HEALTH & MEDICINE
An ‘overwhelming diagnosis,’ Type 1 diabetes carries a steep learning curve, but kids can live the lives they’re already living.
BREVARD COUNTY, FLORIDA – Little kids go through growth spurts and dramatic swings in appetite – not to mention mood. A parent must develop a thick skin, and sometimes, temporarily, a red flag gets waved away.
When Megan and Billy Muir noticed their son Liam was drinking an excessive amount of water one week in October, they didn’t get alarmed. He was otherwise happy, in school and occupied.
Saturday morning, the Muirs took a family bike ride, and it was then that his mother noticed her normally high-stepping bicyclist was peddling listlessly. “‘I’m so tired,’” he complained.
“And we were like, ‘C’mon, keep up, you can do this.’ We had no idea.”
But within a couple hours Megan and Liam were at their doctor’s office. They gave him a finger-prick blood test, saw the results, and sent him immediately to the Emergency Department at Health First’s Holmes Regional Medical Center.
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Liam was diagnosed with Type 1 diabetes. He does not process blood glucose (sugar), which feed his cells energy, without supplemental insulin. Type 1 diabetes is unlike its much more prevalent cousin, Type II – in Type 1, the body’s own immune system attacked the pancreas, which makes the hormone insulin.
Physicians are unsure why people get Type 1 diabetes. It could be genetics, but often new patients’ parents say there’s no family history of the disease. Scientists also suspect a virus that stimulates an immune response might be a trigger. About 1.9 million Americans, including about 244,000 children, have it.
While it can be diagnosed at any age, the most common ages at first diagnosis are kids 4 to 7 years old, and 10 to 14 years old.
Doctors and nurses told Megan and Billy Muir there was nothing they could have known that would have prevented Liam’s diagnosis.
“It’s nice that it’s nothing anyone did,” Billy Muir says. “It’s also bad luck.”
Parents of kids eventually diagnosed with Type 1 diabetes often have very similar stories of excessive hydration, excessive urination (even at night), weight loss and loss of energy and concentration. A trip to the doctor’s office often becomes one to the Emergency Room because kids are in diabetic ketoacidosis (DKA), which is a critical situation that can result in organ failure or worse.
A Crash Course
The Muirs stayed two nights in the hospital. An IV knocked Liam’s sugar count down, but much of the care dealt with “training us – how to do his injections, how to check his finger sticks, and how to do his math formula,” that is, adjust his insulin doses based on his carbohydrate intake at his most recent meal, Megan Muir says.
“The biggest thing parents need that we deliver is a diabetes team to work with you so you get up to speed fast,” says Caitlyn Ryan, a Physician Assistant to Omar Hudson, MD, in the Pediatric Endocrinology practice at Health First Medical Group.
A Type 1 diagnosis comes with a crash course on technology to monitor blood sugar, a tool to deliver insulin doses, and a new vigilance around carbohydrates. Today, Liam has a continuous glucose monitor that tracks his blood sugar continually and reports data to a handheld, wireless display. The Muirs keep a reusable “pen” that delivers insulin hypodermically (he gets three meal-based doses and one long-acting one at night). They count carbohydrates – the ideal is no more than 40 grams a meal – and do a lot of math.
“Math all day long. Counting carbs. Plugging it into his formula, adding it to whatever he was before he ate. Figuring out how much insulin he needs,” Megan Muir says.
A Support System
This adaptation takes support – emotional, clinical.
“We’ve never met a doctor and PA as caring and compassionate as Dr. Hudson and Caitlyn Ryan. The first two weeks post-diagnosis, we spoke on the phone with Dr. Hudson every single day to report Liam’s blood sugar numbers to ensure his insulin ratios were correct,” she says.
“His entire office staff has gone above and beyond to make sure we felt comfortable and confident we could handle everything that T1D throws at us.”
“And we have amazing friends and family, his school – he’s got a great school nurse – and all of that combined really helps him to be strong.”
One of the people the Muirs have met is Catherine Metzinger, a nurse and Certified Diabetes Care and Education Specialist at the practice. She specializes in the technology that manages Type 1 diabetes, the practice of diet and carb counting, and the emotions that follow all of it.
“We’re here to help guide but also help comfort along this journey, because this is a journey, and as a journey, as you go, you learn. And as you learn, you get more comfortable, and your child gets more comfortable,” she says. “It is going to get better. It is.”
Courage and Technology
The Muirs have been impressed over the last few weeks by their son’s courage.
“He’s braver than us,” Megan Muir says. “Over the two months that we’ve been dealing with this, it’s been very rare that he’s gotten annoyed or complained, ‘Why do I have to do this?’” Billy says. “His age helps, he trusts us so much, but it’s also his character – he’s just so with it.”
In the past, people with Type 1 diabetes gave themselves insulin injections much as the Muirs do today with a pen, but now there are insulin pumps that are connected to the body 24 hours a day, delivering precise insulin doses with the push of a button. The Muirs say they expect Liam to have a pump placed in the spring.
Researchers are studying ways to reverse Type 1 diabetes or introduce new therapies that rely less and less on insulin injections. Dr. Hudson says the most promising innovation will likely be “a mechanical cure” that still requires insulin but expands eating options significantly and responds to insulin needs automatically.
“I do see the age of disease-modifying agents coming,” he says. “This would not require the use of insulin, which would be dramatically better than what we have.”
What Parents Should Know
“Parents say this is a really overwhelming diagnosis,” Ryan says.
There are many different facets of Type 1 diabetes, from the lifestyle changes to the mechanics of managing it. Yet, it’s also a diagnosis that may not significantly change the trajectory a child is on, depending on how they adapt, and what they dream of doing.
One of the most famous Type 1 diabetics is Mark Andrews, the Pro Bowl tight end for the Baltimore Ravens.
“Even though it’s overwhelming, we are here. We support you. We are in your corner helping you and your kid,” Ryan says. “Your kid will do all the things they want to do, they’ll just be managing their diabetes.”
Megan Muir’s advice is to lean into all the support made available. She’s begun going to a parents’ group for kids with Type 1 diabetes.
“We count our blessings,” she says. “Life just takes a lot more planning and monitoring right now, and it always will. Technology is getting better and better. Life will become easier,” Billy Muir says. “He is still himself.”
If you are concerned about your child or yourself, see a healthcare Provider. To schedule an appointment at Health First, visit HF.org, or call 321-434-3131.
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