The path to diagnosis began with our awesome pediatrician ordering an A1c blood test for our daughter during her routine 10-year-old exam. She only told us after Rae’s t1d diagnosis, not to alarm us, but she ordered the test because she knew that children with one auto-immune disease are at a significantly higher rate of having another. Our daughter has vitiligo.
Her A1c was 5.6%. The pediatrician, being a great doctor, was wise to order an A1c for our son at the same time to use as a benchmark against our daughter’s result. Based on his result, she called endocrinology at Seattle Children’s to set an appointment for our daughter. The team at SCH pushed back and told our pediatrician there wasn’t enough to warrant a meeting with them. Our daughter’s doctor persevered and they reluctantly set an appointment.
On the day of the appointment, the physician’s assistant was quick to tell me and my daughter there was no way she had type 2 diabetes, which I assume was based on our daughter’s weight considering there was no clinical exam before she made this statement. After the exam and inquiring about any of the typical signs and symptoms associated with diabetes and our responses thereafter, she said our daughter didn’t have diabetes. She told us she was only ordering the antibody tests to make sure our pediatrician ‘felt good.’
You can only imagine my surprise when I received a call from this same PA two days later. She immediately and profusely apologized for getting it wrong. She explained that not only did our daughter test positive for one of the known antibodies for type 1 diabetes, but our daughter had tested positive for all four antibodies tested.
I was completely dumbfounded and numb. Just two days ago, this expert on diabetes – she had worked as a PA in the diabetic clinic for 15 years – had made it abundantly clear: there was no way our daughter had diabetes and our pediatrician was unnecessarily alarming us.
It’s not lost on me or my wife that for many parents of t1d kids, their path to diagnosis is scary and very sudden and is usually learned when their child arrives in an emergency room. We’re grateful for having such a wonderful pediatrician and are lucky she was tenacious and pushed Seattle Children’s to even accept her referral.
We met with the PA that afternoon. She mentioned that she couldn’t recall any patient getting diagnosed with type 1 diabetes this early in the disease stage. Our daughter wasn’t presenting with any of the typical diabetes signs or symptoms and her A1c didn’t yet meet the diagnostic criteria for diabetes. Of course, this was a blessing and in some regards frustrating, which I write about in another blog here.
Our daughter’s pancreas was still producing insulin and she didn’t yet need insulin, but they started her on a continuous glucose monitor – Dexcom. Our 10-year-old daughter was having to grow up fast and shoulder a tremendous amount of responsibility. Rae is one tough and mature girl and I always hate using the word ‘girl’ in this sense because it just diminishes her strength. She’s one tough young woman and that’s also a struggle because at just 10 years old I’d prefer that she could remain more carefree. I guess in sum: Rae is a badass and I’m so very proud of her every day.
On that diagnosis day, we were furnished with some pamphlets and provided some basic information on diabetes from the PA. Dexcom was explained and attached that day. Just writing this post recalls so many emotions from that day. Just now I realize that I never had the time to experience those feelings because it was so hard to remain present at the moment.
Of course, I was trying to remain stalwart for my daughter, but I remember also thinking about how this was going to impact Rae. I think I was trying to feel what I assumed she must have been feeling at that moment instead of experiencing my own. My little girl needed her dad that day and I was only focused on doing that. Wow, this brings me back to that moment and I’m flush with so many emotions. I know my experience that day wasn’t unique and I have empathy for all parents who’ve had similar experiences.
My wife and I spent the evening separately Googling everything and anything surrounding type 1 diabetes. We were educating ourselves in real-time and it dawned on us at that moment: Did Seattle Children’s provide us with all the relevant information we needed? Could they have done more?
I discuss best practices for newly diagnosed type 1 diabetics in this post here.