Awareness of Early Symptoms: Our Diabetes Diagnosis Story

I read an article this morning about an 11 year old Tennessee girl who died this weekend from undiagnosed type 1 diabetes. She was ill, went to the emergency room, and was sent home undiagnosed. When she went back to the emergency room her blood sugar was 1600 and would not come down. This is utterly heartbreaking. Type 1 diabetes is a chronic autoimmune disease that requires a great deal of regular care, but it is manageable for most people. But without a diagnosis, a type 1 diabetic cannot get the insulin which her pancreas has stopped producing. Without insulin injections, a type 1 diabetic will die. Period. 

I have talked some about our diagnosis story, but after reading about this tragedy, I feel that I should try to tell our story in a way that will raise awareness about signs and symptoms of type 1 diabetes (t1d). If you are like I was, then you probably never think about your child having t1d; you may not even know what symptoms to look for. We were lucky, and, with some help, we caught it early, but many people do not catch it until there is a serious problem, and without knowing what symptoms to look for, you may not tell your doctor what she needs to know to diagnose your child. The main early symptoms of t1d are frequent urination, excessive thirst, and weight loss despite regular eating. 

If you notice the picture above you will see the major weight loss that my daughter went through. Could you guess how close together those two photos are? They were taken only 4 months apart. When I look at them side by side, I feel like a fool. I knew she was losing weight, but I thought she was just losing baby fat, just growing up. I figured she was getting taller, too, I just didn’t notice it as much. It didn’t seem so dramatic to me because I was with her everyday. She was eating the same, just getting thinner. In the weeks leading up to diagnosis, she also began drinking more water. Always needing a refill. To be honest, other than feeling annoyed at having to get her water all the time, I was glad she was drinking so much. I figured it was good for her and was contributing to her weight loss in a positive way.

A week before diagnosis, she was going to the bathroom a lot. She always needed to pee and it was usually urgent. I was a little concerned, but figured she was just drinking too much water. Then three nights in a row she wet the bed. She was peeing all the time! I didn’t know what to do. The weekend before diagnosis, my daughter spent the night with my parents-in-law. While I was out at dinner with my husband, my mother-in-law texted me that my daughter was peeing a lot. I was a little annoyed. I was on a date, and I already knew she was peeing a lot. I had warned my mother-in-law about the bed wetting even. I responded quickly and put it out of my mind, or I tried to. 

But I began to feel guilty. I felt like my mother-in-law would be displeased if I didn’t take my daughter to the doctor after this, so Monday morning I made an appointment for the following morning with my daughter’s pediatrician. While waiting to go in, I began googling my daughter’s symptoms. I figured it was a UTI or something like that. I didn’t think anything about the excessive thirst or weight loss. All I thought about was the peeing. A couple of times, t1d would come up as a possibility, but I was sure it wasn’t anything that serious. I was sure it was something minor, an annoyance more than anything.

Tuesday we went to the pediatrician. I talked to him about the peeing. I had mentioned thirst to the nurse who checked us in, but I didn’t think it was important. The nurse, though, mentioned it to the pediatrician after we had mostly decided it was a UTI. He came back in the room and asked again about thirst and for the first time about weight loss. I confirmed both, and his face looked worried. He checked sugars in her urine, and said we needed to go to the emergency room. I was shocked. I was sure it was not this. But in reality it was t1d. We almost missed a diagnosis because I didn’t think the symptoms were anything important. They seem so minor. We went to the emergency room and stayed for 3 days. My daughter was never admitted to PICU because we caught it before she was in critical danger. Many kids are not so lucky. Many kids are not diagnosed until they need to be in PICU. And some kids aren’t diagnosed in time. 

Our diagnosis story is pretty tame compared to most, to be honest. We were so lucky. We are so lucky. I now feel like my mother-in-law saved my daughter from potential danger by interrupting my date night with a concerned text. Who knows if I would have taken my daughter in to the pediatrician without that nudge. I couldn’t see what was right in front of me.

Ours is a happy story. We found out early and avoided having a horrible diagnosis story. What I want readers to get from this though is knowledge of early symptoms of t1d. I want every child who has this condition to be diagnosed the way Ada was–early and without danger. I want you to know what to tell your doctor. You might brush these symptoms off as something minor, but they are early signs of something major. You can save yourself a lot of heartache by taking them seriously. Sending love to all of the t1d warriors out there. We’re new to your ranks but proud to fight beside you.


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