The past month has been a nightmare for our family, in a way that only a parent with Type 1 Diabetes can possibly understand. Since Keaton’s diagnosis, I have lived in a state of near-constant terror, unending worry, and utter exhaustion. But most people who read that will ask “Why? He’s on insulin, so his diabetes is under control now. He’s as good as cured.” What we have discovered is most people just don't understand how much Type 1 diabetes sucks.
This blog is an attempt to help everyone in Keaton’s and our life to understand exactly what we’re dealing with, why insulin is not a cure, what they can do to help, what doesn’t help, and why this seemingly easily treatable disease has taken over our lives.
What Type 1 Diabetes Isn’t
Like most people, until Keaton’s diagnosis I was completely ignorant about Type 1 Diabetes, despite having a step-sister living with the disease since her early teens. Like you, I thought as long as you checked your blood sugar, cut sweets out of your diet, and took your insulin on time each day, you were fine. I quietly passed judgment on the mom who let her diabetic daughter eat a ding-dong, analyzed the fitness and diet habits of kids with diabetes and blamed the parents. I was completely wrong.
Type 1 Diabetes Isn’t Type 2 Diabetes
Ninety percent of people with diabetes have Type 2. Which means ninety percent of the information most people have about diabetes is about Type 2. But Type 1 diabetes and Type 2 diabetes are completely different disease processes. For instance, most people with Type 2 diabetes do not require insulin and can manage their diabetes with diet, exercise, and sometimes oral medications. Type 1 patients must have injected insulin to survive. So forget everything you think you know about my child’s disease. It’s probably incorrect.
Although there is a genetic factor to Type 1 Diabetes, most patients have no family history. Type 2 diabetes is highly familial, but a family history of Type 2 diabetes has no affect on your potential to get Type 1. Also, unlike Type 2 diabetes, there is nothing you can do to reduce your risk or prevent Type 1 diabetes. This disease is not caused by a sedentary life, poor eating habits, or obesity. We didn’t cause it. Keaton didn’t cause it. Period.
Type 1 Diabetes Isn’t the End of a Sweet Tooth
Of course, part of Keaton’s health plan includes a meal plan that is consistent with a nutritious lifestyle. But it is no different from what any other 7-year-old should eat. The only thing Keaton cannot have is regular soda or sugary drinks like KoolAide or regular lemonade. We have to watch his intake of concentrated sugar, such as candy and cake icing, but they are in no way forbidden.
Type 1 Diabetes Isn’t Cured by Insulin
If I hear one more time “at least he has something that he can take medicine for,” I will probably stab them with a syringe. Insulin does not cure diabetes. Keaton will have diabetes for the rest of his life, and unless a real cure is found, he will require injectable insulin forever. And Type 1 diabetes isn’t instantly controlled just because you give your child a few shots a day. The required doses change sometimes hourly, with different calculations based on what Keaton is eating, what time of day it is, what his activity was like beforehand, what activity is expected after, how he’s feeling, what his blood sugar is, what his blood sugar was an hour ago, and whether he had a spelling test that day. Which means he often doesn’t get the precise amount of insulin his body needs at that given point in time, and his blood sugars can bounce from too high to too low and back again, wreaking havoc on his body. I’m finding there is no such thing as “well-controlled” diabetes. It’s a myth.
Type 1 Diabetes Isn’t a Death Sentence
Even as recently as ten years ago, people with diabetes could expect a shortened life span. With careful and vigilant management, however, this is no longer the case. Nor does his diagnosis mean he will eventually go blind, lose a limb, or suffer organ failure. As long as we are careful to watch his blood sugars and always respond to them, he can live a very healthy life.
What Type 1 Diabetes Is
So if everything you thought you knew about diabetes is wrong, just what is going on with my kid? To understand that, you need to know what insulin is. Insulin is a hormone produced in the pancreas that allows your body to convert food into fuel. Without insulin, the body cannot use food for energy, and no matter how much you eat, you will starve to death. Which is exactly what happened to children with Type 1 diabetes before the 1920s when replacement insulin became available.
Type 1 Diabetes Is Lame
That’s a phrase we heard a lot from Keaton at the hospital, and we couldn’t agree more. In fact, it’s become our family motto. Diabetes is lame, and it affects Keaton emotionally as well as physically. This means he may act out from the stress from time to time—even when he seems to be coping fine. So please be patient with him. This isn’t something that he will “get used to” or “will become normal for him.” Kids with Type 1 diabetes can suffer depression and burnout years after diagnosis. Telling him he “should be used to it by now” is counterproductive.
Type 1 Diabetes Is an Autoimmune Disease
An unknown factor turned on a mutant gene in Keaton’s DNA. This caused the T-cells in Keaton’s immune system to get confused. And the bastards started attacking the Insulin-producing beta cells in the Islets of Langerhan in his pancreas. Which basically means they started killing the cells that make insulin. Over the course of the next year or so, his T-cells will effectively wipe out all of Keaton’s insulin-producing cells, and he will be utterly incapable of making his own insulin. Currently, his remaining beta cells are overworked and failing, so he needs replacement insulin to supplement the lack.
Type 1 Diabetes Is Unpredictable
There is no magic number of carbohydrates to eat or insulin to take to keep blood sugars in range. As I mentioned before, Keaton’s insulin needs change hourly based on a wide range of factors. Which means he can easily fall into dangerously low or high blood sugar ranges quickly and without much warning. This means anytime he is doing anything off his normal routine he has to check his blood sugar even more than normal. Highs and lows, even slight highs and lows, can also affect his behavior unpredictably. If he is lashing out, acting strangely complacent, combative, or “ditzy,” please make sure he gets his blood sugar checked!
