For 4-year-old Carson, type 1 diabetes is just part of his day.
Moving a chair over to his kitchen counter, four-year-old Carson Lundquist hops up and grabs a bag of Goldfish snack crackers.
“You’re hungry today, aren’t you?” asks his mom, Allison.
“I’m a hungry hungry hippo,”Carson replies, laughing.
His mother then admonishes him that his insulin pump hasn’t yet been programmed for him to start popping crackers into his mouth. It’s a small thing, something that nearly every child in the world does without a care, something nearly every mother is happy to see- a growing child getting himself a snack and showing his independence.
But for Allison, it’s something she and her husband Joel have to monitor very closely. Carson’s health depends upon it. That’s because he has juvenile diabetes, known as type 1 diabetes, and everything that goes into his body can potentially have a negative effect on his immune system, as well as his kidneys, brain, and other vital organs.
Type 1 diabetes is an autoimmune disease which occurs when the pancreas stops producing insulin, the hormone that allows us to get our energy from food. The body’s immune system attacks and destroys the insulin-producing cells in the pancreas, called beta cells.
Unfortunately, there is nothing a person can do to prevent type 1 diabetes, and there is no cure at present.
According to the JDRF, formerly known as the Juvenile Diabetes Research Fund, more than 15,000 children and 15,000 adults in the U.S. alone are diagnosed with the disease annually; that’s approximately 80 people per day. JDRF shortened its name because there are many, many adult survivors of the disease, something that wasn’t true a few decades ago.
The disease strikes both children and adults at any age. It comes on suddenly, causes dependence on injected or pumped insulin for life, and carries the constant threat of devastating complications. As many as three million Americans may have type 1 diabetes, and the rate of incidence among children under the age of 14 is estimated to increase by 3% annually worldwide.
For Carson, his battle with the disease began shortly after he turned three. That was when his parents began to notice something wasn’t right. Their toddler was drinking all the time, for one.
“He would drink a bottle of water, then say ‘more’; he was just always thirsty,” recalled Allison. “And then he was peeing everywhere. We couldn’t potty train him, because he would fill his diaper, which is common with children who have diabetes.”
Allison did a Google search for the words “excessive thirst in my 3-year-old”, and the first thing that popped up was type 1 diabetes. She decided to wait through the weekend and then make an appointment with his pediatrician. On Monday, the babysitter called her at work and said Carson was once again urinating everywhere- she had puddles in her carpet. Allison called the doctor’s office, and told them what was going on, and was told her son could be seen in a few days.
“And the more I thought about it, I couldn’t let that ‘mommy gut’ thing go, so I called them back and said, I think he really needs to be seen today, I think he may have diabetes,” Allison said. The nurse asked her why she thought that, and when she explained, they agreed that Carson should be seen right away.
At the doctor’s office, the nurse checked Carson’s blood sugar, but wouldn’t tell Allison what the test result was. That was something the doctor would have to do, she said.
“And that was a red flag,” said Allison.
The normal range of glucose in the blood for non-diabetics is 135 to 140 milligrams per deciliter after a meal, and can as low as 70 or 80 if one hasn’t eaten for several hours. 180 isn’t out of the normal range for a type 1 diabetic a couple hours after eating, but if it gets too high, say over 200, the kidneys can’t reabsorb the glucose and it begins to have negative effects on the body.
Carson’s blood sugar was off the meter that day in the doctor’s office, on a device that could read levels up to 600.
The doctor diagnosed him with type 1 diabetes, and directed the family to admit Carson to the Children’s Mercy Hospital, where he would spend some time in the intensive care unit.
Allison was new to the disease, and now, she was scared.
“I think I didn’t get how serious it was,” she said.
Over the next three days, she and Joel got a crash course in caring for Carson by managing the disease, learning how to count carbohydrates, how to administer insulin, and how to check blood sugar, as well as what to do in case of emergency lows and highs and how to recognize symptoms of those glucose swings.
Fast forward to today. Carson is doing well, and is just as adventurous and playful as a typical 4-year-old. He gets 10 to 12 finger pricks a day to check his levels -more if he’s sick- and he’s proud to show you which finger he prefers to to get poked.
