/ by UK HealthCare
At 5 years of age, Max Middleton is 40 pounds of pure childhood enthusiasm, with a zest for life and a passion for WWE wrestling. In corner two, his arch nemesis, Type 1 diabetes. Big sister and sidekick, Kara, 9, has been fighting alongside Max since she was diagnosed with Type 1 at age 5. One of their biggest fans, Dad, JC, is also their coach, mentoring them from his own life experience with Type 1 diabetes, diagnosed at age 29.
Mom, Lisa, manages it all, ensuring that everyone has what they need to win a good, clean fight.
In truth, the Middleton family is like any other: school, work, sports and family trips. The only difference is that Max, Kara, and JC have to take extra breaks for snacks or a dose of insulin. “At our house, it’s almost like I’m the unusual one,” said Lisa, who is the only one who does not have diabetes in her family. “But one of the hard things can be that they are so normal and do everything normally. It’s easy to forget that it’s actually a serious disease and you really have to be careful. A lot of that is the behind-the-scenes work on our end.”
Achieving ‘normal’ with diabetes
Most people see a 5-year-old boy playing with his WWE action figures or hitting a grounder at a tee-ball game. They see a 9-year-old girl serving the volleyball or practicing equitation in her horseback riding lessons. They see a software engineer finishing a 40-mile bike ride, or they see a family taking pictures with Mickey at Disney World.
What most people do not see is the constant mindfulness of carbohydrate ratios and insulin dosages, circumventing the dangers that can come with a common stomach bug, or monitoring the normal but frequent blood-sugar fluctuations children can experience.
“We’re sometimes up every half hour to an hour to keep an eye on the kids overnight,” Lisa said. “They never do the same thing either; one might be high and need insulin and one might be low and need food. JC is super supportive, and he and I alternate getting up every night to check on the kids and dose them if they need it. Neither of us has slept more than a couple of nights in a row in almost four years.”
Barnstable Brown team offers critical support
Whether Lisa and JC have a concern about abnormal blood sugars, one of the kids gets sick, or they just need comfort, the team at the UK Barnstable Brown Diabetes Center is there to support them. “Our health care team has been critical,” Lisa said. “They respond to emails immediately, they are available for any issue, and both Angela and Deb always reassure us that we’re doing a good job.”
Every three months, Max and Kara see Deb Howard, APRN, MLDE, CDE, and diabetes educator Angela Hepner, MEd, MLDE, CDTC, CDE, LD, RDN. “We download their pumps and their glucose monitors to see how the last three months have been going and then make insulin dose changes if we need to based on the data or their growth,” Howard said.
In between visits, Hepner is there for whatever the Middletons might need. “I spend a lot of time on email or the phone adjusting blood sugar doses or managing the disease through an illness,” she said. “Sometimes it’s a matter of dealing with insurance companies and trying to make sure they have everything they need or are not having to pay for duplicate or triplicate of things when one would do for all of them.”
The overarching goal is to help the Middleton family feel empowered to live life as normally as possible and not let diabetes be a barrier to anything. “Angela and Deb are really important for handling those things that I just can’t fix on my own,” Lisa said. “It seemed like at one point or another, both my kids’ insulin dosage requirements skyrocketed overnight. I was nervous and thought something was wrong, but Angela and Deb said it was normal and expected, and they showed us how to fix it. They really have become like our extended family.”
Don’t let diabetes take anything away
JC learned long ago that managing Type 1 diabetes means much more than carbohydrate calculations and timing of insulin dosages. It is about perseverance and a positive mindset.
“Don’t give up, because if you do, that’s the first step to letting diabetes win,” he said. “Don’t let diabetes take something away from you. For me that was cycling. I can go for a 30- to 40-mile ride and come back and all my stress is gone.”
Cycling is also integral to keeping JC’s blood sugars balanced. He and Lisa have raised their kids to understand the importance of and enjoy staying active. Kara has horseback riding and volleyball. For Max, it is basketball and playing with his WWE wrestlers.
“He has channeled this into a positive,” JC said of Max. “He is constantly trying to ‘fight’ with me, his sister or one of his wrestling dolls, and jumping off the furniture. If you didn’t know he was diabetic, you would never guess it.”
The Middletons’ positivity, dedication to a healthy lifestyle and determination to live life on their terms are all part of taking responsibility for their Type 1 diabetes, which is essential, JC said.
Embrace technology, empower yourself
Technology makes it a lot easier to handle the responsibility of diabetes. For the first six months after Max’s diagnosis, regular finger sticks monitored his blood sugar and needle injections delivered the insulin his pancreas is unable to produce. It added a lot of hardship to managing the disease in a 20-month-old child who was unable to understand what was happening.
Today, both kids use an insulin pump and a Dexcom continuous glucose monitor. The Dexcom records their blood sugar levels every five minutes and sends an alert to Lisa and JC’s cellphones if those levels are off-balance.
“My children got the pumps first, and I saw that they were able to continue to do everything and didn’t have to carry with them a bag that’s got insulin, syringes and alcohol swabs – all of this extra stuff that I was packing with me all of the time,” JC said of the decision to use an insulin pump himself. “With a pump, it’s all self-contained; it gave me back so much freedom.”
Insulin pumps mimic the pancreas by delivering a continuous low dose (basal rate) or a short-acting higher dose of insulin as needed through a catheter under the skin. Dosages are easy to adjust in order to accommodate the kids’ varying activity level, behavior changes and food intake. JC, Kara and Max rotate their pumps to a new position every three days, significantly decreasing the number of uncomfortable needle sticks.
“The pump isn’t for everybody; some people do very well on the injections,” Hepner said. “But for some of our younger kids or really small body-type kids, we just can’t get the dosing otherwise. With the pump, we can dose in hundredths of a unit rather than half- or whole-unit increments, so that makes a big difference in being able to meet their needs.”
The kids are OK
Hepner and Howard have supported the Middletons from the day Max was diagnosed at Kentucky Children’s Hospital, offering guidance through the initial learning curve, answering every question, assuaging every fear and filling in the gaps when motivation runs low. They have helped JC, Lisa, Max and Kara navigate every down and celebrate every up.
“Diabetes is a lot of work, and there are times it’s not fun and it’s frustrating, but the good news is your child can be healthy and normal,” Hepner said. “You just have a few extra steps to make that happen. Kids are resilient. If you give it all you’ve got, they’re going to be OK.”
Kara is OK. “I can still do everything other kids can do even though I have Type 1,” she said. “I have really nice friends at school. I love sports like volleyball, soccer and horseback riding. I like watching Netflix. I like playing with my brother.”
Max is certainly OK, too. “Miss Deb and Miss Angela are super nice,” he said. “I like that they work there [at Barnstable Brown]. I can run around and play with my guys [WWE action figures]. I like that we eat sugar and defeat sugar. When I’m high, I dose. When my Dexcom beeps, I’m too low, so I eat. When I crash, I eat lots and lots of candy.”
The Middletons, Hepner and Howard work as a team toward one goal: healthy, happy children who feel confident that they can live their lives to the fullest, and that no matter how many rounds they go up against diabetes, they always come out the champions.Read more Making a Difference »