Why Are So Many Kids Dying From Undiagnosed Type 1 Diabetes?

06/24/2016 05:14 pm ET Updated Jun 21, 2017

An Open Letter To The Non-Diabetes Medical Community At Large and All Parents With Kids of Every Age, Everywhere!

Dear pediatricians, nurses, medical staff, medical office personnel, hospitals, hospital staff, school nurses, physicians, ER medical staff, urgent care facilities, and any other medical office/facility that treats sick kids:

I have a question for you. Why are so many kids dying from undiagnosed Type 1 diabetes? Why are they not being tested for Type 1 diabetes when their parents bring them to you when they're sick? I know that sometimes, Type 1 symptoms can be similar to the flu or a stomach bug, so as a matter of caution, why can't a 5 second finger stick be done as a matter of protocol just to try to potentially rule out the chance that it could be Type 1 diabetes instead of the flu? Why?

Yes, I know, I know. You're extremely busy, understaffed, and buried in mountains of paperwork at your medical offices. I get it. You're working twice as hard for half as much, (or less- I'm a woman, so I get that too, but I digress) and you have to carry outrageously expensive liability insurance, etc. Yes, I get that too, loud and clear.

Welcome to the club.

We are busy too and many of us experience similar situations in our businesses as well. But, that is a lousy excuse for not trying to rule out Type 1 diabetes in your little patients who are counting on you to help them when they are sick. It was you who chose a profession that is designed to take care of sick people. So, take care of sick people.

I'm Trying To Figure This Out

Countless healthcare professionals have told me that their patients (or parents of patients) are much more informed and that these patients often come into the office with health information printed from online resources. So, are you waiting for the parents of sick kids to educate you on Type 1 diabetes? Is that it? Are you looking to them to prompt you? Educate you? Make you aware?

Or is it the money? Is it the $1 finger stick? Maybe you don't have a billing code for the $1 finger stick? Is that it? No billing code for a $1 finger stick? Hey I have an idea, why not ask the parents to dig into their pockets and come up with the $1 if that's what it takes. I'm sure they could even find the 4 quarters in their car?

Maybe it's your perceived lack of time? It takes about 5 seconds for a finger stick test. So, is that it? Is an extra 5 seconds too much time to potentially rule out Type 1 diabetes? Let's say you see 20 patients a day and 10 of them are sick and seem to have a flu or stomach virus. That's 10 x 5 seconds. 50 seconds a day. Okay, we will round it up to 60 seconds. 1 minute per day.

I have a bumper sticker that says Apathy = Consent. Perhaps you just don't think it's that important? Is that it? You just don't "see it?" Maybe you think it doesn't happen that often? So, supply and demand? Could that be the problem here? The supply and demand of sick little kids who might have Type 1 diabetes? For your information, Type 1 is on the rise so it is imperative that you understand and educate yourself on this condition.

I have a thought; maybe you just don't like being told what to do in your office? Could that be what the issue is? You worked long and hard to establish your business and absolutely no one is going to make you set a protocol in your office? No mandates for you! Am I on the right track? Is this sounding familiar? If so, does this apply to doing the right thing as well? Does it?

If its none of the above, then WHY, in the 21st Century, do little kids have to die after being sent home from your offices and facilities once being told it's "probably" the flu that is going around or a stomach bug, only to die from undiagnosed Type 1 diabetes? If not, then, what is it? I'm truly at a loss here. Can someone please explain this to me? Hello??? Anybody listening?? HELLO???

What is going on here?

Ok, if I'm wrong, then by all means, set me straight. Yell at me! Be appalled! Be indignant! But please help me, and those of us trying to do something about this tragedy, to understand where the problem emanates. HELP US uncover the gaps so that we can try to address the obstacles and push backs from wherever. There have been countless articles written on this tragic subject so WHERE IS THE DISCONNECT HERE??? Help us understand this. If I am way off base, then by all means, just tell me what the issue is. I'm listening. Are you???

As a member of the medical community who took an oath to help sick kids, can you tell me why so very few of you seem to be listening? Why does it seem that so few act on such an incredible opportunity to potentially rule out a condition that can kill little kids? Even if it is caught "in time" sometimes the damage is irreparable and devastating.

Differential Diagnosis

Remember this? "In medicine, a differential diagnosis is the distinguishing of a particular disease or condition from others that present similar symptoms." Terri Lipman, PhD, CRNP, FAAN, of the University of Pennsylvania School of Nursing says, "The incidence of Type 1 diabetes in children younger than 5 is skyrocketing. Diabetes is not something parents and primary care practitioners tend to think of in very young children, but should be part of the differential diagnosis of all young children who are ill. If providers do not consider diabetes as a possible diagnosis when a child is ill, the diagnosis will be delayed, and the child will be in danger."

