Parents Talking Type 1: Shauna and Matthew Tompkins

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.

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Lily Tompkins

Lily Tompkins

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.

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6 Responses to Parents Talking Type 1: Shauna and Matthew Tompkins

  1. Mark McLean says:

    Lily is my granddaughter. She is absolutely amazing and no one is a stranger to her. And her parents are heroes.

    • Mary says:

      God Bless this little golden-haired wonder! So happy to hear she is doing so well. I have been searching for information about toilet training toddlers with Juvenile Diabetes and have found very little. My 3 1/2-year-old grandson was diagnosed with JD about 5 months ago. Attempts to toilet train have had very little success. Has anyone else experienced this? I realize completely he may have urinary issues he can not as yet control. Diabetes is common in my family, all type 2. Corey is the first in 2 generations to have Type 1. He is regulated very well with daily blood checks, Ketone check, good diet, etc. If anyone can comment on their own experiences and give me some information I would love to hear it. Corey is the youngest of 4. His older brothers are 22, 20, & 18. I am not sure if this matters..perhaps a bit of spoiling going on. My daughter tells me his doctors say to give it time, but I am not sure she puts much effort into training him (spoiling as mentioned?)

      • Samantha Redmon says:

        My son was diagnosed with type 1 when he was 2 yrs old and potty training was really hard. We tried everything but what worked really well for us was just patience and those neat little targets you put in the toilet. He was fully trained at age 4 1/2 and is now 6. Hope this helps

  2. RAY TOMPKINS says:

    Little Lily is a marvel of a four year old who is brave, fun, and always a bit of sunshine in the life of everyone who comes into contact with her. God bless her

  3. Lois Troutman says:

    I have followed the life of Lily through the pictures and stories Matthew and Shauna so graciously share with us. I love this little munchkin, the Shirley Temple moppet. And I don’t know her or the family personally. I love the pictures of brother Luke and sissy. Through Lily’s gorgeous, sweet smiles, I can tell she is thriving even though her illness can cause blips on the family’s radar. Matthew, Shauna, Lily and Luke have touched my life. I am thankful I can share with them in some small way. I have a sister with diabetes but she is 67 years old. But, I sure hope for a cure for the young and the old. I sure hope for a cure of another atrocious illness, the one that took my husband at age 52. That is cancer. These illnesses all affect us in so many ways. Thanks to Shauna and Matthew for sharing their stories. Bless your hearts!

  4. Anna says:

    Hello, my 3yr old son was just diagnosed Type1 on 11/27/14; much like you story we werein the NICU for 5 days. This is such a scary time for me & my family, I am in a state of WHY & in a state that I want to find everything out to help & keep my son healthy. I am a roller coaster of emotions, though I know my questions won’t ever be answered to WHY this happened & WHY there is no cure, I love reading stories like yours, it helps me see a little hope, but I can’t shake off the worry & fear I now have. Any advise & knoweledge would be of great help & support. We are a family of 5 from San Antonio, TX- Dad, Mom, Grandmother sister & our darling little 3yrold boy.

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