I don't even know where to begin......
Our son was dx'd with T1 7 years ago, just after his 2nd birthday. He is still MDI, as his endo has been happy with his A1c so there has been no need to change. He started sneaking food quite awhile ago and we had multiple talks with him about just letting us know when he wants something so we can give him the insulin. We do the "free" snack option as well. The sneaking didn't stop. Then we discovered that he was lying to us about his numbers on his meter when he tested, as we took his word for the number he would tell us, not thinking we had to look at the meter every time. His numbers were actually quite high (because he had snuck something) but would tell us a number in range. The latest discovery makes me absolutely sick to my stomach and scared! He dropped fast on us yesterday while at a baseball game. I grabbed my energy drink (I know bad choice, but it was the closest thing) as he was extremely close to passing out. After a few minutes we tested him and he was 55! He then had a burger and fries and we decided to correct later and just let him come up, so after a couple hours he checked his blood sugar. 65!!!! What? How?! When we got home, we checked his bedroom and what do you know.....empty wrappers every where and his "missing" insulin pen and needles!!!! :( He is sneaking food and giving himself insulin! I'm getting sick again just writing this. We will be seeking professional help for him. We know he is only 9, but he does not seem to care/comprehend how serious this is. I'm sorry if this is hard to follow, I am such a range of emotions right now. I have no one else to talk to about this.....Thanks for listening.
I don't even know where to begin......
This parent is going through a similar thing. Link to thread Makes me glad that I am the Type 1 and not my child. Best of luck to you.
Many T1 children go through similar things. I know I did. I think the link may provide you some good ideas and support. I would also like to say that a 9 year old that is eating and dosing for it is pretty darn good. While you probably need some oversight, I think he is ahead of the curve and that is exceptional.
But he is eating and dosing without out permission/supervision. Thus the extreme lows :(
Please don't take this the wrong way, but I think you are overreacting. It sounds like your son wants a little independence. This is a good thing. We all make mistakes dosing insulin. That's how you learn. He's a growing boy. Probably hungry all the time. I think you should just tell him that he doesn't need to hide his snacking.
OK, that would be great if he knew what he was doing. But if he decides to sneak food and give himself insulin and give himself too much, that could be fatal! Like yesterday. I honestly don't think I am over reacting. We have told him multiple times there is no need to sneak food and that we just need to know so he can get the correct amount of insulin.
Has he been taught how to count carbohydrates and dose insulin, even just the basics? It sounds to me like he wants to take some control. I know when I was diagnosed as a kid I was taught nothing, my parents were taught everything and I think they and everyone else just assumed I would absorb things from experience. When I was a teenager and started to take control, I had no real idea of what I was doing and basically had to learn everything from scratch myself.
I also agree with others that I don't think sneaking food is unusual at all. I used to do it all the time as a kid (and didn't bolus as this was before MDI days). A few years ago I had a pump appointment with a CDE at our local hospital who said it's not unusual for her to download kids/teenagers pump records and see an entire week with only a few boluses! In this situation perhaps it's best to take his insulin pens so that he doesn't have access to it. Eating food without bolusing is safer than eating food and bolusing with a completely random amount of insulin, in this case.
You may want to stop by the Children with Diabetes site to talk with others who have been through these types of situations. I am SURE you are not the only one!
I know that must be pretty scarey. Did he admit to giving himself the insulin?The sneaking part is normal, my 9 year old I found a ton of candy wrappers under all of the furniture in her room (her sister is 11 and in the same room so I don't know who is eating the candy or if it is both of them I don't get a straight answer) Probably explains why she is high at night lately. I don't deprive my daughter of any food, I just correct for it as she likes to snack constantly. Have you thought about an insulin pump? We are on the pump so as my daughter snacks she will ask me the carb amount and she puts it in the pump herself. I guess first a good idea to have someone talk to him and then maybe consider a pump if he likes to snack all the time. He may want some control over what he is doing so its probably a great idea.
Thank you so much for your perspective! We have been working on teaching carb count and ratio. He has a really hard time with math :( But I think we need to step it up, what you said makes a lot of sense! I know the sneaking part is not unusual but the dosing himself is what scares the sh*t out of us, especially seeing as he does not know how much he would need.
For now, I would probably take his insulin pens away so that he does not have access to them. Eating without bolusing is safer than eating and bolusing for a completely random amount. But I agree, I would step up the carbohydrate counting. If he has a cell phone, perhaps get one of those "bolus calculator" apps where you can plug in the amount of carbohydrates and have it suggest an amount of insulin based on his I:C ratio. Or, make yourselves (as parents) available via text so he can text you the number of carbohydrates he wants to eat and you can text back the insulin dose he needs to give.
Seeing as right now he can not handle his diabetes on his own, we will stay with MDI, but once he can prove to us that he can be trusted and understands diabetes and the treatment we will probably move to a pump.
Sounds like a plan
It might not be a bad idea to give him a primer on carb counting.
When I was your son's age, the standard of care was much lower than what it is, currently. I was taking large doses of unstable insulins. I was unconscious, in shock every few months, mostly in my sleep. Sometimes I would wake up in the hospital. This is just to give some perspective. Kids do stupid stuff. Especially boys. There is plenty of stuff I did that I hate to think my son may do some day.
I completely sympathize with your position. Asking for the opinions of other PWD is a good idea. I urge you take a deap breath, think about it, and take a measured approach. Things will be fine. Good luck.
Thank you! ;)
Could you have your son determine what doses he think is appropriate and then get your OK. He may feel independence and in control while allowing you to have the neccessary oversight?
Thank you everyone for your input. I think that is the direction we will head in....working on him understanding carb count and dosing.
I know a lot of people feel that you have to master MDI before moving to a pump, but I have another perspective to offer. I think pumping might be worthwhile in this situation because it would allow him to have more independence and freedom while still giving you some control.
If he isn’t good at math- it’s really helpful to have the pump to plug your numbers in and have it help you do the math. While he would need supervision at first, once he mastered the task it would allow him to make better choices.
At the same time- I know with an animas ping you as the parent can download all the information from the pump in order to know exactly what he did and when. If he were to give himself insulin with his pen needles, you might not know what he gave. With the pump- you can see every dose, alarm, decreased basal etc etc. plus you can give him insulin using the pump remote which is very helpful.
Also, cgm might be an option because it would alarm when his sugar is out of range alerting both you and him?
I can’t imagine what it would be like to be you or your child. But I have watched a lot of children grow up and rebel against diabetes in my work as a paramedic. I have found that allowing independence earlier when they can fall and you can pick them up is MUCH better than waiting and then having them take off on their own.
Maybe start small- teach him carb counting and get him excited about getting a pump? That way he’s involved and prepared and you both can feel better?
I was diagnosed as type one at age 26 so I don’t have any first-hand knowledge about being a kid with diabetes or raising one. However, the family that lives next door to me has two diabetic children both diagnosed at she three. Those kids are in their late teens now and managing their own diabetes. I know that the parents managed things for them (and with them) until just a few years ago. I think 9 years old is too you for someone with diabetes to be doing any decision making when it comes to dosing or even having access to insulin with out close supervision. I wouldn’t trust them doing their own glucose readings either. I would want it all done in front of me so I could see all of it.
I am both terrified and impressed by this.
It is all kinds of scary to have him dosing himself for snacks because you don't have the assurance of accuracy and safety.
But, he's wanting to take this on and that's huge. Self-efficacy and independence in managing one's own health is something that people twice his age could use more of.
Is there any way you could work with him to help him learn how to dose himself accurately?
And then probably establish some bedtime rules because... Yeah, that's a scary thought. :o/
Best of luck to both of you!