Diabetes is a disease that affects the whole family, especially when a child is diagnosed. Parents of children diagnosed with diabetes face overwhelming, and sometimes frightening, questions such as: How can I strike the balance between caring and hovering? Will she ever be able to eat sweets again? How will I ever be able to let him go out on his own?
This is the latest in our occasional series from parents of children with diabetes, illustrating the emotions, challenges and successes each family faced upon diagnosis.
Name: Shauna Tompkins
Location: Frisco, Texas
Our daughter has type 1 diabetes. Lilyanne is nearly 4 and was diagnosed in July 2012 at 23 months old. Ours is a cautionary tale, but with a happy ending.
We were riding in the car one day when Lily began to complain of stomach pain, that she didn’t “feel good.” She then spontaneously threw up. Later that evening she still had trouble keeping anything down, and she exhibited classic signs of what our pediatrician called the “summer flu.” It was the weekend, so we were instructed to keep her hydrated and control the nausea with a prescription until they could see her fist thing Monday morning.
At the doctor’s office they discovered a double ear infection (along with that summer flu). A round of antibiotics would take care of her ears, while a regimen of hydration and rest would help her recover from the flu. At this point no blood work had been done, as no one was looking for diabetes. We have no family history of it, and they rarely do blood work on someone so young unless it’s absolutely necessary.
But Lily only got worse as the week wore on. A repeat visit to the doctor and a stronger antibiotic did little to improve her rapid weight loss and weakness (we know now, of course, she was in the early stages of diabetic ketoacidosis, or DKA). At the end of the week, we caved to our instincts and headed to the ER at Children’s Medical Center in Plano, Texas.
Once the blood work came back, there was little doubt. Lily’s blood glucose was 495 mg/dl and her A1C was a staggering 14 percent. She was transferred to the ICU, where one of the finest endocrinology teams in the country, led by Dr. Perrin White, got her stabilized. She spent nearly two weeks in the hospital as her body adjusted to the insulin she was now receiving by syringe. Meanwhile, we came to grips with her type 1 diabetes diagnosis and our new normal. We plunged headlong into diabetes training with an amazing staff of educators.
Today, Lily is the blonde-ringleted, hilarious, energetic “belle of the ball” everywhere she goes. She evokes Shirley Temple and leaves a lasting impression on everyone she meets. She has adjusted to the five-shot-a-day insulin regimen like a trouper (she calls it her “medicine”). Just a couple weeks ago, she absolutely ROCKED the stage in front of 1,500 people at her first dance recital. Oh, and she loves to dote on her baby brother, Luke!
The greatest challenges for a young child with diabetes like Lily mostly come from the huge swings in blood glucose, even when we’ve “done everything right.” She is simply growing so fast, and her hormones are in such flux. Worrying about nighttime lows has led to our fair share of sleepless nights. She has, however, become more and more communicative about how she feels when she is low or high, which helps enormously. We have also become very adept at watching her behavior, to gauge where her numbers are.
After much conversation and research, we are about to transition to using an insulin pump. Lily was swayed by the prospect of avoiding five needles a day AND the fact that she could decorate her pump with princess stickers. She wore a practice pod on her arm for three days and was quite proud of it. I’m excited and nervous for her. We hope this help lower her A1C into the target range more quickly.
There is an added layer of vigilance on every level, and Lily has the typical (and literal) highs and lows of anyone with type 1. Still, it is important to say that, except for stopping for shots and getting a snack sometimes when she doesn’t want it, diabetes hasn’t slowed her down at all.
If your child is diagnosed with diabetes, don’t panic. It is serious, but it doesn’t mean your child won’t have a passionate, active, wonderful life. He or she can play sports, go to college, travel, get married, have children—everything. Be voracious in gathering information. Embrace the process and protocol. Use all of the available support. Be relentless and fearless with your caregiving, and your child will follow your lead.
This has been an incredible, challenging and sobering journey. But Lily’s energy, joy and enthusiasm are a constant source of inspiration for us.