Type 1 Diabetes Is Dangerous
Most people believe that as long as you “control” diabetes, it isn’t dangerous. This simply isn’t true. Even the most tightly controlled blood sugars can drop or spike suddenly into dangerous ranges. A very low blood sugar can cause brain damage, coma, or death. A very high blood sugar can cause an emergency situation called ketoacidosis, in which the liver basically dumps poison into the bloodstream. This can even happen with normal blood sugar when Keaton is sick. Ketoacidosis can cause organ failure, coma, and death. Keaton may never experience such extremes in blood sugar, or he could struggle with both situations regularly. So yes, diabetes is dangerous. That’s what makes it so scary.
Type 1 Diabetes Is Exhausting—For Everyone
At times when his insulin dose is being adjusted, which can be as frequently as once every few days or even every day at times, Keaton may need to have his blood sugar checked in the middle of the night, or even every two hours at night. Nights like that are exhausting for all of us. Type 1 diabetes is also emotionally exhausting.
This is our typical day: We wake up and take Keaton’s blood sugar. Then we make breakfast and calculate how many carbs he is likely to eat off his plate, calculate his insulin dose, cajole him to finish everything we gave him insulin for, then log his blood sugar, food intake, and dose. Then I make his lunch and calculate his lunch carbs, write him a note about what he has to eat from his lunchbox, calculate his lunch insulin dose, calculate his snack carbs and snack insulin dose, and write a note to the nurse detailing any changes in his dose calculations, his dose for lunch and snack, and any special circumstances she needs to know, like an overnight low or morning high. Then I send him to school and spend the day worrying about how he’s doing, reading books and websites about diabetes, researching camps and activities, calling the doctor about any weirdness in his blood sugar values….oh and trying not to ignore the other kids. When he gets home, we check his blood sugar again, calculate and give him insulin for an after school snack, and log his blood sugar and insulin dose. Then I open the email from the nurse about his daily nurse visits (there are usually 3-4), blood sugar readings at the time, correction doses of insulin given, and any other notes. I log all this in his logbook. Then I start thinking about dinner. While I cook, I try to figure out how much of each food he will eat so I can calculate his carbs, then set the table and set out his supplies. As everyone gathers for dinner, we check blood sugar again and calculate and give insulin. Then we once again push him to finish everything on his plate that he got insulin for. An hour and a half later it’s another blood sugar test, nighttime insulin, and a snack if his blood sugar is too low for bedtime. And with all this obsessing about Keaton’s eating habits, we often forget to eat ourselves. By 8:30, we are usually too tired to move.
Helping Out
We have been blessed by an outpouring of support from friends and family, but the fact is, as with any family crisis, some types of support are more helpful than others. Please don’t be insulted by the things I say don’t help; if it’s here, it isn’t because one person did it but because many did. They are natural reactions for most people (and would have been mine before all this). But instincts to help are often off.
What Helps
Calling sometimes to see how Keaton is doing, and how we are doing. We will all continue to struggle emotionally with this. It’s nice to know we aren’t struggling alone.
Asking if there is anything you can do. Even if I say no. It’s nice to know the offer is there.
Emailing me resources that you have heard are good. I can’t guarantee I will make them my personal homepage, but I like to have resources on hand.
Supporting us with fundraising efforts toward a cure, participation in Juvenile Diabetes events, or simply educating yourself more about Keatons’ disease.
The fact that you are reading this, and trying to better understand what Keaton is going through. That’s the most important thing you can do for our family.
What Doesn’t Help
Horror stories of other people you know who have diabetes.
Telling me about every person you meet who it turns out has diabetes. I know there are other people out there. I don’t need the medical details of your grocery store checker.
Miracle cures, bizarre alternative therapies, or medical advice of any kind, really. You are not pediatric endocrinologist or a diabetes educator. We are not holistic medicine kind of people. So I am not going to take your advice, no matter how authoritative your source. So for your sake and mine, don’t waste your breath. That may sound harsh, but you haven’t heard all the ridiculous, repetitive, or just plain wrong advice we have heard in the last month. No matter what you have heard, you do not know what is best for Keaton. Don’t get insulted if I have to tell you that.
Talking about “good” or “bad” numbers with Keaton. His blood sugar is high, normal, or low. Not good or bad. We don’t ever want him to feel like he is to blame for his body’s response to food, activity, or insulin.
Joking about diabetes with Keaton. He is very sensitive to the idea that people may laugh at him for having diabetes, having to check his blood sugar, or getting so many shots. Please make an effort to avoid making him ever feel you think anything about diabetes is funny. Eventually he may get to a place where he can try to find some humor in his horror, but we are not there yet.
Telling us how lucky we are that what he has is not fatal, is easily treatable, or will get better. No, he doesn’t have cancer or heart failure. But what he has is a dangerous, scary, painful, stressful, life-long disease. It doesn’t help us for you to minimize what he and our family are going through. And for heaven’s sake, it does not make me feel better to hear about someone else’s kid who is dying from something “worse” than diabetes. That would make me a rather sick individual, in fact.
Now What?
Now, we wait and see. Wait and see how his body responds to his insulin. Wait and see how he responds to what is happening in his body. Wait and see how other respond to his new struggles. And wait and see what new drugs and technologies will come out that will make his struggle easier...or just a memory. If you want more information, visit http://www.jdrf.org/, http://www.ada.org/, or http://www.childrenwithdiabetes.org/. Or just ask. We're quickly becoming diabetes experts.
Now, we wait and see. Wait and see how his body responds to his insulin. Wait and see how he responds to what is happening in his body. Wait and see how other respond to his new struggles. And wait and see what new drugs and technologies will come out that will make his struggle easier...or just a memory. If you want more information, visit http://www.jdrf.org/, http://www.ada.org/, or http://www.childrenwithdiabetes.org/. Or just ask. We're quickly becoming diabetes experts.
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