Diabetes’ First Day of Preschool

Starting preschool can be scary, but starting preschool with diabetes is wake-up-at- 2:00a.m. in-a-sweaty-the-apocalypse-is-nigh-dead-panic-scary. Preschools vary, but the keys to the best possible experience of diabetes at preschool are education and communication. This means education of the staff, the children, and the parents of the children.

Obviously, education of the staff must be the most thorough and detailed. When our son was diagnosed he was in an in home daycare, and my husband and I split time with him at daycare  for his first week back, and then came during nap time to teach the staff how to draw insulin in a syringe, then use a pen, and then use a pump. We transitioned through all these in a quick three months. When our son started at a preschool on campus where we work, we coordinated with the director to train the student workers and staff as part of their training hours. We brought Henry’s dinner with us and demonstrated counting carbs, checking blood sugar, and then bolusing for the carbs he ate right in the training meeting. Picnics make all meetings better.

We brought Rufus, the JDRF bear to preschool, and we purchased copies of the Pink Panther Understanding Diabetes books for the teachers and classroom. Lastly, we wrote a letter to be sent home with the parents. Luckily, the school Henry’s attends does not celebrate birthdays with food, but I was very touched when a few weeks after school started we attended a birthday party  for one of his friends from school and discovered a plate of cheese, a bowl of goldfish, and a low sugar cupcake just for Henry.

superhero with diabetes at super preschool

superhero with diabetes at super preschool

Here’s a version of the letter we’re sending home this year. If this letter works for you, adapt it and take it to your preschool.

Dear _____________________,

On March 6, 2014 our 3 ½ year old son, Henry, was diagnosed with type 1 diabetes. Type 1 diabetes is an autoimmune disease. Nothing Henry ate or did gave him this disease, and type 1 diabetes in not contagious. Type 1 diabetes is an autoimmune disease. For the rest of his life Henry will take insulin injections, monitor what he eats, and test his blood glucose with finger pokes.

Because your child/ren are at pre-school with Henry, they might see Henry get his blood sugar checked, receive insulin, or hear talk of carbs. Henry wears an insulin pump, usually around his waist, and other children are often curious about his “phone” or “iPad,” which is really his pump.

As Henry’s parents, we’d like to take a moment to share with you how our life, particularly Henry’s, has changed. We have to count all the carbs Henry eats and give him insulin to cover the carbs. Basically Henry’s blood sugar is measured, he is then given insulin remotely through a pump and meter-remote, then he eats. His blood sugar is checked two hours post meal. We repeat this every time he eats. Henry wears a pump 24 hours a day that delivers insulin through a needle that is subcutaneous. He also wears another device (continuous glucose monitor (CGM)) on his back or abdomen that measures and transmits an estimate of his blood glucose.

He can do everything any other kid can do, but it just takes extra planning and monitoring. For example, what can’t happen without planning is for Henry to be given a cupcake at a birthday party without insulin. He can still eat cake and cupcakes at birthday parties, but it requires planning and extra carb counting. We always have to know how many carbs he eats and when because he needs insulin for this.

We want Henry to participate in every opportunity, and we want him to feel included, but because of type 1 diabetes, this means we have to plan more carefully. We don’t expect any family to change how they choose to celebrate his or her child’s birthday at preschool. Our purpose of this letter is to inform you. Deli frosted cupcakes make tight management of blood glucose difficult. Angel food cakes, some cheesecakes, and pound cakes tend to have lower carbs than other cakes. Reduced sugar yogurts and popsicles are also good treat alternatives. “Free foods” are foods without carbs like sugar free Jell-O or cheese sticks.

Vomiting from tummy bugs and fevers from colds are particularly troublesome because the stress of the illness raises blood sugars and produces ketones in people with diabetes. What is a regular cold for a kid without diabetes means careful monitoring and potential hospitalization for a child with diabetes. Last year, Henry was in the hospital twice as he battled a tummy bug with type 1 diabetes.

While Matt and I wish this road were different for him, it isn’t, and our job is now to normalize a life with diabetes for Henry, and to be his advocate. We’re sharing his diagnosis with you because he is so young we are the ones managing his care; we feel the more people in our community who know, it increases the possibility of better management. Of course, we’re open to questions you have as we learn together how to keep Henry healthy. A good website is http://www.diabetes.org and http://www.jdrf.org. He’s a healthy four-year-old, who also happens to have diabetes.

With Love,

(shared email and cell phone)

Melia’s Diagnosis Story

Diagnosis stories are powerful teaching tools that help people learn to recognize the symptoms of Type 1 Diabetes. For the person diagnosed with Type 1 Diabetes, a diagnosis is the day his or her life changes and goes forward. Semisweet is sharing Melia’s Diagnosis Story in her own words.

Melia, diagnosed at Age 9, February 15, 2003

Usually when I am asked how I was diagnosed with type 1 diabetes, I tell the short and sweet version, “My brother had the flu then I got the flu. He got better and I didn’t.” This is followed by the onslaught of how I got diabetes. “Did you have a bad diet? Were you overweight? Is that the good or bad kind? Does your family have a history of diabetes?”

