Colton De Keyser and Family

Colton Header

Learning to adapt to life with pain, this young man looks to his mom—and migraine advocate—for guidance.

On a family vacation in 2014, 10-year-old Colton seemed a little off to his mom, JP Summers. He said he needed to lie down—he felt sick to his stomach and the light hurt his eyes. Colton slept for six hours, and when he woke up, he was fine, if a little bit out of it, says JP. She released her worries.

But a few weeks later, when JP was in Washington, D.C. for the annual Headache on the Hill (an advocacy and lobbying event organized by the Alliance for Headache Disorders Advocacy), she got a panicky call from her mother. Colton was screaming in pain. JP told her mom to give Colton an ice pack for his head, some children’s Tylenol, and a little caffeine. He vomited, but then he felt fine.

“In the back of my mind, I was worried, for sure,” says JP—who has lived with migraine since she was 10 years old. “As someone who knows what it is like, you don’t want to believe your child is going to have the same thing.”

Two days later, Colton was sick again—and the family physician diagnosed early onset of chronic migraine. Over the next three weeks, as the family waited to see a neurologist, Colton went to the emergency room three times for pain. He was so ill he couldn’t walk, get out of bed, or go to school.


 

Diagnosis: Abdominal Migraine

When they finally saw the neurologist, he diagnosed Colton with abdominal migraine—a condition that typically impacts school-age children. (Children with a family history of migraine are more likely to experience abdominal migraine, according to the National Headache Foundation.)

Abdominal migraine is an often-misunderstood condition, because children aren’t always able to articulate the triggers. Unfortunately, the lack of knowledge about abdominal migraine can also lead to children facing stigma at school, or—even worse—being disciplined or held back for missing school because of illness.

Case in point: A year after Colton’s diagnosis, he wasn’t experiencing any improvement in symptoms. In an effort to find an approach that would provide relief, Colton’s family searched for a new health care provider. It took a lengthy evaluation process with not only the neurologist and Colton’s parents, JP and Tony, but also all of Colton’s teachers, because there was concern that some emotional or psychological issues were the cause of his abdominal migraine.

“I don’t like when people think I’m trying to get out of school by pretending I have a migraine,” says Colton. “Migraines hurt really bad—I would never fake them.”


 

Learning to Live with the Pain

Now that Colton has a great relationship with a neurologist he and his family trust—Colton says she’s one of the few people he can speak with openly about his migraine experience—the family is able to focus on creating a lifestyle that minimizes his pain, and get back to some sense of normalcy.

“When I have a migraine, my head starts to throb and all I want to do is lie down in a dark room,” says Colton, now 13. “When I get my abdominal migraines, the area all around my belly button hurts. It feels like someone is stabbing me over and over. If I sit up, the pain gets stronger and then I feel like throwing up, which I do most of the time.” Weather changes are some of the biggest triggers for Colton’s migraine attacks.

Colton’s treatment plan incorporates the use of triptans, which help some of the time, and time-released preventatives, which have resulted in an improvement in his symptoms.

JP says at first, she was extremely worried for Colton—but it’s gotten easier over time. While the medications he takes make her very ill (and vice versa), there are some things that help them both cope with migraine, like supplemental oxygen to help with dizzy spells, and CryoHelmets, which cool their heads during migraine attacks.

 


Focus on Education and Athletics

Colton says he was concerned he would have to miss too much school because of migraine. He misses school sometimes, but tries his hardest to attend: “Most days, I go to school not feeling well,” he says. “I don’t want to miss anything. I really like when I can do something without my head or stomach hurting.”

The family originally worked with the school on a Section 504 Plan, which prohibits discrimination of children in school for having a disability. The plan helped ensure Colton could receive accommodations like taking tests in a room that is darker, carrying a water bottle at all times, and the ability to leave the lunchroom if it gets too loud. But it wasn’t enough—he was still getting penalized for missing class.

So Colton’s teachers, principal, and parents worked out an Individualized Education Plan (IEP), which gives the school much more latitude to accommodate Colton’s needs and ensure he completes enough school to get a solid education. Unlike a 504 Plan, the IEP ensures Colton (and his parents) aren’t punished for truancy if he misses class; teachers send home assignments and prioritize coursework to ensure he has an adequate balance of proficiency to keep moving forward.

Colton also loves playing football for his school’s team, the Suring Eagles, and his coach and teammates have been accommodating and supportive of his needs, he says. His neurologist had to approve his participation, and his parents and principal also played a role in the decision. “As long as he doesn’t have more symptoms and it doesn’t interfere with his schoolwork, it’s OK,” says JP. “Our goal is always to let him be a kid—and an individual—and to have as much fun and life experience as he can get.”

“The neurologist and doctor say exercise is good for my health, and it’s fun,” says Colton. He drinks a lot of water all day and takes extra vitamins at night to ensure optimal health. “Sometimes I have to miss practice, or half of practice, but I still make it work.”


Headache: A Family Affair

Over the years, JP has taken on a larger advocacy role, participating in local and national educational efforts and working as a Pain Ambassador for the U.S. Pain Foundation. Her experience has helped her cope with Colton’s migraine. “It’s important to take care of myself, as much as him,” she says. She joined some online support groups for parents of kids with migraine, which helps.

“I had to learn how to help Colton, because his migraine is so different than mine. I felt useless, even though I know so much about migraine—it can be so frustrating,” says JP. “On days when Colton is miserable, I sometimes feel guilty, like ‘Why is he having a bad day when I feel fine?’ On those days, I would trade places with him in a heartbeat.”

JP has worried that her other son, 12-year-old Caleb, would feel left out of things, because Colton so often gets more attention and urgent concern—so she and her husband make sure to plan special things for Caleb, and for the whole family to enjoy together. They also have a daughter, Tayelor, who is 20.

“Tayelor has grown up helping me, bringing me ice packs when mommy had a headache,” says JP. “And Caleb and Colton always understood that sometimes mommy would need to lie down. But for a while, Caleb worried he was going to be ‘next’ to get migraine.” JP says Caleb understands now that migraine is just a fact of life for his brother and her, and that the whole family has a role to play in taking care of each other.

All their work has paid off. JP recently went back to work for the first time in years, and she says Colton has more good days than bad days, which is an improvement over where he was a few years ago.

The family shares a number of hobbies, including collecting small toys called Funko Pops. (“We’re always driving all over trying to find the rare ones!” says JP.) They love going to the movies together, and look forward to big releases of superhero movies. Colton is an avid reader, too, especially of superhero comics.

The decision to share his story is rooted in Colton’s desire to help others. “I want people to understand that there are lots of kids who have migraine,” he says. “I want people to be more supportive of people with migraine in general.” With the help of his family, he’s making that possible.

Resources:

U.S. Pain Foundation: uspainfoundation.org