Type 1 diabetes for dummies...

Originally posted in December, 2011 - updated 4/30/2012

The fun of diabetes is you never really know what the next day, meal, or activity is going to bring. One day everything is working just peachy, and the next day nothing works right. You can drive yourself nutso trying to figure out why, or you can just accept that diabetes has a mind of its own. My daughter has had some incredible weeks of near perfect numbers. Then she'll go into the next week and have blood sugar in the 400's, or the 40's - and we didn't do anything different.

That's the nature of type 1 diabetes. And it's the absolute hardest thing to explain to someone who doesn't live with it every day. We are conditioned to believe that illnesses, from colds to flu to chronic illnesses like asthma, can be resolved with a few pills, drinking some nasty liquid, or sucking medicine through an inhaler periodically. So most people assume that type 1 diabetes is essentially the same, the only real difference is the delivery method - shots or an insulin pump. What's so hard about that?

I've had more than one person say to me, when I mention that my child wears an insulin pump, "oh good, so she'll be fine then!" Uhhh. No. Soooooooo much no.

The pump is only a delivery system, it doesn't do a thing without our direction. And do you know what a normal pancreas does? It delivers insulin when you need it and as much as you need. It anticipates when you'll need less, like during exercise for most people. It anticipates when you'll need more, like for Sarah when she's sleeping.

A person with type 1 diabetes has a pancreas that fails to produce insulin. It's broken. It just sits there spewing out other chemicals, but not doing diddly squat to regulate blood sugar.

So what, your blood sugar isn't regulated - what does that mean?

I'll admit, I suck at remembering to take my own medicine. I take a pill daily (ahem, usually), but if I forget, nothing too serious happens. The pill regulates my thyroid, but if I forget I don't notice any difference in my body, and make up for it later.

Diabetes is NOTHING like this. If a person with type 1 diabetes forgets to take insulin for a meal - or if their pump isn't working, or the insulin is bad (ineffective) or if they miscalculated the carbohydrates, they could very well end up spending that night in the hospital. If the pump stops functioning, they could end up with diabetic ketoacidosis, and a stay in the Intensive Care Unit within just a few hours. (Note, this can also happen from a simple flu, food poisoning, or anything else that disrupts eating or causes vomiting)

And insulin isn't just needed for food, as many people assume. There are two types of insulin infusion (for a person using an insulin pump); basal insulin is small increments of insulin sent into the body every few minutes through the day, and bolus insulin is the insulin taken for food. The amount your body needs changes dramatically through the day, and with activity, and with weather, and with green underwear. A person might have five or six basal rates through the day and night. Sarah's basal rate (the units of insulin per hour) range from 0.075 to 0.6. So at a certain time of day she's taking nearly 10x the insulin she takes during another part of the day.

Weird huh?

And does the pump automatically adjust for the amount she needs? NO! We have to adjust it ourselves. The pump just follows our instructions.

Okay, so what?

Healthy blood sugar ranges vary. Most consider under 70mg/dL low (meaning the person needs to get some sugar into their system, usually by eating or drinking a fast acting carbohydrate), and over 200mg/dL high (meaning there is too much sugar in the blood and the person needs more insulin to bring it down). A normal blood sugar for someone without diabetes is probably around 70mg/dL-130mg/dL. I've tested myself quite a few times, and I've always been within this range.

If blood sugar remains low for too long, a potentially fatal condition called hypoglycemia develops. This is the reason most parents of kids with diabetes walk around with toothpicks holding up their eyelids. Because the only way to be sure hypoglycemia is not occurring, is to test the blood during the sleeping hours, especially for kids who don't wake up when they have symptoms of low blood sugar. Symptoms may include lethargy, impaired mental functioning; irritability; shaking, twitching, weakness in arm and leg muscles; pale complexion; sweating; paranoid or aggressive mentality and loss of consciousness. Brain damage and death is even possible if the episode isn't corrected soon enough. Thus, toothpicks.

If blood sugar remains high for too long, diabetic ketoacidosis can occur. The symptoms of an episode of diabetic ketoacidosis usually evolve over a period of about 24 hours (but can be significantly less, especially for those using an insulin pump). Symptoms are nausea and vomiting, pronounced thirst, excessive urine production and abdominal pain. Severe DKA can often mimic the symptoms of a flu, and sometimes accompanies a flu. A simple flu virus often leads to hospitalization for a person with type 1 diabetes. This is why I start to sound like a raving lunatic when Sarah's blood sugar is high for an extended period of time.

So, my point is..... that keeping blood sugar in any sort of healthy range is very difficult. A single gram of carbohydrates will raise Sarah's blood sugar about 4mg/dL. In a single, normal day, her blood sugar ranges from around 80-220mg/dL. A normal meal is about 60 grams of carbohydrates which, without insulin, would bring her blood sugar from, say 100mg/dL to 340mg/dL. 340mg/dL is more than enough to start DKA if we don't get it back down. And the higher she is, the more resistant her body becomes to the insulin, and she might needs twice as much to bring her blood sugar back into a healthy range. Oh, and she's going to start feeling like crap forthwith. Really.

Oh... and let's not forget that every dose of insulin is essentially an educated guess. Yep. There's no magic formula. Every single time my child eats and we give her insulin, we really don't know where she'll end up. We know where her blood sugar ends up, on average. But each time is basically a crapshoot.

And you wonder why my brain is stuck in diabetes mode much of the time...

But why should you care? I mean, it's genetic or something, right?

Not so much.

Sometimes type 1 diabetes does run in families, and sometimes it's completely random. It used to be called juvenile diabetes, which was really dumb because it doesn't just affect juveniles, and it certainly doesn't magically disappear when you're no longer a juvenile. Whether you're a month old, ten years old, 25 years old, 50 years old, or 75 years old, you can be diagnosed with type 1 diabetes. Sometimes it comes on very suddenly, sometimes over a period of months or years.

You should know the symptoms, because chances are you will know someone who is diagnosed with type 1 diabetes, and if you know what to look for, you can save a life. People often die from undiagnosed diabetes, because severe DKA can look a lot like a bad flu. And really, who wants to head for the hospital when we think we just have a flu?

So my hope is that some folks (besides my friends in the toothpick club who know this as well as I do) will read this, learn something, and pass a little truth on. When people understand type 1 diabetes, then kids like mine are understood, treated with more respect, and provided with the tools and opportunities they need to be the best they can be.

And if you made it this far... thank you!!!

In order to improve our ability to help keep Sarah safe, she will soon be getting a diabetes alert dog. If you are interested in helping Sarah with this, please visit her facebook page at https://www.facebook.com/ADiabetesServiceDogForSarah or her website at www.pawsforsarah.com