~3forme~

Thanks to all of you who have read Nora’s story (check it out if you haven't. It’s really touching to me that so many of you care. Forgive me, but I feel like I should share a little more. I read through it again today and realized it was long on emotion and short on facts, so I’m coming back to give you a few more details about type one (juvenile) diabetes. If I’m going to share, I should make sure you have all the facts! I know some of our friends with autistic children will relate when I say that after you’ve spent several years devoting your time to learning as much as you can about something that affects your child’s health and well-being, it sometimes gets hard to decide how much to share and when.

Here’s what you should know. I know I didn’t understand any of this until we went to the hospital, and there are so many misconceptions out there.

Type one diabetes is an autoimmune disorder. It involves a genetic component—certain people have a genetic risk factor that makes them more likely to develop diabetes—and some sort of trigger. We’d never had a diabetic in the family before, but obviously Nora got the risk factor anyway. It’s possible to have the risk factor but never develop diabetes. The triggers are still being studied, and could be anything from viruses, environmental factors, early introduction to cow’s milk, or many other unknowns. They may be different triggers for different kids. When the “right” trigger hits a kid with the genetic risk factor, the immune system goes wacko and starts destroying the body’s own insulin-producing cells. Eventually, enough die out that the body can’t keep up.

Insulin is necessary. It acts as a key to unlock cells and allow them to use glucose for energy. Without insulin, the glucose floats around in the blood stream, but the cells starve because they can’t access the sugar. Glucose “spills” out through urine, and the body dehydrates and starts burning fat for energy, producing ketones, which are very dangerous for diabetics and can cause organ damage and other horrible complications. Many type one diabetics lose weight before diagnosis because their bodies have been burning their fat to survive. A type one diabetic without insulin will go into ketoacidosis, a diabetic coma, and die. It’s impossible for a type one diabetic to survive without insulin. It’s a pretty quick process from when the child starts showing symptoms to when he/she becomes dangerously ill. The cell loss occurs over a period of months, but symptoms don’t start showing until enough cells have died that the body can’t keep up anymore. Once a child starts insulin, there is a “honeymoon” period for up to a year or so, where they are still producing some insulin, but not enough. Eventually the cells are all gone.

Type two (once called adult-onset) diabetes is different. Type two diabetics either don’t produce enough insulin for their bodies’ needs or they are insulin-resistant so it doesn’t work as well as it should. They may have their diabetes controlled by diet and/or exercise, oral medications, or insulin.

Type one diabetics can get insulin through shots or an insulin pump. They need insulin for basic body needs all the time. On the pump this is called basal insulin, a constant drip 24 hours a day, at a rate which can be changed based on what the body needs. On shots, this is a long-acting insulin which is slowly released over time. They also need bursts of insulin with meals, called bolus insulin on the pump. With shots, it’s a shot of fast-acting insulin through syringe or injection pen at meals. There is now an inhaled insulin available, but it’s only the fast-acting, so a type one diabetic would still need to have shots for the long-acting insulin. Also, its effectiveness in kids is still being studied, and it’s a much less precise delivery method.

It’s essential to count all the carbohydrates in food that is eaten, and use the correct amount of insulin for that amount of carbohydrates. Any food containing carbs will be broken down into glucose as the body processes it. A piece of bread or a glass of juice, either will be sugar in the bloodstream. Some foods break down quickly and others slowly, so we learn how to tweak the insulin in various ways based on what is eaten to make it work most effectively.

Blood sugar can be affected by activity levels, hormonal changes, puberty, menstrual cycles, weather changes, time of day, type of food eaten, etc. It’s not like an equation where you put a certain amount of insulin in and you get the same result each time. You learn a lot over time based on experience, but there are always surprises and unexplained things that happen. It’s kind of like juggling, keeping all the factors in balance. Low blood sugar can cause symptoms like confusion, paleness, dizziness, shakiness, hunger, mood changes, etc. and will result in a seizure if too low (luckily we’ve never experienced this). High blood sugar results in belly pain, nausea, headaches, lethargy, etc., and different people may have different symptoms. High blood sugar causes the eventual complications that we want to prevent. The closer you can keep the blood sugar to normal, the better your long-term health. That’s not easy to do, though, and every type one diabetic experiences highs and lows on a regular basis. High blood sugar requires extra insulin to correct, low blood sugar requires extra fast-acting carbohydrates.

Nora’s pump is about the size of a pager. It is attached at her belly, bottom, or legs (anywhere with enough fat to pinch a bit). We have to change the site every three days or sooner if it comes loose, gets infected, or there’s some problem. It’s a thin flexible tube called a canula, which is inserted under the skin. The insertion set is a needle with the tube around it. The needle goes into the skin, then is pulled back out so only the tube remains. We have numbing cream (lidocaine), which we put on a half hour before so that it’s not as uncomfortable. It still hurts a bit, but not badly. The pump has a cartridge inside, which is filled with insulin. We refill the cartridge and change the tubing every six days. The pump delivers insulin 24 hours a day at varying rates. About once a month or so, we change the programming to make it deliver more or less at various times based on the patterns of her numbers. I used to have to call the phone nurse or email the doctor and have them make the changes, but now I do it on my own. Every time she eats, we enter her blood sugar number and the number of grams of carbohydrates, and it delivers an appropriate bolus.

Now I feel like you know more of the facts! Hope this helps explain it for those of you who are unfamiliar. Thanks for listening and being so supportive!