Part of the daily routine for someone with type 1 diabetes.
It was one week ago today that my 12-year-old daughter’s life changed forever – she was diagnosed with juvenile diabetes, also known as type 1 diabetes. More than 15,000 children per year receive this diagnosis, according to Juvenile Diabetes Research Foundation International.
Although manageable, those with type 1 diabetes are dependent upon insulin for the rest of their lives in order to survive. Living a normal, healthy life with diabetes requires drawing blood from finger tips and testing blood with a glucometer at minimum four times every day, monitoring carbohydrate intake, and at least three insulin injections per day. A constant awareness of one’s body is essential in order to recognize the symptoms of both high and low blood sugar levels. With excessive activity, illness, and stress for example, come challenges that require additional finger pricking/blood testing and the ability to adjust insulin to maintain a safe sugar level.
Sounds like a lot to ask of anyone, especially young children, but they can do it. With support from family, friends, doctors, dietitians, and diabetes experts, children learn what they need to know to control diabetes rather than allowing diabetes to control them. Although parents are very much involved, especially at the beginning of this monumental change, it’s important for children to understand they’re ultimately responsible for their health and well being.
It’s overwhelming for the entire family at first, but with support and time it becomes routine for everyone. After being home from the hospital for just three days we’re quickly adjusting to our new lifestyle. We’ve hit some bumps in the road already but nothing we couldn’t handle, and we’re preparing for future bumps we’re sure to hit so we can make it through them smoothly.
Our strength becomes evident in times of challenge, I have to say I’m extremely proud of my daughter for her bravery and positive attitude through one of the most difficult challenges a person can face - she's extremely strong and I admire her greatly.
I apologize to my readers for disappearing for the last week - along with this diagnoses came a tremendous amount of education so we could give our daughter the proper care at home. I had to focus all of my attention on becoming a diabetes expert in a matter of days. If you have stories to share regarding diabetes please leave comments, stories help others understand and learn about this disease.
Comments
Hello Valerie,
My son was diagnosed with type one diabetes when he was 7 years old, and I still remember those first weeks after we learned all about blood sugar tests and balancing insulin with his current blood sugar, meals and snacks, and activity level. A few days after we got the routine down, he turned to me and said, "Insulin works. I feel better, mommy." That really made a difference in how I looked at the changes type one diabetes brought to our lives.
We were fortunate that parents of children who were toddlers when they developed diabetes had started a parent support group years earlier ~ a couple of months after my son was diagnosed we attended a holiday party where many other children were casually having blood tests and injections, and all the pot-luck food had recipes with carb counts included; and the drinks were all made with diet soda.
Brothers and sisters as well as the kids with diabetes could get together to play games or do crafts, parents had time to chat, and it was wonderful to see so many fabulous kids with diabetes - and their families - getting on with their lives as if diabetes was the most natural thing in the world.
One of my most valued resources has been the internet parent group at childrenwithdiabetes.com, where if you have a question or concern even in the middle of the night, there are several other parents at any given time who will respond to a message with information, or just support. They have email groups for parents of teens, and I think one or two for our sons and daughters, also.
I have an article there, "Diabetes Information for Classmates," that I wrote for my son's third grade class to help them understand the symptoms of low blood sugar. All the teachers and parents thanked me for sending it in because it was written in language they could understand, so they could explain it to the other children.
Most of them were unaware that type one diabetes is so different from type two diabetes that their older relatives developed. They did not realize that type one is caused by the destruction of islet cells that produce insulin, and that is why our kids need insulin injections every day.
It had been confusing to them that a slender, athletic 7 year old could develop diabetes, and would never 'outgrow' it through weight loss and careful meal planning. My family and our friends appreciated the article I wrote for my son's classmates, too.
These days, more children and teens are aware of 'juvenile diabetes' because Nick of the Jonas Brothers band made a commitment to educate fans less than a year after he developed Type One.
Nick Jonas uses an insulin pump and checks his blood sugar ten times a day or more. My son uses the 24 hour baseline insulin Lantus (Glargine) twice a day with quick acting, short acting H humalog before meals and snacks. He also had a blood test during the night to avoid unexpected lows, especially after a high energy day.
My neighbor's grandson uses an insulin pen so he is fascinated to see my son giving himself a shot with a syringe without thinking twice about it. There is jewelry of all kinds in addition to the 'medic alert' bracelets that let emergency responders know someone has diabetes. And temporary tattoos, too!
My son carries a diabetes kit that is a 'six pack' insulated cooler with him at all times, with insulin, syringes, and blood testing supplies, as well as three cans of apple juice and a diet soda or bottle of water, breakfast bars, glucagon, handiwipes, tissues, a small medical kit.
He is allowed to carry it into movies and sports arenas, because he needs to be immediately prepared for any emergency as well as his regular diabetes routine.
Something I discovered soon after my son was diagnosed was that he put on a brave face mostly to keep me from being overwhelmed ~ he used humor as well, to ease me into the new routine. And he has always been quite a rascal, so that helped.
No matter how much effort we put in, type one diabetes is not something we can perfectly predict or control. Your daughter will make mistakes, and you will make mistakes. Either or both of you will be disappointed by A1C numbers, times when blood sugar is higher than it should be, or plummets unexpectedly. For some reason, we don't always make sense when it comes to juvenile diabetes. Be kind with one another, and remember to forgive yourselves and move on when something unpleasant happens or the scores don't match up to the effort put in to control them. Especially when numbers reflect lapses in responsibility or planning - let it go and move on, trying to do better next time.
I am guessing that you and your daughter will go through the initial ups and downs of learning to live well with diabetes, sometimes in sync but often not at all at the same time ~ but you will both come through just fine because you have so much love and trust in one another.
We are so fortunate that so many advances have been made in diabetes research and care in the past few years, and that we are so much closer to a cure.
Hang in there!
Pam W
SE of Seattle
Diabetes Information for Classmates
Bella Online / Family / Special Needs Children
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