I signed up to run the Race to End Diabetes because I wanted a personal challenge, but I also feel that it is important to find a cure.  My grandfather had diabetes, but he passed away when I was young, so the impact of diabetes on his life wasn’t apparent to me.  I want people to know how T1D affects a child and their family. 

Hello, my name is Erica, and I blog at bassgiraffe’s Thoughts. Our 4 year old daughter was diagnosed with type 1 diabetes one year ago. Since then our lives, and most importantly, her life has changed dramatically. Before we tell you what a typical day of our diabetic family I want to give you some important facts about type 1 diabetes.

What is Type 1 Diabetes (T1D)?

Type 1 Diabetes (T1D) also known as juvenile diabetes is when a person’s pancreas stops producing insulin. It’s not caused by what someone ate or an unhealthy life style. It can be hereditary, caused by a virus or can just happen. In our case we think it was a virus she had the summer before she was diagnosed. Once the pancreas stops working it will never work again. In order for someone with T1D to stay alive they need to inject insulin into their body. They also have to keep a close watch on the blood sugar (blood glucose or BG) levels and count the amount of carbohydrates they eat during the day.

What happens if BG levels are too low?

If a T1D’s BG levels go below a certain number their body starts to shut down. If they don’t get a fast acting sugar (carbohydrate) into their system they will go in to a coma and could die if the low blood sugar isn’t caught soon enough. If someone cannot wake up to take a fast acting sugar you may have to inject glucagon into them, they will then need to stay in the hospital for observation. For this reason it is extremely important for a T1D to check their BG often. For our daughter, we check her any where from 6-12 times a day — poking her finger to get a drop of blood, 6- 12 times a day and have it read on a glucose meter.

What happens if BG levels are too high?

If a T1D’s BG levels go above a certain number and goes untreated for a certain amount of time their body will develop what is know a keytones, and could go into Ketoacidosis (DKA). If you don’t seek help soon enough your body will start to shut down, you could go into a coma or even die. Signs of high keytones are frequent urination, extreme thirst, unable to stay awake, pain in the stomach. To get rid of the keytones, you need to administer insulin, and sometimes you may need to stay in the hospital until your blood sugars are in control. To keep our daughters BG levels at a safe range, we have to give her insulin injections 4 times a day, usually in her arm or leg.

What goes on in the life of a kid that lives with T1D?

For us, it’s not always a cut and dry routine, nothing is “typical” when it comes to someone with T1D. Its a constantly changing thing. Something might work for awhile then things change and you have to figure out how to get her BG numbers back on track again.

Our day starts out by getting up just like any normal family, but because managing the disease is all about routine and schedule, weekends often mean not sleeping in as long as we used to in order to make sure everything stays on track.

Once dressed, we go downstairs, and test her blood glucose (BG) levels before she eats. If she is low, she gets a juice box immediately, otherwise we need to figure out what she wants to eat for breakfast, and measure exactly what she is eating so we know how many carbohydrates she will eat. Sometimes she will eat everything we measured out. That make it easy for us to then calculate how much insulin she gets for her food plus any added/subtracted amount, depending on how her BG was before the meal. If she doesn’t eat everything we then have to figure out how many carbs to remove before doing our calculations. We then put a needle tip on her insulin pen, set it to the calculated amount and administer the insulin in her arm or leg. This usually is accompanied with crying or screaming (the screaming has become less the longer she has been doing it).

If it’s a school day my husband, Chris, often will make the lunches in the morning before they leave. Lunches aren’t as simple as making lunch for our oldest child. It takes a bit longer to prepare. Her school has two nutrition breaks, one midway through the morning and one in the afternoon. So she needs to take two lunches with her. Both lunches need to meet a carb count goal (set by her medical team) to make sure her BG levels are maintained through the day as well making sure she has proper nutrition. We write down exactly what carbs are in each part of her lunch, this is for the nurse to be able to calculate the proper insulin and if she doesn’t eat all the food, he can subtract the carbs from the final number. Chris also prepares her diabetes kit, making sure all her diabetic supplies (insulin, needle tips, test strips etc) are all ready for the day.

That is all done in the morning. Once that is all done, we are ready to head out the door to go to school.

Care at school

Before each nutrition break she has her BG levels tested, then she can eat. Once she is finished with her first nutrition break, her nurse will communicate with us her BG levels and confirm how much insulin he is giving her. For her second break he only tests her BG levels and sends another message to us.

Routine is important ~ even in the middle of the night

When she gets home, she gets to play or do homework for a bit while we prepare dinner. We have to try to make sure she is eating close to every 2-3 hours to help keep her BG levels as even as possible. We test BG levels again before dinner. We then measure out how many carbs are in what we put on her plate. In the past she would fight us on eating and wouldn’t eat everything put in front of her, if she doesn’t eat everything we then have to remeasure her food to find out how much she didn’t eat, so we are sure to give her the correct insulin. After another arm poke with her insulin, she usually goes back to playing or to reading with her sister.

Before bedtime, we check her BG again and then she has a snack to make sure she has enough carbs to last her body through the night. She then gets her fourth and final insulin shot of the day, this time it’s a long acting insulin that works in the background for 24 hours. (There are two types of insulin she receives. A fast acting one that only lasts around 4 hours, she gets that one 3 times a day. And then there is the long acting insulin that lasts for 24 hours.) She then goes to bed.

We then either stay up til midnight, or if we go to bed at a ‘normal’ time, we set an alarm to check her BG levels in the middle of the night (she sleeps through this testing). The midnight checking is extremely important, we can’t see her and she can’t communicate with us with how she is feeling. There have been many nights her BG levels were low. We then have to give her a fast acting carb, like a box of apple juice. We then recheck her 15-20 minutes later, if it still hasn’t gone up we repeat the process. It makes for long, tiring and stressful nights when that happens (and for me I won’t be able to sleep, because I’m worry that her levels will go low and she won’t wake up in the morning). We are also blessed that our daughter has become a pro at “sleep-drinking” so we just have to sit her up, and put the straw to her mouth and she can finish the box in less then a minute, then rolls over and goes back to sleep. It wasn’t always this simple and we would have to fight with her to wake up and drink the juice. We are also very thankful that she has never been so low that she hasn’t been able to wake up at all either!

Keeping us on our toes

Every day is a bit different. It all depends on our schedules, what she eats, her BG levels, her level of activity and so much more… and weekends present their own challenges, nothing has a set schedule. We hope this helps you get an idea of everything that we need to deal with helping a young child with type 1 diabetes.

Thank you Wendy for helping spread the word about T1D and for doing the Ford Canada Race to End Diabetes run. It means a lot to our family and many others in Canada. Our hope is to one day find a cure and our little girl won’t have to live through so many pokes and fears, that she can live a “normal” childhood.

At only 4-years-old, she has spent a year of her life getting poked and pricked. Until there is a cure, this will be the rest of her life. As she grows, she will start to understand how to care for herself, but until then, her parents will repeat this routine every day.

Thank you Erica for sharing your story! 

Please support me as I Race to End Diabetes to help Erica, her daughter and many other Canadians who lives with this disease.