Misdiagnosed at 11: Rylie’s Story

This article was written exclusively for Information About Diabetes by Rylie Green, a type 1 diabetic teen who was misdiagnosed at the age of 11.

My name is Rylie Green. I am 13 years old, live in Wichita, Kansas, and have type 1 diabetes. I have six brothers and sisters (five older and one younger ), two wonderful parents, a sweet puppy named Imy, and a precious cat named London. I had a wonderful childhood; we loved to go out and get ice cream, play outside and go on walks. But when I turned 11, those things changed.

Misdiagnosis

My father has been diabetic since he was in his 20s. All of my brothers and sisters before me had been perfectly healthy. We would have never guessed I would be the one with health issues.

One day my dad was testing his blood sugar, and I decided to test mine. It was not good. This worried my parents, so they decided to monitor my blood sugars for the next few days. I assumed everything was OK; as an 11-year-old, I didn't think much of a high blood sugar level.

After a week, my parents had made the decision to take me to the doctor. My mother picked me up from school and said that we were going to the ER. I was really afraid; I didn't know what was going on, and I didn't know what they were going to do. When we arrived at the hospital, they took blood and set in an IV. The next day, the doctors told us I had type 2 diabetes. They assumed it was type 2 because of my age and metabolism.

I stayed in the hospital for almost a week. I learned how, when and where to check my blood sugar. I never knew how dangerous a blood sugar over 180 could be. I learned how to take my insulin and how to calculate my insulin-to-carb ratio. To tell you the truth, I was scared for my life. But my wonderful doctors took care of me and told me that I could fix this and, at my young age, get off of my insulin.

Struggling

After I got out of the hospital, I had some complications with my insulin-to-carb ratio. I had 300s during the day then dropped down to the 30s at night. My body was working so hard that I was too tired to move during the day.

I went to see my endocrinologist every few months, and every time I went my A1C was a little higher. No matter how many pills they put me on or how much they changed my ratios, my A1C got worse and worse. I had no idea what I was doing wrong. I was testing regularly and taking my insulin when needed. It was so frustrating to be gaining weight, tired and having doctors prick and poke me more than was needed.

A few months ago, I went back to my endocrinologist, and my A1C had skyrocketed to an 11. The doctors assumed I just stopped taking my insulin – that’s how bad it was. They had brought in a new doctor this time who asked us so many questions. We had realized that when I was first diagnosed the doctors never gave me the test to check whether I was type 1 or 2. This new doctor suggested we do the test as soon as possible.

The test came back about a week later saying I have type 1, not 2. I was so frustrated that I was on useless pills for months – not only mad at the doctors but mad at the world. I was told for almost two years that if I tried hard enough I could get off my insulin, and I tried so hard for all that time when I’m actually going to need insulin 24/7 for the rest of my life.

It is still a struggle today, but I am getting better. My new doctor is the best. We are working on my ratios, and I am waiting for my new pump.

Strength

All I want to say is I was 11. I had my first abdominal cyst at 12 caused by high blood sugars. No matter how hard things seem to get, it can be fixed.

Philippians 4:13 helped me get through this hard time. It says, “I can do all things through Christ who gives me strength.” I could not do this without the help of my Lord but also my friends at school who yell at me until I take my blood sugar at lunch and remind me to take my insulin. I could have sworn that I would be sitting alone at lunch because I had to prick and poke myself before I could eat, but my friends love me just the way I am. I am so blessed to have them in my life. I could not have gotten through my misdiagnosis without them. My parents are always there for me, and no matter how annoying I may think it is for them to nag me about my blood sugar, they are keeping me alive.

There are people in the world going through exactly what you are going through. God would not have given you diabetes unless he thought you could handle it. It will make you stronger. Keep testing, taking insulin and believing that doctors are doing all they can to make things easier for us. One day there will be a cure.