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5 Things I Wish You Knew About My Daughter’s Type 1 Diabetes

Here’s what living with diabetes is really like.

Photo credit: Courtesy of Julie Shapiro

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Throughout December several years ago, my husband Neil and I would look at each other and wonder what was going on. Our beautiful, vivacious 7-year-old didn’t look “right,” but we couldn’t put a finger on why.

Ellie was getting so thin, despite eating like a linebacker. She played a lot of soccer, so we weren’t overly concerned when she started to feel sluggish. But one evening, Ellie left the bathroom door open and as I walked by, I heard the force with which she was urinating—it didn’t seem possible for a 7-year-old to have that much urine come out so fast. It was terrifying.

Ellie, three days before diagnosis. Brittle hair, sunken face, so thin…Looking back, it breaks my heart | Photo credit: Courtesy of Julie Shapiro

I told my close friend Jodi my concerns and she tried to put our minds at ease. But a few days later, when I went to pick up Ellie from a play date at Jodi’s house, I knocked on the door and life changed in an instant. “You need to go to the hospital right now,” she said. “Neil is on his way.”

Jodi has type 1 diabetes (T1D). After hearing our concerns, she tested Ellie’s blood sugar to give herself peace of mind, not expecting to find anything out of the ordinary. She wound up diagnosing Ellie with the disease.

The next few hours were a blur. So many blood tests, IVs, questions from doctors and lots of crying from our poor child who couldn’t understand how she had gone from play date to patient so quickly.

After a long first day of diabetes boot camp at Cohen Children’s Medical Center | Photo credit: Courtesy of Julie Shapiro

They kept the three of us in the hospital for three days for what we refer to as diabetes boot camp—while the medical staff worked on regulating Ellie’s blood glucose levels and developing an insulin regimen, we were taught how to keep our daughter alive moving forward. Now it’s just our lives.

Ellie changing the site of her insulin pump—a mechanical device that delivers insulin all day, every day | Photo credit: Courtesy of Julie Shapiro

But knowledge translates into power (and safety) for people with type 1 diabetes. So here are the 5 things I wish you knew about my T1D daughter:

1. You don’t get type 1 diabetes from eating too many sweets

I breastfed my daughter for the first six months of her life. When she began eating solids, I made her food from scratch, spending hours boiling chicken and steaming peas and carrots before blending them into pureed wholesome goodness. We held off on giving her a sweet treat until her first birthday—a few bites of cake. I’ve always been quite neurotic about the food I give my kids because I take my job as chief nutrition officer of the family quite seriously. So nobody was more surprised than I when we learned that my daughter’s blood sugar was so high, it wouldn’t register on the hospital’s blood glucose meter.

According to Margaret Pellizzari, certified diabetes educator and program manager for Pediatric Diabetes at Northwell Health’s Cohen Children’s Medical Center, T1D is an autoimmune disease. For reasons that elude the experts, the immune system attacks the insulin-producing cells in the pancreas and destroys them. “Because insulin’s job is to signal muscle, fat and liver cells to absorb glucose from the bloodstream for energy,” Pellizzari explains, “when there is not enough insulin left, the body begins to burn fat as its main source of energy.” During the time when my daughter first developed the disease, but before she was diagnosed, there was a day when she ate four slices of pizza in one sitting. This might seem like nothing to the mother of a teenage boy, but my daughter was only 7 and growing thinner by the day. It was our first indication that something was wrong. (The others included thinning hair, decreased energy, frequent urination and a sour fruit smell to her breath.)

But too many sweets for my daughter now can lead to a very dangerous situation. I’ll get to that later.

2. Type 1 diabetes is for life

Type 1 diabetes has no known cause and requires a lifetime of synthetic insulin infusions for a person to live. Throughout my daughter’s life, many well-intended acquaintances have commented that, while it must be hard to manage her disease, I should take solace in the fact that she will eventually grow out of it.

Nope.

Unlike some allergies and other childhood conditions, T1D is a lifelong situation—one that is on the rise and striking more and more people of all ages, according to Derek Rapp, president and chief executive officer of JDRF International (and father to a 24-year-old son with T1D.) “The number of new cases in people under age 20 has jumped 21 percent in the last decade,” says Rapp. While no one can point to an exact reason for the spike, researchers are working to figure it out (to date JDRF has funded more than $2 billion in research on everything from beta cell replacement therapy to the development of an artificial pancreas).

