After I read Moria's McCarthy's post titled, Undiagnosed Diabetes and a Plea to Take Action (The one where I go all public service a again), I contacted Moira to see if she would allow me to repost her important words in their entirety. She was happy to oblige. Many years ago I was a parent who was unknowingly watching his daughter slowly die from undiagnosed type I. When we finally were able to deduce what was happening to Arden and arrived at the hospital, the doctors told Kelly and I that we figured out the mystery with about twenty-four hours to spare. He estimated that Arden was just a day away from slipping into a coma. I wanted to share this message as far and wide as possible in hopes that it may help another family to avoid an unthinkable heartbreak. I hope that you link to, like and share this information liberally.
What follows is Moira's piece just as it ran on her site.
Guest Post: Moira McCarthy on Undiagnosed Diabetes
A week ago today, a 13-year old boy who lives in a normal middle class town and has smart, caring parents and who is surrounded by teachers and nurses and coaches a friends, died of the complications of undiagnosed Type 1 Diabetes.
And it happens all the time. When it happens, people say all kinds of things. Why didn’t the parents know the symptoms? Didn’t the doctor do a test at his annual check up? How could the school not see?
But here’s the stark truth: We are not properly equipped as a society to keep this from happening. And happening again. And listen: we are America. We have free internet just about everywhere and fresh cupcakes out of kiosks. Yet we don’t have even a basic system of information that alerts parents, teachers, nurses, doctors and just plain everyone to what the signs and symptoms of Type 1 diabetes can be.
Think it only happens to the clueless? Look, I’m not Einstein, but I’m relatively smart. I read lots of parenting books and even edited a parenting publication. I’ve sat down and interviewed T Berry Brazelton and yes, even Dr. Spock (not the Star Wars one, silly!) before he died. I’ve met Fred Rogers and talked parenting, and I always had a mom group for discussions as my kids grew up.
But undiagnosed diabetes very well could have killed my daughter. I shared our diagnosis story HERE but I’ll remind you of this:
Lauren had almost all the classic symptoms of Type 1. Excessive thirst. Urination issues. Weight loss. Irritability. Now let me tick those off in the head of the average parent who has never been educated about the signs of Type 1 Diabetes.
Excessive thirst: It was the end of summer and a hot one at that. Lauren and her friends were always running around and playing. Yes, she was drinking a ton, but to me, it was the heat. I chug down water as it is. Made sense to me. Even if it was kind of odd.
Urination issues: I know it sound silly now, but I never sent either of my kids to pre school. I took a lot of heat for that on the playground. Moms were always saying my kids would never catch up and that they’d be traumatized when they started kindergarten because all the other kids would be so well adept and my kids would be floundering. So when Lauren started wetting her bed, a friend said, “I told you that no pre school thing would take its toll.” Kindergarten was the reason. I was a bad mom. I actually believe that. I wasn’t alone there. Her kindergarten teacher – whom I adore and still do – pulled me aside one day when I was in volunteering and said “I don’t think Lauren likes school. She’s constantly looking for reasons to leave the room. It’s the water fountain or the bathroom. You might want to talk to her.” This is a top-notch teacher, by the way.
Weight loss: She was growing taller. And thinner. I (believe it or not if you know me now) was always rail thin. My husband still is. So to me, it was just how she was growing. It was not until her school pictures (taken three days before her diagnosis) came back; Lauren with her weak smile and her clothes almost falling off her, that I felt shame. How could I not have seen it? But I didn’t. When you are with a child every minute, the change might not be as noticeable.
Irritability: The week before her diagnosis I was absolutely convinced I was a horrible mother and that somehow, I’d done something to morph my delightful child into a monster. At my older daughter’s soccer game, I was so at wit’s end with her behavior that a friend separated us and took her for a ride. A few days before I had lunch with my dear friend Jean. Lauren came along. Jean bought her a giant cookie and Lauren said she’d take it home. When Jean got home she found it in the car, forgotten. And thought about how oddly Lauren had behaved that day. Not like the kid she knew. When it all went down Jean told me she remembered thinking “strange. Something is strange.” Jean has four amazing kids Even she did not see the connection.
It was all right there in front of me. My daughter did not die. That god in heaven she had an annual check up scheduled (which I almost carried her into and she was rushed to the hospital from). Would she have woken up the following morning had I not had that appointment? Thank goodness I’ll never know the answer. And if she had not had that appointment, would I have caught on enough to call her pedi? I don’t know. (I will say this: the moment I got in the door of the pedi’s that day and rattled off what was going on, they KNEW. That office would never have not made the diagnosis if I’d been educated enough to know the symptoms).
So let’s say her check up had been six months before. Would a screening or test at that have shown Type 1? Probably not. Type 1 can come on slowly, but it usually comes on pretty quickly. So while I absolutely believe that screening should be done at each and every check up, it’s not nearly enough.
What we need is a way for everyone to know the symptoms. So share this. Share it with your teachers, your nurses, your doctors and your friends. Any time you have a friend with a child who has a stomach bug or even one symptom, mention Type 1 diabetes and ask them to read up on the symptoms.
And to take it a step further: call on all the diabetes centers, programs, charitys and groups to step up their symptoms awareness programs.
Do this: Become vigilant. Overreact. Obsess if you want. If you know someone who you see symptom(s) in, force them to take action. A blood glucose strip costs a buck. I’d pay that times a million to keep that person alive. Because even if we just save one single child from a completely unnecessary death, we’ve changed the world.
I’m a caring, capable and educated mom, and yet: It could have been Lauren. Luck is what saved her. Let’s save the rest of the world with something more solid: Knowledge. We are better than this. Let there not be one more unnecessary, completely avoidable death from diabetes.
