Last year when 10-year-old Wyatt Johnson was thirstier than usual and drinking a lot of fluids, his mom Amanda thought it was due to him playing football in the hot August sun.
He had lost weight, but was growing taller and going to a lot of football practices, so she thought his weight loss was due to his recent extra activity.
When he woke up one night in late October 2018 throwing up, she and her husband Scott just thought he had a bad stomach virus.
“There is a Type 1 diabetes awareness problem,” Mrs. Johnson said. “Even as a teacher of 17-18 years … I didn’t know it could present that way.”
Type I diabetes (T1D) is the more severe of its sister Type II, and it is a chronic condition in which the pancreas produces little or no insulin. Insulin is a hormone needed to allow sugar (glucose) to enter cells to produce energy.
Mr. Johnson stayed home with Wyatt that day they thought he had a stomach bug, but when Mrs. Johnson returned home that afternoon, she said she knew he needed medical care. His face was gaunt, his appearance so different than usual, his heart rate through the roof, and he could barely walk on his own.
They rushed to their pediatrician’s office – Mrs. Johnson knew if she went to the emergency room to people who didn’t know what Wyatt usually looked like, his symptoms might get passed off as the flu.
They knew something more was wrong.
They were right.
Their pediatrician informed them that Wyatt was experiencing diabetic ketoacidosis (DKA), which is a condition that develops when the lack of insulin makes your body begin to use fat as fuel. This in turn produces a buildup of acids in the bloodstream called ketones.
They were told to call their family, and that a helicopter was on its way to meet them at Conway Medical Center to fly him to the Medical University of South Carolina in Charleston.
Wyatt’s seven-year-old sister Emory, at home with her grandparents, said she helped quickly pack things for her mother.
Back at the hospital, Wyatt’s blood was tested at the lab before getting on the helicopter, since his blood sugar was too high for the pediatrician's equipment to register.
“Between 70-130 is the average blood sugar for a non-diabetic all day long,” Mrs. Johnson said. “His blood sugar was 821.”
For the next four days, Wyatt recuperated in pediatric intensive care, while his parents got a crash course in caring for a Type I diabetic.
A pediatric endocrinologist guided them through how to give insulin shots, and formulas needed to successfully regulate Wyatt’s blood sugar on a regular basis.
“You have to calculate carbohydrates, it was like a math test,” Mr. Johnson said.
Wyatt had heard about Type I, but had no idea what it would mean for his daily life.
“I didn’t understand. I knew it’d be severe but I just didn’t know what it was,” Wyatt said.
The Johnsons say a lot of people mix up Type I and Type II diabetes, asking them when Wyatt will outgrow it, which is not the case for him.
“People think you take a shot in the morning and a pill and your day goes on,” Mrs. Johnson said.
This new way of doing life was quite an adjustment, they said.
“The first few months, we carried around syringes, insulin, test strips, glucose tabs,” Mrs. Johnson said.
Mr. Johnson said Wyatt was getting six or seven shots a day, and finger pricks to check sugar levels every two or three hours.
A few months in, they got a bit of relief when they obtained a continuous glucose meter made by Dexcom, which has a needle that is inserted onto a different part of his skin every ten days, to check his glucose levels automatically throughout the day. The numbers are sent to the Johnsons’ cell phones via a secure app.
“It stops all the finger pricking,” Mrs. Johnson said. “It’s definitely a luxury … we are thankful for it.”
The finger pricking was also what made getting back into football hard for Wyatt at first.
“Wyatt was the long snapper. His job was to snap the ball, and the tips of his fingers were raw. He just hurt,” she said.
He jumped right back into football though, Mrs Johnson said, because he just wanted to feel normal again.
“Every quarter we’d take his blood sugar, he’d run by, stick his hand out to get checked. If it was low, he’d drink a little Gatorade,” Mr. Johnson said.
Wyatt’s sense of science helped him out in terms of showing an impressive amount of resiliency.
“He’s such a tinkerer. His brain wraps around this pretty well, and he took to it pretty quick with his ability to offer self-care,” his father said.
His mother said he’s really been able to comprehend things well and is quick to see the big picture.
It also helps that they have a great community supporting them.
Wyatt’s school nurse at his middle school is able to monitor his numbers if need be, but Mrs. Johnson said the nurse hasn’t had to intervene since he has proven himself capable to watch his numbers on his own.
This past summer, two youth workers at the Johnsons’ church offered to learn how to properly give an insulin shot and care for Wyatt’s needs, so he could attend a middle school camp with other kids.
“It was cool they were willing and wanted to learn,” Mr. Johnson said.
What was even better was a summer camp they found for kids with diabetes, called Camp Adam Fisher.
Mr. Johnson said all of the counselors there were either pediatricians, endocrinologists, or people with Type I Diabetes themselves.
“They said to let him have a week of being a kid, and for us to enjoy our vacation away from numbers,” Mr. Johnson said.
Another welcome distraction for Wyatt is his miniature beagle, Linus, who joined the family a few months after his diagnosis.
The Johnsons reiterated that they believe there is a true Type I Diabetes awareness problem.
“No one really knows … how severe it is,” Mr. Johnson said.
He referenced the T-Slim X2 Insulin pump that helps regulate Wyatt’s levels, and said it’s a device that can be adjusted down to a hundredth of a measurement in either direction.
“One miscalculation one way or another can kill someone,” Mr. Johnson said. “It’s scary.”
The Johnsons want to help other parents recognize the signs of Type I diabetes, and offer support to others in their situation.
The signs and symptoms of T1D include frequent urination, being unusually thirsty, fatigue, sudden onset weight loss, and sudden mood changes.
The mood changes they experienced with Wyatt were stark, and more than your usual pre-teen mood swings.
“I didn’t know him,” his mother said.
“It was ‘hangry’ times ten,” his father echoed. “Insulin is a hormone – it’s a withdrawal from hormones.”
Since Type I Diabetes is often hereditary, the Johnsons had their daughter tested as well, and she was not found to have any of the markers at the moment.
Free diabetes risk screenings are available at www.trialnet.org
Mrs. Johnson said she still sometimes feels bad for not seeing the Type 1 Diabetes signs that had been there for months.
“I carry a lot of shame for my lack of knowledge then,” Mrs. Johnson said. “Until you have a front row seat, you truly and genuinely have no idea all that it entails. It is a very, very humbling experience.”