Meanwhile, Ellie tests her blood sugar six to 10 times a day to make sure her glucose levels are within a normal range. We carry glucose tablets, snacks, a change of insulin pump site supplies and a lifesaving glucagon shot everywhere we go. I never wanted to be a medical professional, but I can draw up insulin, prick fingers and insert pump sites like the best of them. Sometimes she misses a party, a gym class, a family holiday. She counts every carb she puts in her mouth and carries sugar with her in case her glucose levels go too low from too much insulin. She’s only beginning to understand the long term effects of poorly controlled diabetes—kidney failure and nerve damage and comas and blindness. We do our best not to dwell on those things, but they are a reality for kids like Ellie.

3. Normal celebrations cause her (and us) a fair amount of stress

Why? Because Americans use food to show they care. We tend to celebrate every occasion with a cake, cookie, or pop. And every carbohydrate (sugar) that my daughter puts into her mouth has to be accounted for—math formulas dictate how much insulin she needs to cover the food she eats. Even religious holidays are filled with the stuff that makes my skin crawl. And no one ever stops at just one serving—there are goodie bags and party favors and don’t get me started on Halloween. There have been times when she wasn’t being careful and, like any child, overdid it with the sweets. Once it caused her to go into diabetic ketoacidosis. “Diabetic ketoacidosis is a serious complication of diabetes that occurs when the body produces high levels of blood acids called ketones,” says Pellizzari. “This condition develops when there is not enough insulin and when there is not enough insulin, the body breaks down fat as fuel.” It sounds like a good thing if you’re on a diet, but for someone with diabetes, it can be life threatening. We spent the next two days in the hospital while they stabilized her levels. It was terrifying and we know how lucky we were that she was able to bounce back.

“While the medical staff worked on regulating Ellie’s blood glucose levels and developing an insulin regimen, we were taught how to keep our daughter alive moving forward.”

4. But yes, she can have a cookie

This was a tough pill for me to swallow. If my daughter cannot process sugar, how could I allow her to eat it? For many years after her diagnosis, it felt to me like I was feeding her poison when she would look at me with wide eyes, asking if she could have just one of the munchkins her coach was handing out to the team. The reality is that she can never really “just have” anything. She must use a device (called an insulin pump, but there are other devices, including syringes, injection pens and pods—thank you, technology!) to give her body the synthetic hormone she needs to process food so the glucose won’t just float around in her bloodstream and wreak havoc on her body.

According to Pellizzari, “Every parent of a child with diabetes must work to maintain a delicate balance of keeping their kid’s blood glucose levels within a normal range” through the use of insulin and sugar (when levels are too low), allowing their child to participate in fun celebrations, and to develop a healthy relationship with food.

5. She’s just a regular kid

Like many girls her age, Ellie loves soccer and Grey’s Anatomy and Snapchat and frappuccinos.

Just a regular kid who loves to take selfies | Photo credit: Courtesy of Julie Shapiro

Looking at her, you’d just see a “regular” kid. But she (and we) work hard to keep her that way. “People with type 1 diabetes can lead very normal lives, as long as they closely monitor their blood sugar, give themselves the proper amount of insulin at the right times, get enough exercise, and know when their blood sugar might be too high or dangerously low so they can immediately and appropriately treat themselves to avoid an emergency situation,” Pellizzari says.

“There is a level of maturity with these kids,” Rapp explains. “They have an enormous responsibility to keep themselves safe. The change in my son, Turner, before and after his diagnosis when he was 10, in the matter of a week or two...it was incredible. And I see it all the time. They are doing so many things right. They rise to the challenge. It’s incredibly inspiring.”

Soon after her diagnosis in first grade, Ellie was in the school cafeteria eating lunch. She accidentally dropped her sandwich on the floor. She knew she had already taken her dose of insulin and if she didn’t eat quickly, her blood sugar would drop. (“Early signs of hypoglycemia include shakiness, sweating, and irritability, and if not treated right away, can lead to seizures and even death,” explains Pellizzari.) So what did Ellie do? She picked her sandwich up off the floor and ate it. I only learned of this incident two days later. And my heart broke.

Life with diabetes isn’t easy. There are days when you hardly ever think about it; and other days when you wonder how something like this could happen to your child. You wonder how you’ll ever manage. But, as every parent of a child with a chronic disease knows, you just do—with the help of school staff and camp staff and coaches and trainers and doctors and diabetes educators and friends and family who are willing to take the time to understand the disease and learn how to help. It takes a village, but it works.

Photo credit: Courtesy of Julie Shapiro

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Published November 6th, 2018

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