According to the American Diabetes Association, Nearly 26 million children and adults in the United States have diabetes. Diabetes cases are up more than 100 percent in 18 U.S. states.
Diabetes is a group of diseases characterized by high blood glucose levels that result from defects in the body’s ability to produce and/or use insulin.
For too many Americans, diabetes is thought of as minor hindrance rather than a life-changing disease. Many parents and children know differently. From the devastating discovering to the daily food and insulin management, each family navigates the journey on their own. I hope my Pre-K Success audience becomes more informed about childhood diseases and what other parents are experiencing by reading these monthly awareness interviews with parents.
November is American Diabetes Awareness Month. In an effort to raise awareness about type 1 diabetes, Julie Beck, mother of four, shares her personal story about their family’s journey with her youngest daughter Katie.
Denise: How did you discover Katie had Type 1 diabetes?
Julie: On the afternoon of April 7, 2010, we found ourselves watching our 3 year old daughter lifting off a heliport pad in a Life Flight helicopter bound for Loma Linda Children’s Hospital in Southern California. This surreal moment was something you only see on television shows, not in real life – not to our family. Thoughts raced through my mind, “How will we find her at the hospital,” “How fast can we drive the 80 miles to get to her,” and “What if the helicopter crashes?” It felt like utter devastation.
Reflecting back to the month leading up to that fateful day, I can see all the symptoms so clearly now. It was textbook: She was always tired but had stopped napping many, many months earlier. During her very random and frequent naps, she would also have accidents and wet herself. She was thirsty all the time, which I just chalked up to the fact that we were living in the desert at the time. Who isn’t thirsty when you live in the desert? And, she had to go to the bathroom all the time. if you’re thirsty all the time, then, of course, you have to go to the bathroom all the time.
Two weeks prior to her going into Diabetic Ketoacidosis (DKA), I was really sick with walking pneumonia; it was pretty bad, so when Katie started to exhibit signs of increased lethargy, a decrease in appetite, and fussiness, I chalked it up to her catching whatever I had, and didn’t think too much about it.
Then it dawned on me that maybe she had a urinary tract infection. Her constant thirst and needing to go to the bathroom – I didn’t know – but thought it couldn’t hurt to take her in and get her tested. After a urine test result came back, the doctor told me that it could be a UTI or that it could be diabetes-he would refer us to the lab where Katie would get a full work up. I really didn’t know what to make of that information and I think our pediatrician was being very cautious until further lab results were conducted.
That afternoon, Katie was very sleepy and couldn’t stay awake. When she did try to eat, she would throw up very soon afterwards. Again, I just thought she was sick with the flu or something. The very next morning, April 7th, around 9 a.m., I received a phone call from our pediatrician who might as well been talking in code, because I couldn’t understand a thing he said. What I did understand was, “Take Katie to the emergency room RIGHT NOW!!” I immediately called my husband at work and told him to meet us at the ER right away. It was all such a whirlwind.
And then – there we were…racing to Loma Linda, running in to the hospital to the front desk asking, “Where is the pediatric ICU?!”
Diabetes often goes undiagnosed because many of its symptoms aren’t alarming.
Denise: What is it like for your family managing Katie’s diabetes?
Julie: Katie’s diabetes care is a 24-hour responsibility for me to manage, as well as, to help educate her about her diabetes so that as she grows up, she will be very diligent in managing it on her own. All four of our children are growing up understanding how their food choices affect their bodies, but especially how carbohydrates affect their blood glucose. One of the most often asked questions we get is, “What can she eat?” I have learned that Katie can eat pretty much anything she wants but we always stress the importance of making healthy food choices and portion control. If there is a birthday party, she can have a very small piece of cake with most of the frosting scraped off.
In the beginning of her diagnosis, I stripped all the cupboards of practically everything because I was so scared to feed her anything. I thought I was going to have to feed her eggs, cheese and meat for the rest of her life – all the “free foods.” I didn’t understand that pretty much all foods have carbohydrates and that carbs turn into sugar. Who knew?? I didn’t.
After five days in the hospital, I told my husband that I needed to go to the grocery store by myself and re-learn a whole new system of grocery shopping. I was there for four hours and felt like I had never been in a grocery store in my life. I must have called my husband a half-dozen times to ask things like, “What are sugar alcohols?” “What is high fructose corn syrup?” And, “If it says sugar free on the packaging, then why are there carbs?” It was so confusing; I didn’t really know what to buy.
