juvenile diabetes

There are moments in life that strike like a stray bolt of lightning -- recklessly, dangerously, and leave your nerves singed, your heart shattered. When the smoke clears, you feel like curling up in the fetal position to grieve, to heal, to compose yourself ... but you choose to absorb the life-altering zap. As a mom, you instinctively know your child is counting on you to meet her gaze with hopeful eyes. Carrie Sorkin recently delivered in one of those moments ... when her beloved 8-year-old daughter was diagnosed with type 1 diabetes.

According to the Juvenile Diabetes Research Foundation, type 1 diabetes is an autoimmune disease in which a person's pancreas stops producing insulin, a hormone that enables people to get energy from food.

Each year, more than 15,000 kids are diagnosed and that figure is on the rise. Three million people are living with the disease ... and there is no cure.

Carrie’s daughter, Carly Alexa, is a sweet, spirited, curly haired beauty who loves dance parties, dressing up, and going on adventures with her many friends. She’s a typical tween with a heart that’s almost as big as her mother’s. When she started experiencing wild mood swings -- happy one minute, hysterical the next -- Carrie knew something was wrong. She recently sat down with The Stir to share her journey to her daughter’s type 1 diabetes diagnosis.

You first expressed concerns about Carly in March. Take us back to that time.
Carly was experiencing both major mood fluctuations at home and an inability to pay attention at school. A pediatric psychologist diagnosed her with ADHD. We saw a tiny change in behavior when she started her medication, but she still suffered from severe ups and downs. Of course, I was concerned it could be something else but wanted to give the medication a chance to work. At the three-month mark, our pediatrician asked us to come in for a weight and blood pressure check. Routine visit, should take five minutes. Carly had lost a lot of weight -- 7 pounds -- but that’s typical with ADHD medications. 

On a hunch, I asked the nurse to check Carly’s urine because she said it hurt to go to the bathroom. The doctor came in, looking concerned, but didn’t say much. I was really nervous ... and rightfully so. I was informed that the glucose in Carly’s urine was more than 1,000. Having a background in diabetes (I used to be a pharmaceutical sales representative who sold insulin), I knew she was going to be diagnosed with type 1 diabetes. We were sent to the emergency room, and she was admitted after they ran her bloodwork. My baby, my first born, was diagnosed with type 1 diabetes in June -- months after she first had symptoms.   

Devastating. How did you stay strong for Carly?
I didn’t give myself time to process the diagnosis. That night, the nurse made me give Carly her first shot of insulin. I did it, reassuring Carly that she would be okay. Then I excused myself to the bathroom, sat on the floor, and cried. I managed to maintain my composure around her but I had to release some of the pain.

The next two weeks were a whirlwind of learning carb counting, doses of insulin, and watching for high and low sugars. I had to stock up on supplies I need to have on-hand at all times: a Glucagon pen, glucose tablets, glucometer, test strips, candy, juice, and snacks. I felt like I was packing up a diaper bag to get out of the house again. I also had to test her sugar about 10 times a day (neurotic mom that I am, I was probably testing closer to 15). I’d have to wake her up in the middle of the night to test her sugar. It was beyond surreal how much our lives changed in one moment.

What was the impact of Carly’s diagnosis on you as a mom?
Broken sleep every night coupled with emotional distress almost felt like postpartum depression. It took a little time for me to process her diagnosis and get over my initial sadness. But Carly was a TROOPER. Bravest kid I have ever met in my life. She wasn’t crying, she was giving herself shots! She made me a stronger person. 

Do you have a family history of diabetes?
Yes, we have a family history of type 1 diabetes. My aunt and my cousin both have it. That said, a family history only slightly increases your risk of type 1 diabetes. It can happen to anyone.

How has your life changed?
Since the diagnosis, life is getting back to normal -- our new normal. She goes to camp, but a nurse must accompany her during some activities. We are going out to eat again, but we now bring measuring cups and only go to restaurants that offer nutritional information on their website so we know how much insulin to give her. She is taking ownership of diabetes; I will not allow her to let diabetes take ownership of her. 

How is her condition being managed? She needs insulin for the rest of her life, right?
She is now on an insulin pump thanks to our aggressive endocrinologist. It has given her some freedom back. She doesn’t have to take shots, and she can eat whenever she wants. When she was taking shots, they would only allow us to give her an injection every three hours once the mealtime insulin wore off, so she couldn’t snack between meals unless it was just protein (no carbs, no sugar). Miserable for a kid! The pump has made it so much easier for her.

Changing the infusion on the pump is traumatic (every three days it has to be moved to a new location on her body). It makes a suction type of noise and I think that scares her more than the pain. She cries when we change it, but I know that will get better. Her brother and sister, Noah and Hallie, give her presents when she changes it ... a stuffed animal from their room, a cookie. They tell her she is so brave. Their love and compassion for her make me cry.

What’s the key takeaway from your experience that you want to share with other moms?
Behavioral roller coasters can be due to changes in sugar levels in the body! When we took Carly off of her ADHD medication and got her diabetes under control, her mood stabilized. When she starts acting a little off, we test her and usually her sugar is off. I wish someone had run a blood panel before diagnosing her incorrectly with ADHD and giving her a medication she did not need.

Someday I hope that we can be advocates for type 1 diabetes to support research, educate the public, and raise awareness. We have already signed up for Juvenile Diabetes Research Foundation’s annual walk in the fall. We are strong. I think together we can do anything.

Has juvenile diabetes affected your child or someone you know? What were the signs?


Image via Carrie Sorkin