No, no, there is no good kind, and still no. In fact, when I was diagnosed T1D was not really considered genetic yet. Today, research suggests otherwise. The best way to describe it is to say that there is something in my genes that was waiting to be triggered. I just happened to get the right bug at the right time, which made my immune system turn on itself and attack my pancreas. If I hadn’t gotten sick those genes may have never been triggered, or it could have just been prolonged. So, to make the short, sweet story not so sweet here is the long version:

Melia one week before diagnosis

Melia one week before diagnosis

On Valentine’s Day I lay my head on my desk as my classmates dug into their candy bags and Valentine’s cards. After school my parents packed my brother and me in the car and we left for my grandfather’s birthday celebration in Chicago. The drive took an extra 2 hours, because I had to use the restroom so often. We sat in a fancy restaurant for a late dinner. I made my first trip to the restroom before the drinks arrived. We ordered our food, I drank all my water as fast as I could and left for my second trip to the restroom. A few minutes later I went back for the third time. This time I felt nauseous. My parents wondered what was happening to me, but I insisted I was fine. We had only just begun eating when I was sick at the table. The next part I remember is my mother putting me in the bathtub at my grandparent’s house where she noticed I’d lost an unbelievable amount of weight. Immediately, I was taken to the E.R. One look at me and the doctors knew what was wrong; they didn’t hesitate to admit me. I was diagnosed with Type 1 Diabetes on February 15, 2003. My A1c was 15 and my blood sugar was 1024. The doctors were shocked that I was coherent because, as I would find out later, I should have been comatose. I was in 4th grade.

The next 5 days were spent in the Intensive Care Unit, working toward lowering my A1c. From there I was transferred to the hospital where I began learning how to check my blood sugar, take insulin, and count carbs. I gave myself my first injection. I started on NPH and learned the “clear to cloudy” rule of mixed insulin injections. I would start Humalog and Lantus when I went home. As I began learning the routine that would become my lifeline, everything from the previous few weeks also began making sense. I showed all the symptoms of Type 1 Diabetes: increased thirst and hunger, frequent urination, weight loss, lethargy. Even though my mom had taken me on several doctors’ visits my parents had continually been told it was merely a virus, a cold, the flu. My brother had gotten over his flu symptoms, but the antibiotics made no difference for me.

By the end of my week in the hospital, everyone could tell that I was feeling like myself again when I intentionally triggered the floor lock down with my hospital I.D. bracelet.

After that week I was released from the hospital and 3 days after that went home to Iowa. The first trip I made to the grocery store took all day. Tasked with finding low carb snacks, my parents and I read every last nutrition label in the store. Sugar free Jell-O, string cheese, gold fish, and celery. This would become the usual for me throughout all of school. I’ve eaten enough celery in my life to never want to look at a stalk again. Slowly, things returned to some kind of normalcy. I went back to school and I was getting healthy one day at a time. Every day is still a learning experience.

Of T1D, I will say this: There is an immense list of things I’ve been told I can’t do. I disagree with that list. I survived college. I know how to carry 6 months of insulin supplies on a plane. I’d like to get my scuba certification. My mother taught me that I was a kid first. So I have never let my diabetes stop me. I refuse to let it. I am not a diabetic. I have diabetes. It is my disease. I have diabetes, it does not have me.

Newly Diagnosed Reading List

Speaking to an audience of First Timers at Friends for Life 2015 Diabetes Dad, Tom Karlya, said “Diabetes is an unfair and tough disease, but knowledge is the equalizer in diabetes.” Knowledge is the equalizer in diabetes. Between blood glucose checks every two hours, being a parent, and teaching, it took me a few months to get through these books, but the history, research, and practical advice helped me cope with our son’s diagnosis and more importantly, find good avenues of care for him.

Diabetes Rising by Dan Hurley

After I meet with another parent whose child has diabetes, one of the first pieces of advice she gave me was to order Diabetes Rising. This book is an advanced primer on the history and current research as it pertains to T1D. Divided into three main sections, the first section chronicles the history of diabetes mellitus and focuses on the alarming rate at which both type 1 and type 2 is rising. The middle section covers hypotheses about the etiology of type 1 and the last section covers various treatments and research for a cure. The author, Dan Hurley, is a reporter, and a person living with T1D. This is the book I pass along to family and friends who want to learn more about diabetes.

Breakthrough: Elizabeth Hughes, the Discovery of Insulin, and the Making of a Medical Miracle by Thea Cooper and Arthur Ainsberg

The book swiftly moves through the history of diabetes and its lack of treatment before the modern era. I think this book is one part biography of William Banting and one part case study of Elizabeth Hughes, one of the first American patients to be given insulin after its discovery in 1921. The book covers the early experiments of Banting and Best and follows the story of insulin to the Lilly Corporation and then the Noble Prize.

Cheating Destiny: Living With America’s Biggest Epidemic by James S. Hirsch

Like Diabetes Rising, this book looks at the history of diabetes, hypotheses, and current (published in 2009) research. What makes this book differently is the deeply empathetic voice of the author, James S. Hirsch, who is a person living with T1D. The book opens with the author’s three-year-old son’s diagnosis of T1D.

Think Like a Pancreas by Gary Scheiner

Thankfully, the author, Gary Scheiner, a CDE and person living with T1D, acknowledges no one can really think like a pancreas. However, if it’s possible to even replicate one iota of what a pancreas does, it would be with the help of this book. This book covers how to establish and test basal programs, a wealth of information for counting carbs and covering with boluses, detailed nutrition information, and other elements that affect blood sugars. Sitting down with this book is like sitting down with a nutritionist and CDE for a very advanced lesson on artificial metabolism.