, could wipe my migraine out versus what we had been going through for months and years at this point.”
Each device is good for 12 treatments and is then replaced. Patients decide how often to use it.
Gerson is optimistic about medical devices like Nerivio and others to come. The Department of Veterans Affairs, which says veterans are more likely to experience migraine than civilians, makes the device available through VA health care providers.
“I think it’s going to be a big deal,” he said. “Rather than putting medications in which have a lot of side effects, let’s use different devices to kind of get to the core of the migraine — which we’re also still trying to figure out — and then actually fix the underlying process.”
The Burnetts pay $49 for every device Sonja uses through a manufacturer’s savings program. Their health insurance doesn’t cover the device, which Burnett expects her daughter will need for the rest of her life unless the headaches go away when she’s older, or a cure is found. The device is eligible for coverage for anyone with active pharmacy or medical insurance, according to the company.
Most children with migraine have headaches when they’re adults, too. By then, twice as many women than men suffer migraines.
Burnett worked for the insurance company until she quit to teach science at her daughter’s high school to be close to her while they figured out her health emergency.
She wishes more insurance plans would cover the device because not every family can afford it — list price is reportedly $599 for a 12-treatment unit — and “they’re losing out on a treatment that may fix it for their child so they can function on a day to day basis,” said this grateful mom.
This story was originally published March 28, 2022 at 5:00 AM.
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