What it's like when your child has Type 1 diabetes .

Three Day Diet

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Leah, a beautiful little girl I call my niece, was diagnosed with Type 1 diabetes (T1D) this summer. She had been napping multiple times a day, soaking through diapers in an hour. She was begging for water all day long. Her parents knew something was wrong, but they had no idea it would be this serious.

When the doctor called with Leah’s urine test results, they told her parents to rush to the hospital, where they spent the next three days having their lives flipped upside down and all around. Leah is 2 years old. The first time I saw her after her diagnosis, I got a picture of just what this family is dealing with.

We were out to eat and were all deciding what to order. Leah’s mother googled the carb counts for Leah’s favorite lunch: mozzarella sticks. Then they tested her sugar, which meant pricking her for a few drops of blood. Then they calculated how much insulin she needed. Finally, they gave her insulin, pricking her again, just so she could eat her lunch. Our server took a long time to bring the food. With that came the worrying they might have given her the insulin too early and her sugar would drop too low before the food arrived.

The whole thing was a long, stressful, exhausting process. Leah’s parents made it seem like no big deal. It’s just what they have to do now before Leah eats anything with carbs.

Leah’s Type 1 diabetes is hard on her

Type 1 diabetes (T1D) is nothing like Type 2. T1D can’t be prevented. It is unrelated to your diet. Researchers still don’t completely understand what causes it. When you have T1D, your pancreas either stops functioning fully or entirely, causing you to rely on insulin to regulate your blood sugar. It can have serious complications if not treated properly.

Leah is doing well, but her life has changed forever. She can only be left with caregivers who are trained to take care of her. For now, when she’s a toddler, this part is no big deal. But as she gets older, play dates, field trips, and birthday parties will be more complicated for her than for another child. She can’t simply run to the freezer to grab a popsicle on a hot summer day without going through the whole process of testing her glucose levels and taking insulin.

Type 1 diabetes is hard on everyone in the family

Leah’s parents, who are like a brother and sister to me, have a new life too. They not only have to jab their daughter with needles a dozen times every single day, they also have to battle with health insurance companies. They have spent hours on the phone just trying to get Leah’s life-saving medications covered by their supposedly good insurance. The financial hardship has been striking. Managing T1D is expensive.

And routines are essential: Every night they have to wake up at 2 a.m. to test Leah’s blood sugar. That means setting multiple alarms to be sure they wake up, checking Leah’s sugar, and many nights waking her up to drink juice when her sugar is too low. I babysat Leah one day, and it was heartbreaking to have to wake her up halfway into her nap to check her blood sugar. It was low, and Leah was sobbing as she drank her juice before lying back down and going to sleep.

I asked Leah’s parents if they had any tips and tricks for managing Type 1 diabetes. They didn’t have much to offer because it is still so new and so raw.

They are still learning how to manage Leah’s sugar appropriately. This involves calculating the carb counts for every single meal they prepare or serve. Imagine having to predict how many carbs a 2-year-old might eat at any given meal. It’s exhausting, and it’s scary, and this family is only at the beginning of its journey.

Leah’s parents are grateful for all the families that have reached out to them to offer their support, some they know personally but some they only recently met through online support groups.

November 14 is Diabetes Awareness Day. We are all hopeful that with continued research efforts, better medications will be created and T1D won’t be the lifelong battle it is now.

Images by iStock

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