“And I remember looking at all of the other grocery shoppers and their carts, thinking it was all evil; food felt evil.”
Denise: What does a typical day look like for you and Katie?
Julie: The day starts with checking Katie’s “poke.” For some reason, checking her blood glucose level with a finger prick is called “checking your poke” in our household. Katie is also able to “check her poke” on her own, or one of her siblings can help her. We have a little jingle for when she pokes her fingers We sing it while waiting the five seconds to see what the number is:
“Katie and I chant, ‘Is it high, low, or right in the zone.’ Then the number appears and we find out.”
When her blood glucose number appears on the display screen of her monitor, I write it down in a weekly diabetes tracking journal. Then we decide what she’s going to have for breakfast and I log the number of total carbs she will eat at that mealtime. I administer her insulin (she’s on an insulin pump now) and then fix her breakfast right away.
About two hours later, she checks her blood glucose again and her number is logged. If she’s hungry for a snack then we measure her snack, count the carbs and administer insulin to cover the carbs. Lunchtime seems to come quickly and the routine of finger pricks, insulin, log book, continues for lunch, the afternoon snack, dinner, before bedtime, midnight and again at 3:30 a.m.
In the beginning, figuring out the meals was all consuming. It was an all day, every day, exhaustive responsibility. I’ve now learned to manage it with a little more ease, although I feel like I’m always learning something new. Food is still front and center, but not evil by any means.
Can Diabetes be Prevented? Understanding the difference between Type 1 and Type 2 Diabetes.
Denise: What can parents take away from your experiences?
Julie: From the beginning, we’ve made Katie’s diabetes management a family mission. We forced the hospital to allow our three other children to be a part of the diabetes and nutrition training classes that we had to attend before being discharged from the hospital. My husband was adamant about our children being involved in this journey…it wasn’t just Katie’s journey to make, but that her siblings would grow up having a full understanding about her care, food, nutrition, carb counting – and that they would be able to care for her and administer her insulin should she ever need assistance…now and in the future.
One of the best things that helped me get through the first few months was having access to another mom with a child who had diabetes – someone who had “been there, done that.” My pediatrician put me in touch with this mom who had an older son with diabetes. I called upon her for information and insight quite frequently. The information she was able to give me was invaluable. I really appreciated having her just a phone call away.
“Diabetes isn’t the end of the world.”
We have always taken the attitude that this is the way it is now and we are going to tackle it together. We always include Katie on the decisions of where she would like to get her insulin shots and we never get mad at her or make her feel bad about it. No matter how tired I am, no matter how guilty I have felt, no matter what – this was never her fault…it was just something that happened.
If anything ever had to happen to our children, then we will take diabetes any day over some of the other things that some families have to go through with their children. Being one of those families that makes routine visits to children’s hospital to meet with the diabetes doctor, you certainly see first-hand some of the medical things that parents are going through with their children. It can be heartbreaking.
“Katie has taught our family about sincere patience and compassion.”
Katie is a real angel in our family. She shows all of us how to be better people every day; how to be more patient, how to be kinder to each other, how to be more compassionate; and how to be tougher. The things she has had to endure in her young life are things that most people won’t encounter in their entire lifetime. She’s a tough little girl…and so brave.
Julie and I encourage you to:
- Pay attention to odd behavior and have your child tested if you suspect it may be related to something more serious.
- Positively involve your entire family in your child’s diabetes management.
- Read the highlighted links in this blog to learn more about how to help eliminate and prevent certain types of diabetes.
- Please share your story and any helpful information for other parents.
“Type 1 diabetes is usually diagnosed in children and young adults, and was previously known as juvenile diabetes. In type 1 diabetes, the body does not produce insulin. Insulin is a hormone that is needed to convert sugar, starches and other food into energy needed for daily life. Only 5% of people with diabetes have this form of the disease. With the help of insulin therapy and other treatments, even young children with type 1 diabetes can learn to manage their condition and live long, healthy, happy lives. If you have or know a child who was recently diagnosed with type 1 diabetes, you may also be interested in our book, Guide to Raising a Child with Diabetes, 3rd Edition.“ Diabetes.org