Sharing My Story: Anastasia

Anastasia Albanese-O’Neill, PhD, ARNP, CDE, is an assistant professor of nursing at the University of Florida in Gainesville, as well as a nurse practitioner and diabetes researcher. A longtime volunteer for the American Diabetes Association, she currently serves as co-chair of the Safe at School Workgroup and also sits on the ADA's National Advocacy Committee, Legislative and Regulatory Subcommittee and Volunteer Engagement Workgroup. She and her family live in Gainesville, Florida. This is her story:

Reflections on Our Daughter’s Type 1 Diagnosis

My daughter Cassidy was 16 months old and still in diapers when we started to suspect that something wasn’t quite right. My husband and I didn’t know what to do or think, but we knew something was wrong. 

Cassidy was an early talker, and each morning we found her standing up in her crib telling us “Cassidy thirsty.” She kept drinking and drinking—and she was very hungry, too. She kept wetting through her diapers, clothes and bed sheets.

Deeply concerned, we took her into the pediatrician three weeks in a row. Our regular doctor happened to be on medical leave during this time, so we saw other doctors who weren’t as familiar with her history. At one appointment, she was diagnosed with an ear infection. At others, we came home without any diagnosis. No one asked specifically about her symptoms of increased urine and thirst, and while we thought we were communicating effectively, perhaps we weren’t. As first-time parents with no experience in the medical field, we were quick to chalk it up to our own inexperience.

“Something just isn’t right.”

Things escalated on an airline trip with Cassidy. We lived in California at the time and were flying home to Los Angeles. During our trip, she had been extremely hungry and thirsty, and on the two-hour flight, she wet through her diaper, clothing and the cover of her car seat. She was very fussy as well. As we landed at LAX, I turned to my husband and said: “This can’t be normal. Something just isn’t right.”

My mother turned out to be the first person to “diagnose” Cassidy. An attorney, she has made a long career of defending school systems. She is very familiar with Section 504, the federal civil rights law that prohibits discrimination on the basis of disability, and the rights of students with diabetes.

I called my mom to tell her about Cassidy’s health problems. “Sounds like diabetes,” she said, urging us to visit the doctor again right away.

Diabetes?

At the time, type 1 diabetes just wasn’t on my radar. There was a very short section about it in my dog-eared copy of “What to Expect the First Year” that I looked up after my talking with my mother.

Cassidy’s symptoms worsened. By the time of our appointment, she was stumbling, vomiting and having trouble breathing. At check-in, we told the clerk we thought she might have diabetes. She replied that Cassidy was probably “too young.” They sent us down to the lab for bloodwork, but she was so dehydrated they were having trouble finding a vein.

Then, almost out of nowhere, appeared a doctor whom we had met briefly upstairs and who knew what was wrong. He came running over, grabbed Cassidy and told us to follow him. “She’s really sick. Do you want to go to the intensive care unit by helicopter or ambulance?”

Four days in the hospital

I still didn’t know what this type 1 diagnosis meant or what we were facing. In the ICU, we were told that Cassidy’s blood glucose was so high that she was experiencing diabetic ketoacidosis (DKA), a condition that can lead to diabetic coma or even death. The nursing staff allowed us to stay at her bedside, and although she had IVs in both arms held in place by splints, we managed to take turns holding her through the night.

By the next day, she had stabilized and was soon moved out onto the hospital floor. It was during this time that we embarked on our diabetes education, meeting with doctors, nurses and dietitians to learn about the disease and how to manage it with injections and a fixed meal plan. Within six months, we had learned to count carbohydrates and Cassidy started using an insulin pump, which was a better fit for a toddler’s lifestyle.

Though we have adapted to life with diabetes—it will be 14 years in April 2016—I will never forget how scary that experience was. It’s not something you ever want to go through as a parent. I so wish that Cassidy’s type 1 had been picked up sooner.

Our family today

Now Cassidy is a happy 15-year-old. She has never been back to the hospital for diabetes care—even when she came down with rotavirus a few months after developing type 1 (now there is a vaccine for it). She uses an insulin pump and CGM (continuous glucose monitor) most of the time, but sometimes she prefers injections. She is very independent with her diabetes management and not at all shy or embarrassed about her diabetes. Perhaps her openness has allowed her friends and their families to be involved and supportive. We have learned that with the right support, you can manage diabetes, even with its inevitable ups and downs.

Cassidy is an excellent student and an active teenager who plays volleyball, and is involved in theater and dance. She loves diabetes camp and we attend the Children with Diabetes Friends for Life conference every summer in Orlando. I’d say she is a very good everyday champion for this disease—she just lives her normal life, and diabetes comes along for the ride.

This shouldn’t have to happen

A diabetes diagnosis will always be a serious event, but it doesn’t have to be the bad start that ours was, or worse. With a very heavy heart, I acknowledge that some families have not been so fortunate. I channeled the trauma of almost losing Cassidy at diagnosis into raising awareness about diabetes while simultaneously raising money for diabetes research.

Then, on a typical drive to school one day in 2007, Cassidy innocently asked: “Mommy, what are you doing to cure diabetes?” After sitting lost in thought in the parking lot, I resolved to dedicate my professional life to type 1 diabetes care, research and advocacy. I am proud to have volunteered with the American Diabetes Association® in many capacities over years—and now to help them raise awareness of this very important issue.

I have learned that there are many reasons why hyperglycemia, or very high blood glucose, can be missed in children. There are many other health problems it can be mistaken for—the flu, for example. But this doesn’t have to be the case.

What I want you to know

Type 1 diabetes onset is acute, and the signs and symptoms can be dramatic. Parents, teachers, daycare providers, camp counselors—anyone who cares for children, both young and old—should know the basics.

The same goes for all health care providers, especially in the primary care and emergency care settings, who should take a full health history of the present illness. Considering cases of type 1 diabetes have increased dramatically in the last 20 years, it should be on their list of possible diagnoses in patients who have even one of the symptoms. Providers also shouldn’t assume that parents will know to volunteer this information.

To all the parents out there: Be aware and speak up for your child. When you know something is just not right, trust your gut. If your child isn’t acting normally, suddenly wetting the bed, showing signs of the flu—take him or her in to see the doctor. Report everything that you’re seeing at home, so they have the full picture. Be a partner in your child’s health. Maybe it’s serious, maybe it’s not, but you need to find out.

We need to get to the bottom of these cases faster, so we can avoid the progression to life-threatening DKA. The sooner type 1 is diagnosed, the better.

Learn the symptoms

Do you have a story to share about your experience with diabetes? Share it with us here.