What is the Procedure In Your Office?

When a child is sick and comes into your office, what is the procedure? I'm guessing, one of the medical staff gets the child's chart, then goes to the waiting room and calls out their name. Then they are taken back to an exam room where their vitals are checked. Am I correct so far? A kid is sick with what seems like the flu or a stomach bug and so you check the vitals? Swab throats? Look in their ears? Well, when checking these vitals, why not simply add a quick, 5-second finger stick? It could possibly save a kids life. It's not that complicated. Standard procedure. Every time. Period. By the way, we need action, not agreement, from you and your office. Education and awareness is simply not cutting it here.

Don't Be That Office

In my opinion, the problem lies squarely with you, the non-diabetes medical community at large who is either uneducated about the symptoms of Type 1 diabetes (and the basic difference between Type 1 diabetes and Type 2 diabetes) or unwilling to see the need and do anything about it in your offices. I actually don't know which is worse.

Now that you know about this, I trust that you won't be the office or facility who sends kids home to die. I trust that, by reading this, you will set a protocol in your office or facility. I trust that you will talk with your colleagues about this.... Yes? Hello??

Dear Parents:

It seems our non-diabetes medical community has failed our kids on this issue, so until they begin to care about this, it is necessary for you to educate them when you can. It's not paranoia to ask for your child to be screened for Type 1 diabetes when they are sick. Make them rule it out and check it off the list. If your child has undiagnosed Type 1 diabetes, they can die. It's as horrible and simple as that. And unfortunately, it doesn't take long. Use your parental instinct. If your child seems to have the flu but your gut is telling you it's more than that, start yelling for them to test your baby. It could literally save their life. Tom Karlya, a diabetes Dad and tireless advocate says: "One child is too many, and it certainly has happened too often, when a child's T1 diagnosis is missed, a child can, and has, gone into DKA and gets very sick and in some cases, has died."

Hold Your Horses Diabetes Community!

In the diabetes community, we are loud and confrontational when it comes to education, awareness, healthcare access and safety. We drive change. But, let me be clear, my dear, fellow diabetes tribe members, there is no need to come after me about how great your diabetes doctor is or how you or your child were quickly diagnosed and set on the right course immediately. You see, those healthcare professionals are not the members of the medical community that I'm speaking to. They get it and thank God someone does and thank God you were one of the lucky ones.

I'm speaking to the non-diabetes medical community at large here. I'm not saying that nobody out there does the right thing, just that it's not a standardized protocol for many in our medical community. So don't dilute this message by posting how much you love your doctor and Peg's whining again and off base. Rather, post this on your social media sites, help spread the word to the non-diabetes medical community that there is a great need out there. Maybe, just maybe, you can help save the life of one of your fellow little tribe members? All you need to do is talk with one parent or family member of a child who went undiagnosed and died, and well, that's when the gloves came off for me personally. If this article saves even one life, then it is worth the ire I will get from the non-diabetes medical community for writing such a harsh letter.

We Are So Sorry We Let You Down!

I am asking you to click on the links below, read the stories and see the faces of these beautiful children who have passed away. Unfortunately there are many more.

Kycie, 5 years old
Baby Reegan, 16 months old
Hailey, 10 years old

People Are Trying To Do Something, But They Need Your Support:

You guessed it. These organizations are made up of parents of kids with Type 1 Diabetes. Please support their efforts and hear their voices.

Thanks to Cindy Turner!

Thanks to Betsy Ray!

Some good legislative news!

A California Senator who is listening! Thank you Senator Richard Roth!

Read about Reegan's Rule here!

I Had No Choice

I really had no choice but to write this article. As an adult with Type 1 diabetes, (Not Type 2!) I deal with the misconceptions of the differences between Type 1 and Type 2 all the time. NO, I did not eat too much sugar. NO, loosing weight and exercising will not make it "go away." YES, if I don't have insulin every day, including days when I'm not eating due to illness, etc., I will die. Period. No matter what I weigh, or how much I exercise, or what I eat, I need insulin to survive.That's Type 1 diabetes! We've come so far with diabetes advancements, awareness and education. Why is this still so hard for the non-diabetes medical community to understand?

In Conclusion

I live with Type 1 diabetes and walk the balance of life and death every single day of my life. And I'm asking you to show the world that you heard this message and that 5 seconds is worth potentially saving the life of child sitting in your office right now. It's time to look at the man/woman behind the curtain. So, I'm pulling back that curtain in an effort to ask WHY? Who? Where? Please set a potentially life saving protocol in your office.

Go ahead. I triple dog dare you.

Thank you for listening. Peg

The opinions expressed here are my own and not necessarily the opinion of any public or private organization or individual.

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