Thursday, February 9, 2012

A Child with Type 1 Diabetes Part One- Mornings

My daughter Macy is a Type 1 Diabetic. She was diagnosed at age 7 and she is now 16 years old. I have met many Type 1 adults in the last few years and it turns out the challenges my child has dealt with are exactly the same as these adults have. In ways that helps us feel better, but in other ways it is depressing as well.

A child with Type 1 Diabetes (and adults) must inject Insulin into their bodies by way of shots or an Insulin pump. There is no miracle diet or lifestyle changes that will make their Type 1 Diabetes 'heal' or go away. Anyone who says otherwise is a con-artist looking to make a buck off of another's suffering.

Type 2 Diabetes is a lifestyle and/or health issue that is due to other factors that slow down the manufacturing of insulin their Pancreas creates. Type 2 Diabetics still produce Insulin in their bodies. Just not enough to handle their glucose intake. There are oral medications and lifestyle changes that can improve their conditions. Some Type 2 Diabetics get so bad that they do have to inject Insulin into their bodies as well. They must limit glucose intake and manage their diets and activity levels to help their bodies keep up.

Parents of Type 1 Diabetic children go through a daily hell. We are strong and survive what needs to be done. But we don't get a break, ever. We must manage our child's medication, activity levels, food intake, and interactions.

Our children must interact with so many people, a large number of those people are ignorant about the difference between Type 1 and Type 2 Diabetes. These people for whatever reason feel the desire to educate our children on what they are doing wrong. And in some cases actually bringing false hopes to a child. I classify this as a crime. There is nothing more heartbreaking than a child who must endure daily pain and is made to believe if they just did such and such it would all go away.

A normal morning for a Type 1 Diabetic child begins with waking up. Waking up is something everyone does, but what everyone doesn't do is battle with low blood sugars which make waking up difficult. In some cases a child doesn't wake up at all. Yes this sounds dramatic, but unfortunately many children (and adults) lose the battle with Type 1 Diabetes in their sleep. (This is referred to as Dead in Bed Syndrome.)

So my daughter wakes up and tests her blood glucose. This means a finger prick to get a drop of blood onto a test strip. If you have ever accidentally poked yourself hard enough to get a drop of blood you can understand how much this hurts. Based on what her blood glucose level is determines what she will do next. If her blood glucose is low, eating is first (even before a morning trip to the bathroom).

As parents of Type 1 Diabetics we have to try to make the healthiest choices available and encourage healthy choices. In this situation we must get our child to drink (if possible) a quick acting sugar, like orange juice or even soda. (Type 1 Diabetics may eat sugar. A very common misunderstanding people have about the difference between Type 1 and Type 2 Diabetics. Often times you will see a Type 1 child sitting over a bowl of candy. Although it's not as fun to eat when you have to.) The sugary drink doesn't always work because one of the side affects for many with a low blood glucose is being cranky. Getting our child's blood glucose up is the goal, we will make healthy choices later.

If our child is uncooperative or worse unresponsive a tube of glucose gel (or cake gel frosting since it is basically the same thing and often tastes better) is squirted slowly between their cheek and gums. The glucose (sugar) absorbs very quickly into the tissue of their mouth which will raise their blood glucose to a level that hopefully make them be more agreeable and easier to help. We try to follow the sugary drink with a snack that consists of carbohydrates, protein, and fiber. And then they must test again to make sure it has leveled out.

There are situations when Glucagon is needed. Glucagon is a hormone delivered in a shot. This hormone rapidly rises the blood glucose. Our Endocrinologist prefers to not consider it's use unless it is life or death. Very similar to an Epi-Pen it is very hard on your body and causes highs and lows to rebound all over the place for days. We have been lucky enough to not have needed to use one. We have had an ambulance come to help my daughter when she was 8 years old at daycare, but they used glucose gel and were able to help her that way.

Back to our morning. So she tests. Then after addressing whatever her blood sugar is we move on to getting dressed, packing for school, brushing her hair and teeth, and eating a normal breakfast. After eating a normal breakfast she then must figure out how many carbohydrates she ate and bolus (give herself insulin) for those carbohydrates combined with any adjustments needed based on what her blood glucose was when she tested.

Getting dressed for our daughter who uses an Insulin pump means that her clothing choices must be comfortable to her. My daughter prefers low rise jeans because her pump site is primarily on her tummy. Any waist band that rubs or even comes into contact with her pump insert is a no go. She also must have the right kind of pockets and/or belt loops to attach her pump to.

Then she packs for school. In her purse she has rapid acting glucose snacks in case of a low later in the day, her test kit (which includes test strips, lancets, alcohol swabs, the lancing device, and the actual monitor), her cell phone with a full charge (in case she needs to call home or for help), and then her other normal teen necessities. Then she must do a pump check. She must make sure she has enough Insulin for the day and enough battery life for the day. She must also pack what she will be eating for lunch. (This is one of our biggest argument areas as mother and teen daughter. My daughter would prefer to skip lunch altogether. But that's for another day) Anyway, that's a lot of things to check for and we have had many mornings that the chaos got the better of us and I got a phone call later to bring her whatever she needed and her school is 30 minutes away.

Every 2 to 3 days she must also change her pump insert and insulin reservoir. This requires filling up the reservoir with insulin (and no bubbles) and inserting a catheter like piece of plastic into her tummy. Of course there is a needle to get it in there. Sometimes it is just uncomfortable and other times it hurts like hell. When you have a good insert in you don't have problems with the tubing (similar to an IV. If you have ever had one of those I am sure you have had nurses dealing with alarms for the fluid not moving through the tubing, that happens too) or a problem with the site. Sometimes the insulin just won't flow or worse goes under the skin but not in the tissue. When these things happen you have to change the site again.

Then she leaves for the bus stop. My heart always jumps and I worry whether she has checked it all, even though I always ask. Sometimes I even send her text messages to make sure. She goes to school.

I decided to split this up into a multi post because detailing her whole day can get a bit monotonous in reading. This is just our morning ritual. There are so many things we have to worry about and be prepared for. If you have a child with Type 1 Diabetes I am sure your morning is similar. If you have a different special needs child then I am sure you go through many steps that the normal child doesn't have to deal with also.

Parents of Type 1 Diabetic children hope and pray for a cure soon. Insulin is not a cure, only life support.


  1. So much to have to go through. The poor kids who have to go through this, must grow up so quickly. It sounds like a lot of responsibility. Prayers for you both.

  2. I feel sad to read this post. Keep on updating.

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