Editor’s note: This essay was submitted by Wendy Dobesh of Morrison, IL. Her three children have been diagnosed with Type 1 Diabetes. The first photograph of Emily, William, and mother Wendy Dobesh, was taken Wednesday, November 2, 2016, after they had their hair colored by Amanda Fassler, at Beauty Hutch. Older son Isaiah had his hair colored on Saturday, November 12. Emily Dobesh is a Massage Therapist at Beauty Hutch, 119 W. Main Street, Morrison, IL.
In September 2016, my daughter, Emily, asked me if I’d consider dyeing my hair blue along with her, to bring awareness to Type 1 diabetes during National Diabetes Awareness Month in November. While I’m not one to draw attention to myself, I immediately said yes. I’m passionate about educating anyone who will listen about Type 1 diabetes, not only so lives can be saved, but to dispel the many myths out there.
Our story begins in 2006. It was at the tail end of the dog days of summer, when I began to suspect something might be wrong with my son. I kept chalking up the increased thirst and urination, which my nine-year-old son, Isaiah, was experiencing, to the extreme heat. Just the week before I’d taken him to the eye doctor to have his vision rechecked, because he was complaining of blurry vision. The doctor said there hadn’t been any change in his eye glass prescription. The eye doctor didn’t suggest any other explanation for the blurry vision Isaiah was having.
A few days later, we visited a friend who shined a spotlight on my concern, when she mentioned that Isaiah seemed to be using the bathroom a lot. That’s when I knew I needed to get him to the doctor. Unfortunately, the clinic was right in the middle of back-to-school physicals and couldn’t get him in for nearly a week. I had explained his symptoms over the phone. The clinic didn’t seem too concerned, but I called back each morning to see if they had any cancellations.
When we finally saw the APRN, she was quick to realize that Isaiah’s symptoms, including a ten-pound weight loss, were serious. Within minutes she had his blood sugar checked and diagnosed him with Type 1 diabetes. The condition was previously known as “juvenile diabetes,” because it is usually diagnosed in people under 20. It can be diagnosed at any age. The ensuing days were a whirlwind of activity.
Isaiah was transferred by ambulance from the clinic to the closest children’s hospital. We endured hours of Type 1 diabetes education, including how to calculate carbohydrates and figure up carbohydrate-to-insulin ratios; how to draw up and inject insulin; how food and exercise affect blood sugar. We learned that Type 1 diabetes is a genetic autoimmune disease–where the body attacks the beta cells in the pancreas, which produce insulin.
Imagine you are a car and glucose (blood sugar) is the fuel. Insulin is the ignition key. Your gas tank could be full, but without that key to start your car, you cannot go anywhere. You cannot burn glucose for energy, without insulin opening each cell in your body to allow the glucose in. It is the buildup of glucose in the bloodstream that causes the extreme thirst and urination. Your body struggles to flush the excess build up of glucose in the blood, because the cells can’t take it in and use it for energy.
As we began navigating our way through this new world of Type 1 diabetes, I realized we couldn’t make this journey on our own. I reached out to other parents on the American Diabetes Association’s parents with children with Type 1 diabetes message board. These parents helped me to process and handle this new diagnosis, in a way no one else could. They were there at 2:00 a.m., when the alarm went off to check Isaiah’s blood sugar. That was when I found out we needed to have a “picnic,” because his blood sugar was too low. He needed to eat. Imagine getting a child awake enough at 2:00 a.m. to drink juice, wait 15 minutes, then eat a snack or sandwich!
I would jump on the message board and chat with other parents who were doing the exact same thing. We kept each other awake enough until we knew our child’s blood sugar was in a safe range, and we could go back to sleep. These parents offered an amazing network of support–both emotionally and educationally. They were my only lifeline and support, because my husband was deployed overseas and on mission. So, he had no idea what we were enduring at home for nearly three weeks.
In 2010, we decided to attend a convention for people with Type 1 diabetes, put on by Children with Diabetes, in Orlando, FL. Not only did we learn about all the exciting advancements in Type 1 diabetes research and treatment, we also learned about TrialNet. TrialNet is a Nationwide research study for relatives of people with Type 1 diabetes, a collaborative effort to prevent Type 1 diabetes. While at the convention we made the decision to have the rest of the family tested for the four known autoantibodies linked at that time to Type 1 diabetes.
My husband and I were negative for all the autoantibodies. Our daughter was found to be positive for three, and our youngest son was positive for all four. We knew that this increased the odds of our other two children being diagnosed with Type 1 diabetes at some point in their lives. At this point, we decided to have them participate in a research study through TrialNet, to track their autoantibodies and their glucose tolerance every six month.
I will forever be grateful for TrialNet! Through the research study, both my daughter, Emily, and other son, William, were diagnosed in 2014 with Type 1 diabetes–without having to experience horrible, life-threatening symptoms. In fact, William was diagnosed so early in the onset of Type 1 diabetes, that he didn’t start on insulin for almost five months.
Sadly, not every person diagnosed with Type 1 diabetes ends up being as lucky as Emily and William. Doctors too often misdiagnose the onset of Type 1 diabetes as flu or the stomach bug. When the individual who is misdiagnosed is accurately diagnosed, they are much sicker, often in a coma or are diagnosed after they have died.
There is a huge push in the Type 1 diabetes community for the American Academy of Pediatrics to do a better job of calling attention to Type 1 diabetes.
- Had I known how serious the symptoms of Type 1 diabetes were, I would have taken Isaiah immediately to the emergency room.
- I believe all medical clinic staff should know the signs and symptoms of Type 1 diabetes.
- I also believe that, when I called to schedule an appointment for Isaiah, we should have been told to go immediately to the nearest emergency room.
With Type 1 diabetes increasing at an alarming rate, according to an article titled, “Type 1 Diabetes Rates Rising in U.S. Youth” in the Wall Street Journal dated June 9, 2012, there was a “23 percent rise in Type 1 diabetes prevalence over an eight-year period ending in 2009.” There is a call for pediatricians to include a discussion of the symptoms of Type 1 diabetes at well-child visits.
The one thing I’ve always had a difficult time understanding is why doctors don’t more often test for Type 1 diabetes. It costs less than $1 to do a finger poke to test blood sugar on a glucometer and/or test urine for glucose and ketones. Doing these two simple tests would be an excellent way to quickly rule out Type 1 diabetes when a child exhibits some of the symptoms.
Type 1 diabetes is a serious disease and can be deadly if not diagnosed in time. So, if your child, family member, or friend experiences excessive thirst and urination, vomiting, fatigue, sweet smelling breath, and/or weight loss, please see your family doctor immediately. I encourage all parents to ask their doctor to test their child’s blood sugar if they suspect their child may have Type 1 diabetes. Don’t assume that the doctor will recognize the signs and do the appropriate testing.