Type 1 Diabetes has become a growing health problem with an increasing number of new early-onset cases occurring each year. In total, more than 200,000 Americans under the age of 20 have diabetes, with close to 20,000 children being newly diagnosed each year.
Diabetes
We spoke to Dr. David Weber, a pediatric endocrinologist at the University of Rochester, and Maureen Lathan-Thompson, a mother whose 2-year-old daughter, Gracelyn, has Type 1 Diabetes, to get different perspectives on treatment options and how to cope with a diabetes diagnosis.
What are the warning signs?
Dr. David Weber
Dr. David Weber
- Dr. Weber: The typical presentation is that of an otherwise healthy child that over the past several weeks to months has seen an increase in thirst and urination. Sometimes there is an associated weight loss or the child is feeling a bit sick. Often there was a recent illness that seems to push things over the edge.
- Thompson: Gracelyn was coming down with various viruses and fevers. Previously, she had been relatively healthy. Around Mother’s Day, 2015, she started gulping liquids and peeing profusely. Then, the concrete signs began appearing.
What are some of the difficulties that come along with a diabetes diagnosis?
- Dr. Weber: A diabetes diagnosis presents a huge lifestyle change for a family. Families must quickly learn how to test blood sugars, count carbohydrates, give insulin, and deal with the complications of diabetes (high or low blood sugars).
- Thompson: I worry every night when I go to bed that she’ll go too low and won’t wake up. When Gracelyn was originally diagnosed almost a year ago, we would check her 10 times a day. I now test her 4-8 times a day because we now use a continue glucose monitor to help us track her sugar levels. Perhaps the biggest challenge is that she can’t tell us how she is feeling.
Why does this affect some children but not others?
Gracelyn
Gracelyn
- Dr. Weber: Parents will usually ask us, “Why?” Unfortunately, we do not have an answer for them. Some children are born with a higher probability of getting Type 1 Diabetes, we know that to be true, but we do not know what actually triggers it. We always try to emphasize that there is absolutely nothing that the parents have done wrong, and that there is no lifestyle change they could have made to prevent the diagnosis.
- Thompson: Our doctors said Gracelyn’s diagnosis was genetic, and that she was destined to get it. The onset – something triggers it and they don’t really know what the trigger is, so we can’t control it either.
At what age can children learn safe insulin therapy?
- Dr. Weber: The goal of pediatric diabetes treatment and education is that, hopefully, when our children are grown up and ready to enter the adult world, that they are 100 percent self-sufficient. We want children to be a part of their diabetes treatment. Kids are going to do better if they have ownership over the condition. It starts out with wiping finger sticks with the alcohol swab while a parent will do a stick to check blood sugars, and goes on from there. Every child progresses at his own pace, but we encourage children to develop the skills necessary to care for themselves by the time they enter middle school.
- Thompson: The challenge for us is that she can’t tell us how she is feeling. She’s starting to understand a little more every day. A couple times she has warned us that something hurts. So she’s been able to speak about it more recently, and that’s going to be very helpful.
How has technology impacted diabetes management?
- Dr. Weber:Technology for managing Type 1 Diabetes is evolving so rapidly that it’s absolutely changing how we manage the condition. Insulin pumps were the first major technological breakthrough, allowing a continuous insulin infusion and eliminating the need for multiple daily insulin injections. More recently, technology has made it much easier to track a child’s blood sugar levels. Continuous glucose monitors have added in a layer of safety for children so that parents can watch out for low or dropping blood sugars on a monitor, smart phone, or computer. Some continuous glucose monitors now communicate directly with pumps to turn off the insulin if the blood sugar goes too low.
- Thompson: Gracelyn’s pump can be uploaded from the computer so her doctors can keep track of all of her data. We use software called MiniMed Connect, and it’s made a world of difference. The device sends alerts to my smartphone if Gracelyn’s blood sugar drops too low. I still worry, but I know that I have backup, as well as a litany of other data that’s regularly collected by the device.
Do you have any advice to offer to parents of children with Type 1 Diabetes?
- Dr. Weber: The thing I stress the most is that it is no one’s fault. I try to tell the family to look for the positives in the diagnosis. As a family, you’re going to learn a lot more about nutrition and think a lot about your health in ways you never would have before. It can be a benefit to the whole family. Not only is the child with diabetes going to develop healthier habits, but the family can, as well. I tell patients that diabetes is a life-changing event, but that they will still be able to do all of the things that they wanted to do before being diagnosed – participate in sports, go to college, go skydiving – whatever! We usually tell families that for the first few months after diagnosis life will revolve around diabetes and learning the ropes to treatment, but that after a few months, the diabetes will just fit into their life.
- Thompson: If you as a parent of a child with Type 1 Diabetes feel a constant fear that your child's blood sugar will fall to a life-threatening low in the middle of the night or that your child's blood sugar ups and downs will cause long term health problems, you are not alone! These thoughts play over and over again in my mind. I feel a continual level of anxiety and worry. Share your thoughts and fears with other parents, family, friends and your child's healthcare professionals. Reach out so your burden can be shared, lessened and maybe you can feel better and help another family feel better. Despite my concerns, my Gracelyn is a happy 2 year old who loves figure skating and ponies!
