“Something Just Isn’t Right”: Reflections on Our Daughter’s Type 1 Diagnosis

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Cassidy about one week before she was diagnosed.

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.

Cassidy in action on the volleyball court.

Cassidy in action on the volleyball court.

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.


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 Association’s National Advocacy Committee, Legislative and Regulatory Subcommittee and Volunteer Engagement Workgroup. She and her family live in Gainesville, Florida.

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9 Responses to “Something Just Isn’t Right”: Reflections on Our Daughter’s Type 1 Diagnosis

  1. Pingback: “Something Just Isn’t Right”: Reflections on Our Daughter’s Type 1 Diagnosis | My Diabetes Buddy

  2. Pingback: “Something Just Isn’t Right”: Reflections on Our Daughter’s Type 1 Diagnosis | Gregg's Diabetes

  3. Carolyn Honeycutt says:

    Education is a key word in treatment of this disease. Our daughter was 15 and a cross country runner. Perfect picture of health but then she started having strep, fatigue, headaches, extreme thirst and going to the bathroom all the time of the day and night. As I look back, another big indicator was constant change in vision. She came home from running one saturday morning and told me she thought she was dying. I laughed and said, oh did the coach run u hard this morning, She looked at me with such a serious look and said, “I think I am dying”. We went to our local emergency room. Her blood sugar was 1063. She was transferred by ambulance to a hospital with a diabetic training program. After eight days we came home and she was determined to continue her life as near normal as possible. She continued to run cross country and took up to 10 shots a day to keep her level normal enough to run. After almost a year she went on an insulin pump (omni pod). She has had ups and downs but has never had to go to the hospital for assistance. She just took over her own care from the beginning. She was always in the top five on her cross country team and they won state her freshman, sophomore, junior years and came in second in state her senior year. She got a full ride to college on a running scholarship. After two years and being admitted into the nursing program she stopped running competively. She now has her BSN and is a nurse in ICU in a level I trauma center.

  4. Joel S. Haan says:

    With my diagnosis of type1 diabetes at age 10 back in November 29, 1982 yes I had classic symptoms of the disease, but I was thought to have seizures, finally had some lab work and the following day I was checked into the hospital and was started on shots, 33 years later I like the rest of us are still waiting for a cure. Managing my diabetes with a pump has been helpful I still have my good and bad days.

  5. Mary George says:

    This is similar to my daughter’s diagnosis. She was 3 & 1\2 years old and I knew something was wrong, she didn’t have any energy to play and started wetting the bed and was fussy. We took her to her pediatric doc and he brushed my concerns off, a few times. My former husband has diabetes and I thought she may have it too. Long story short, the doc finally ordered a glucose tolerance test and after the first dose, I was told she had diabetes. She is now 31 and is tolerating the best way she can. I am so proud of her, she is a strong woman! Parents follow your gut feelings and be persistent.

  6. Pingback: “Something Just Isn’t Right”: Reflections on Our Daughter’s Type 1 Diagnosis | Diabetic Junction

  7. This is almost identical to my son’s diagnosis when he was just 25 months old. He was misdiagnosed twice, his regular doctor was out of town. First the flu, next an ear infection. Finally, after my son collapsed after 6 days of being misdiagnosed, Urgent Care ran labs. He ended up with collapsed veins from dehydration, DKA and a 4 day hospital stay. I was told we were very fortunate to have gotten him in when we did or he may not have survived. Very traumatic experience and one that was so unnecessary if there was just more awareness! I too, have dedicated my life to raising awareness. I along with two partners have started EASE T1D which is a fiscally sponsored non-profit dedicated to raising awareness and bringing education to the general public on this life-threatening disease. Thank you for all you are doing to help raise awareness and for being an advocate for change!

  8. Pingback: “Something Just Isn’t Right”: Reflections on Our Daughter’s Type 1 Diagnosis – Normalcy.info

  9. Pingback: The Best Diabetes Blogs for 2016 - ChronicPainDisorders.com

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