“Because it’s always bleeding!” he says jovially.
He’s also fine with showing off his insulin pump; a device roughly the size of a smart phone which is programmed, by his parents and preschool teachers for now, based off of what he’s eating and the carb count. It’s a part of Carson’s daily life and he is happy to share. A tube leads from the pump to a needle in his backside. The blood sugar monitor communicates with the device to better address fluctuations in glucose levels.
The one thing Allison said she often feels she has to explain to people is that the disease isn’t something she and her husband gave to Carson. It’s not something a person develops based off of diet or environmental factors.
That being said, Allison admits a little paranoia when it comes to Carson’s little sister, Tori. Despite the low likelihood of two siblings having the disease, the 1-year-old has had her blood sugar checked a few times before. And she is, fortunately, well in the normal range.
“I know it’s rare, but I get nervous. I get scared,” she said.
Carsons’ blood sugar runs all over the place, which Allison admits can be frustrating. If he has a growth spurt or gets ill, it goes haywire. It’s often high after breakfast, due to the body’s hormones, which are active in all of us in the mornings, during the process of waking us up.
And the disease can be strangely unpredictable in various foods’ effects on the body. A banana gives him higher blood sugar than a piece of cake. Milk, that children’s staple, “is horrible,” Allison says, adding that he only gets it on special occasions. And Carson, like most kids, loves milk. Yogurt and cheese are Allison’s dairy alternatives for her growing boy. And vitamin supplements.
She wakes up each night to check his sugars, which isn’t easy, but she would feel guilty if she didn’t do it.
“It’s like having a newborn all the time. I may not sleep ever again,” she joked. Carson, at least, sleeps through it.
She said she doesn’t know how people without insurance pay for treating the disease; out of pocket expenses are a couple hundred dollars each month even with good insurance. Test strips, for example, are $1.50 a piece. Insulin is expensive, as is the pump, which has lots of parts.
Allison is especially thankful for the support she has received from Carson’s preschool, Duncan Academy in Grain Valley. The family lived in the Wellington School District at the time of his diagnosis, and were concerned about how things would go for Carson once he entered kindergarten, especially on long bus rides, with potential fluctuations in Carson’s levels and no one to monitor him..
When their previous babysitter didn’t want the responsibility of caring for Carson due to his health concerns, they began looking for child care and found Duncan.
“We moved here because we found Duncan Academy, when he was diagnosed,” Allison said. “They took it on like a champ, and do the blood sugar checks, and now they have three kiddos with type 1.”
When Carson goes to kindergarten, he will be able to attend the Academy before and after school since he’s in the district, which is comforting to Allison, because his bus ride won’t be too long. The school district will also work with the Lundquists to develop a care plan. The district already has several children at the schools who have type 1 diabetes.
“It will mean small things, like making sure he eats all of his lunch if he’s been dosed for it, so he’ll have a program based on what he eats,” Allison said.
At some point, Carson will begin to take the responsibility to do his own blood sugar checks; some 7-year-olds are able to do that.
Another area where Allison credits Duncan Academy is their support with the JDRF Walk to Cure Diabetes. Last year, they formed a team, and the preschool helped them to raise over $5,000.
“They not only sponsor our team, but recently sold JDRF paper sneakers for $1 each,” Allison said. “They raised $522 for JDRF. They have sponsored our lemonade stand and bake sale this year, as well, bringing in over $500.”
Her goal as a parent is to find a cure; Allison points out that JDRF research led to the development of the insulin pump. She and millions of moms, dads, and kids hold out hope that research will continue to find ways to fight, and eventually wipe out, this dangerous disease.
The 2012 Walk to Cure Diabetes & 5K will be on Saturday, October 6, 2012 at the Truman Sports Complex. Businesses and individuals are encouraged to help support this worthy cause to help find a cure.
Participants may arrive beginning at 8:00 a.m., and the Walk/5K begins at 9:00 a.m.
Visit www.jdrf.org/kcwalk5k for more information.
By Christopher Fischer | The Pointe Staff