I know that it’s been awhile since I’ve posted cute pictures of amazing dogs. And I am hoping to get a chance to do that this weekend. But we have a type 1 daughter that is getting older. More independent. Seeking more responsibility. Thinking she knows everything. And as a parent, letting go is already hard enough. If you have a child that has a disease like type 1 diabetes, it is even harder. And sometimes scarey as hell.
For those of you that follow along on our Facebook page, I initially posted this story last night. But I wanted to expand a little bit. There were some questions that came up. Some judgements were made. There was also a lot of agreement. I felt a little raw and exposed afterwards. So why did I post the story? Because our life isn’t just perfect numbers and gorgeous dogs. Day to day life isn’t easy. There is no formula. Sometimes things happen. Scarey things. And it is part of our story, our journey through the murky world of caring for a child with what can be a life threatening disease. And I don’t EVER want to give anyone the impression that our status quo is acceptable. We need a cure. This disease is serious. It requires constant vigilance. There is no time off. We need a cure. Here is the story. Hot on the heels of last weeks “how involved are parents” topic, when I came home from work yesterday, my wife told me that Stella was 39 with 2.45 units of IOB! That is dangerously low, and with a lot of insulin still working. We asked Stella what happened, and she said she didn’t know. I had just made an adjustment to her basal program the day before, as we were already running low after school due to PE being the last class of the day.
I was concerned that I had made a mistake when changing the settings, so I asked to see her pump. I went through the basal program and all looked fine. I asked Stella again if she knew what happened, and again, I heard “I don’t know”. Normally, if she were to sneak food, she would have an unexplained high, so I was confused. Perhaps we were having a pump issue? So I went into the history settings to look. At 1:31 there was a bolus of 1.80. At 1:32 there was a bolus of 1.55. And then another bolus of 1.55. Almost 5 units of insulin in a minute, in 3 separate bolus’! I asked again, what happened? At this point she knew she was busted. Turns out a friend at school gave her a granola bar. This was 1 hour after lunch. She didn’t check to see if she had any IOB, but knew she was high by looking at her CGM. We use an Animas Ping pump, and it has a One Touch meter that is like a remote control. We can check her BS with the meter, and then add in carbs and the meter will figure out a correction if required, deal with insulin on board, and tell us how much insulin we should be using. It basically does all the math. But we don’t send that meter to school. The school has a standard meter, and Stella also has a standard meter with her at all times. So she had no idea how much IOB she had. She did the first bolus to correct the high. The second bolus was to cover the carbs in the bar. Then she thought she made a mistake and she cancelled the bolus, so she did it again. But both went through. Scary.
We want her to be able to handle her disease. We want her to understand what she is doing. And she is learning. Constantly. And her reasoning for why she did what she did was sound. But she didn’t count on the IOB. I also don’t know how she came up with the amount of insulin for her carbs. After telling her what COULD have happened, I am hoping she was scared enough to realize what a bad idea that was. That she can’t do things like that without knowing all the info. And we will be having a discussion with her teacher tomorrow to let the kids know that they can’t sneak her food.
Now after posting that, I got many responses. Most were positive. A few were questioning and judgmental. Of course, those are the ones that stick with you. I mentioned that we would speak to her teacher about children sneaking and sharing food. Someone accused me of “parading her around like a freak show”. That hurt, and was completely uncalled for. You see, it ABSOLUTELY is dangerous. And we aren’t approaching this like “CHILDREN, YOU CAN”T SHARE FOOD WITH STELLA BECAUSE SHE IS GOING TO DIE!!!!”. It will be more like, “children, sharing food with others can be dangerous. Some children may have an allergy to certain foods, some children may have an issue with gluten, some children could be lactose intolerant, and some children may need to take medicine every time they eat”
I don’t have any issues at all with that. I don’t ever want to single my daughter out and label her. Everything we do, sometimes it feels like our whole focus, is to make her feel as normal as everyone else.
We also had someone say that we were depriving her of food. Creating food issues with her. Causing her mental issues she would have to deal with. Really? We don’t deprive her of anything, and this was certainly not an issue with her eating a granola bar. But you don’t have a clue about type 1. We let her eat anything she wants, in moderation, just like every other responsible parent does. We have cupcakes and ice cream. We go out for pizza on occasion. We eat In N Out burgers now and again. We have cookies. But it is all in moderation. And IF IT HAS CARBS IN IT, SHE NEEDS INSULIN! The PROPER amount of insulin. Not just some number she pulled out of the sky. If she is going to sneak food, it is almost preferable to not bolus than to over bolus.
We are heading into the teen years. Perhaps faster than I’d like. And there will be mistakes. We will have problems. There may be rebellion. There are going to be lots of learning opportunities. This is one. I hope she understands why this is dangerous. We didn’t sugarcoat it. She needs to know. Insulin is one of the few life saving medicines, that if given incorrectly, can kill you. This isn’t play time. We are teaching her. She is learning. There will be hurdles. And we will get over them as they pop up. I am not going to handle them all well. I will make mistakes. But so did you. And your parents. But when it comes to keeping my daughter healthy and alive, there is no compromise.
I left the comments up, all of them. If you want to go read them, they are on the Facebook page. But I would love to hear your thoughts here.
Edit: I don’t want anyone getting hung up on the fact that she didn’t have the remote meter that easily shows IOB. All that data is in her pump, and she knows how to find it. The frustrating thing that happened yesterday was that she did this bolus without even testing. Her reasoning was sound. She knew she was having carbs. She knew her BG was a little high. She bolused and corrected. But she didn’t test. And she didn’t use accurate numbers. As a matter of fact, I don’t even know how she came up with those numbers. THAT is the issue.