Not Your Grandma’s Diabetes

This is an umbrella title – not meant to offend, but to make the point that Type 1 diabetes is NOTType 2 diabetes. In the early days of Ava’s diabetes, many people I talked to would say, oh! My granddad has that. Or, my whole family has diabetes. (Yes, she really said that.) Others asked me, so did the doctors say when she’ll grow out of it?

So, let’s review. Type 1 diabetes is an autoimmune disease. The process that starts it cannot be stopped, slowed down, or reversed. You cannot outgrow Type 1 diabetes. Symptoms at onset are similar to those of Type 2, yes, but that’s where it ends. Because…

Once symptoms present in Type 1, they cannot be ignored. Once the autoimmune attack on those cells that make insulin in the body begins, there is no weapon in any arsenal that will halt its progress. This is an unfortunate war where the enemy wins, every time.  And it wins fast.

So, as I’ve said, you cannot ignore the symptoms because Type 1 diabetes will march on until you take notice. I wrote our story several years ago. Recapping – I noticed 2-year-old Ava emptying sippy cups and saturating diapers for about a week. She slept in my bed and there were at least 2 nights where her diapers overflowed and the bed became wet too.

There was also a moment when she was in the bathtub where I looked at her tiny frame and thought she looked thin. She was thin – how could a mother miss that?? And still… I racked my brain. What could this be? What is it that causes thirst like this? I didn’t want to think too hard. I tried to put it out of my mind, and not be that hysterical mom – you know the stigma of the hysterical mom doctors roll their eyes over?

But, Type 1 diabetes works fast. Symptoms can only be ignored until the emergency presents itself. And, it will. In our case, on the last day she was extremely lethargic (which, left untreated, becomes coma, or worse) and then she began this rapid, shallow breathing. These are classic signs of diabetic ketoacidosis (DKA). Her tiny body was thirsty and urinating out the ketones(a toxic buildup in the blood as the body is losing its ability to convert sugar into energy) constantly, and when that didn’t work – her breathing became rapid and shallow in yet another effort to expel these ketones. (This is the “fruity” or “acetone” odor on the breath.)

We were extremely lucky to have gotten her to the doctor that day, and that our pediatrician knew the signs and tested her blood sugar with a simple finger stick in her office. She knew immediately, and she sent us to the ER directly. Ava’s blood sugar was 416 (normal is 80). She wasn’t out of the woods yet – as she was in DKA and thus required the constant monitoring only the PICU can provide. But 24 hours, a dozen blood tests, multiple pupil-checks overnight, and God-knows-how-many-units of insulin later – she was sitting up and the color had returned to her skin.

Not every child has been so lucky. This year I’ve seen tragedy strike several times across the nation. These tragedies could potentially have been avoided, had doctors not assumed these illnesses were just a virus or flu and had they just performed a single, simple finger stick test.

In January of this year, a little girl named Kycie began complaining of headache. On Monday, she said her tummy hurt and she threw up. Assuming it to be a bug, her parents gave her fluids and she slept all day. On Tuesday, her brothers also began complaining of stomach aches and sore throats. On Wednesday, her mom took 5-year-old Kycie to the doctor, who gave antibiotics for strep throat. On Thursday she was much worse. On Friday, she went back to the doctor and then to the ER, only to be life-flighted to a children’s hospital where her blood sugar was 1148.

On the way to the hospital, Kycie suffered a seizure, and then another one when they got there. She became unresponsive and an MRI later showed that her brain had herniated into her brain stem, and she had extensive brain damage. If she survived, she would be severely handicapped. Kycie didn’t survive.

There are countless stories of children being misdiagnosed with viruses or flu at their primary care providers, only to later become very sick and end up in the emergency room with the diagnosis of Type 1 and DKA. This is why many of us are campaigning for more awareness of the symptoms and for doctors to perform a simple finger stick test at the very least when children present with illness (though some are pushing for legislation to have routine screening for Type 1 diabetes).

You can shove your head in the sand and shrug it off – I don’t know anybody with Type 1 diabetes, or, it will never affect our lives. But, the fact is that Type 1 diabetes is on the rise (affecting both children andadults) and no one knows exactly why.

According to the JDRF, there has been a 21% increase between 2001 and 2009 in the number of people under the age of 20 with Type 1. Approximately 40,000 are diagnosed each year, and it is estimated that by 2050 there will be 5 million people with Type 1 diabetes – of them, about 600,000 will be children.

So, what can YOU do? Please know the signs and symptoms of Type 1 diabetes AND share them, which are

  • Extreme thirst.
  • Frequent urination (including bedwetting)
  • Drowsiness/lethargy
  • Fruity (or acetone) odor on the breath
  • Sudden weight loss (even with increased appetite)
  • Abdominal pain with or without nausea and/or vomiting.
  • Heavy or labored breathing
  • Stupor or unconsciousness

There are a handful of grassroots organizations working hard to bring awareness to this life-threatening disease – Test One Drop’s  mission is as simple as its name implies. Testing just one drop of blood with a glucose meter is a quick and inexpensive way to detect the onset of Type One diabetes before diabetic ketoacidosis (DKA) can take hold. 

Test One Drop wants you to know that undiagnosed or misdiagnosed Type 1 diabetes can quickly become life-threatening, sometimes in less than 24 hours, and even fatal.

Unfortunately, many pediatricians do not routinely screen patients for diabetes – such as the finger stick test with a glucose meter – and so, while others are trying to organize legislation for such screening and/or education of parents, it falls on us to know the signs and request the test.

Test One Drop also shares signs and symptoms of Type 1 often unnoticed, but usually present before diagnosis:

  • Headaches
  • Extreme hunger (even in the presence of weight loss)
  • Unintended weight loss
  • Irritability or mood changes
  • Fatigue and weakness
  • Vision changes, or blurred vision
  • And two others I, myself, was unaware of:
  • Itchy skin and genitals
  • Vaginal yeast infections 


Again – please note the signs and symptoms. Share them. You just may save a life.

Thanks for reading. We’re all pressed for time and I try to be concise and short, but there was a lot to this post I needed to include.
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