Kacy Kakela, Runa Anderson, and Becky Borgen were thinking they should get their kids together and take a picture, so they agreed to meet up at KA Studios on Saturday morning for a photo shoot. All three kids need to wear a brace for scoliosis. Kacy’s son, Brody Steinmetz, only recently discovered his scoliosis - somewhat by accident.
“Last summer I was working at the airport, and I bent over to pick up a box of chemicals, and my shirt kind of flipped up,” said Steinmetz, “and the guy I was working with saw my back and said, ‘there’s something messed up with your back. I think you have scoliosis.’ I ended up going up to Canada, and he sent me to get x-rays. I have two braces, one that I wear at night and one that I wear during the day, 16 hours total.”
Borgen spotted it in her daughter, Taylor, at a young age because she was watching for it.
“I found it when she was ten months old,” said Borgen. “I saw her sitting up, and it looked a little funny on her back so I had it x-rayed. It’s something she was predisposed to because I have scoliosis.”
Taylor said the brace does not get in the way much, but it isn’t very comfortable.
“It just makes it harder to bend down with this thing on, for sure,” said Taylor, “and getting my pajamas on.” She only needs to wear it at night now unless it gets worse.
“With Clyde, we caught his when he was two, which is very early for scoliosis,” said Anderson. “He would sit crooked, and I thought he probably had scoliosis. I called his doctor and told him I’m pretty sure Clyde has scoliosis. I took a picture of his back, and he said 'yeah, you should come in'.” Clyde wears his brace all day every day and to bed.
“Clyde’s brace is the same design as Brody‘s,” said Kakela. “My thinking was that we need to get a picture of them together because they’ve gone through a lot more than Brody has or ever will. Big kids can wear braces like little kids, and nobody’s any different.”
Borgen agrees and said, “I think it’s good for them to see each other and connect and see that they all have something in common.”
The three kids have something else in common too: they are just like all other kids.
“I like to hunt and fish and play sports,” said Steinmetz. “I can’t play football. The doctor said that would hurt my back, but I can play hockey. You can get hurt from the way you get hit in football because they lower their shoulder when they tackle. With hockey it’s kind of a shoulder to shoulder hit, and you have the boards.” He said the brace doesn’t interfere with too much at school.
“I don’t wear it when I have PE or when I eat,” said Steinmetz. “When I have to sit in a chair for a long time it can bother me. If you’re standing for a while, it’s nice to sit, and if you’re sitting for a while, it’s nice to stand.” He said some teachers understand and let him stand when he needs to, but some don’t.
Taylor’s favorite class is art. Clyde likes ceiling fans, taking anything apart, and lights.
“My husband made him a ceiling fan frame,” said Anderson. “It’s wired so you can plug it in, and Clyde will actually do the wiring. He’ll plug it in and turn it on, and the ceiling fans will be functioning. He spends a lot of time in the garage.”
All three moms agreed that Langdon has been an awesome community for their kids.
When Taylor was diagnosed, Borgen worried. “I asked my husband, Craig, ‘What if kids are mean, what if she doesn’t have any friends?’ And Craig said, ‘But we live in Langdon, Becky. It will be ok.’ And that’s exactly how it’s been.”
“I feel like this community is very open-arms,” said Anderson. “For us we’ve been super lucky. Clyde does not like to sit at home and do nothing. We are in town, and he’s out and about in town. He likes to go to the library with his grandmother, Linda Balsdon. He’s little enough to where kids aren’t quite mean yet. Clyde goes to Saint Alphonsus so he has been with the same kids for years.”
Kakela said that Steinmetz’s friends have been super nice. “They help him put his brace on after lunch or in the mornings. We’ve never had any issues at all.”
Anderson said that she has experienced some doctors that lack tact or a good bedside manner. She has had some awkward encounters out of town, not necessarily with people being mean but not exactly having any tact. Sometimes friends don’t know what to say or how to talk to a parent dealing with their child’s medical issues. They may feel their problems are comparatively small.
“Everybody has struggles; it’s just that our struggles are different than yours,” said Anderson. “Just talk to me like normal. I want to hear about your kids. I want to hear about your day. Tell me a joke.”
Borgen said that her dad was the one that noticed something was not right with her back when she was younger, but by that time there was nothing they could do about it. Treatment for scoliosis needs to happen while a child is still growing. Taylor and Clyde’s scoliosis was found early because they were looking for it or were going to the doctor regularly.
“But what about somebody else who doesn’t have anything else and doesn’t go to a doctor on a regular basis like we do?” Borgen asks.
For decades, scoliosis screenings were a routine part of school physical examinations in adolescents. This was usually done using the Adam’s bend forward test. It was simple, but accuracy was variable. Routine clinical screening for scoliosis is controversial in the medical community, not whether it should be done in schools but whether it should be done at all. Studies have both supported and discouraged routine screening.
The U.S. Preventive Services Task Force (USPSTF) concluded in 2004 that “the harms of screening asymptomatic adolescents for idiopathic scoliosis exceeded the potential benefits.” The American Academy of Family Physicians has concurred with this recommendation. Public Health Nurse Steph Welsh pointed out that this recommendation does not apply to children and adolescents presenting for evaluation of back pain, breathing difficulties, abnormal radiography findings or other imaging studies, or obvious deformities in spinal curvature.
The Scoliosis Research Society, American Academy of Orthopaedic Surgeons, American Academy of Pediatrics (AAP), and Pediatric Orthopaedic Society of North America convened a task force in 2007 supporting scoliosis screening, while recognizing the need for greater care in deciding which patients with positive screening results need further evaluation. They released a statement in 2015 stating that screening examinations for spine deformity should be part of the medical home preventative services visit for females at age 10 and 12 years and males once at age 13 or 14 years. The challenge for the primary care physician is differentiating adolescents with higher-risk scoliosis requiring referral or intervention from those with lower-risk scoliosis requiring observation and no intervention.
The AAP and Bright Futures developed a set of comprehensive health guidelines for well-childcare known as the Periodicity Schedule. It is a schedule of screenings and assessments recommended at each well-child visit from infancy through adolescence. Your primary care provider or the Cavalier County Public Health District can help you make sure your child has the screenings and exams they need when they need them.