We Had No Idea: How We Missed the Signs of Type 1 Diabetes
If someone had told me that my child had a life-threatening illness, I wouldn’t have believed them. But looking back, the signs were there—I just didn’t know what they meant.
It started with something subtle: lethargy. My daughter, who was normally full of energy, seemed exhausted all the time. We then noticed over a period of a few months that she was losing weight. Concerned, I took her to the pediatrician on a fall Friday afternoon, explaining how she seemed unusually tired. He reassured me that she was just a growing teen, that puberty could be exhausting, and that there was nothing to worry about. I left the office still uneasy, but I reasoned that if something serious was wrong, he would have caught it.
The next day, Saturday, things took a frightening turn. She was drinking an unusual amount of water, and her breathing sounded off—deep and labored, something I later learned was Kussmaul breathing, a sign of severe acidosis. At the time, I had no idea what I was witnessing. She went to bed Saturday night and there is nothing that could have prepared us for Sunday morning.
That next morning, my mother intuition told me to check on her. Something felt wrong, though I couldn’t explain why. When I went to wake her up, she didn’t respond. Panic set in as we realized something was terribly wrong.
She had slipped into a DKA coma.
We rushed her to the emergency room, where doctors quickly diagnosed her with diabetic ketoacidosis (DKA), a life-threatening complication of undiagnosed type 1 diabetes. Her blood sugar was dangerously high, and her body was overwhelmed by acid buildup from burning fat for energy. We took a two hour ambulance ride up to Portland, Oregon and spent four days in the pediatric ICU as doctors worked to stabilize her. She was incredibly sick, and we were lucky to have caught it in time.
Looking back, I can see all the warning signs we missed. The lethargy, the weight loss, the excessive thirst—these were classic symptoms of Type 1 Diabetes. But we didn’t know. And neither did our pediatrician. Had we recognized the signs, a simple fingerstick blood test could have caught it before she reached DKA. We could have avoided the coma. We could have avoided the ICU.
I don’t blame myself for not knowing—no one had ever told me to look for these signs. But that’s why I’m sharing our story now. Because parents should know. Pediatricians should know.
Type 1 Diabetes doesn’t wait for a convenient time to show up. It doesn’t care if a child looks “healthy” or if the symptoms seem like normal growing pains. It can progress quickly, and when left undiagnosed, it can become life-threatening.
If your child seems “off”—if they’re drinking more, urinating more, losing weight, or unusually tired—trust your parent instinct. Ask for a blood sugar test. It takes seconds and could save their life. I wish I had known that sooner.
What was your diagnosis story? What symptoms did you or your child show? You are not alone. We are in this together.
The Challenge of Diagnosing Type 1 Diabetes (T1D)
Hindsight is always 20/20. Once a diagnosis of type 1 diabetes (T1D) is made, the symptoms that had been brewing for weeks or months suddenly become clear, as if the signs were always there. This often leads to the question: Why wasn’t it caught sooner? Let’s explore this further.
With nearly 9 million people living with T1D worldwide, it’s one of the fastest-growing non-communicable diseases. Around 90% of individuals present with excessive thirst and frequent urination, while nearly half of children with T1D experience significant weight loss. There are also less common symptoms, such as yeast infections and blurry vision.
Given the prevalence of T1D globally, one might think it would be on the top of a provider’s mind when someone presents with these symptoms. However, the reality is that awareness and understanding of T1D are inconsistent across the world. In some regions, limited resources further hinder access to diagnostic testing for T1D.
Why Is the Diagnosis Often Missed?
The symptoms of T1D can be subtle and non-specific, often overlapping with other conditions, which makes it easy to miss. For example, excessive thirst and urination can be mistaken for a urinary tract infection (UTI). If the weather is hot, it may not be considered to be a symptom at all! As we learnt from our friend and collaborator, Kaajal Vaghela, who lives in Zambia and has had T1D for many years, in regions of Africa and Asia, where infectious diseases are more common, weight loss may be attributed to malaria or typhoid, and diabetic ketoacidosis (DKA)—a potentially life-threatening complication of T1D—can be mistaken for meningitis.
In adults, up to 40% of people with T1D may initially be misdiagnosed with type 2 diabetes.
This misdiagnosis is often linked to an increased risk of developing DKA. In fact, DKA is the second most common way that T1D presents, occurring in 30% at diagnosis. However, this incidence can range from 15% to 70%, with younger children being more likely to develop DKA.
What does this mean?
- The symptoms of T1D are often subtle and non-specific, leading to delays in diagnosis. Learn more here (and in Spanish).
- Lack of awareness and limited access to testing contribute significantly to missed or delayed diagnoses.
- Raising awareness of T1D and improving access to testing worldwide is an ongoing and critical challenge, but potentially surmountable. The more conversations that are had formally, through education and informally, through diagnosis stories, the knowledge gap can be bridged.
