I am in need of some advice. My 15 yr old son was diagnosed almost 4 years ago and has been in denial since. He just will not accept that this is a lifelong thing. And now his A1C is so high, it doesn’t even read on the doctor’s meter. The biggest problem we are having is that he eats and sneaks things he knows he shouldn’t have and refuses to dose for them. We just met with the doctor last Friday and she basically told him, if anything goes in the pie hole, then you need to dose. It just seems like he doesn’t care. Please help!
Hi Tracy!
That’s a tricky situation for sure. The main thing is to figure out why your son is refusing to accept his diagnosis. There are a few possible reasons… For me, one of my biggest problems is fitting in with my peers. There are times when I’m tempted to skip a dose because it feels easier than having to explain my condition to the people around me. It can make you feel isolated and different in a time when fitting in is more important than it’s ever been.
One thing that can help with this is finding your son a friend who has T1D. That might help him realize that he can still be “normal” even with this condition. Talk to his school nurse and see if there are any other students with T1. I’m also 15 so if your son wants an email pal, please feel free to reach out! My email is abigaelparrish13@gmail.com.
The other thing that might help him is counseling. Talk to his doctor and see if she can recommend someone who can help him deal with his feelings about his diagnosis. He might not like it, but it’s super important.
Hope that helps
–Abby
We did just get a referral to a counselor who herself has a TD1 daughter. So we are hopeful that this will help. I also really like your suggestion of a friend who is also a TD1. He does have others in his grade at school that he “meets up with” at lunch to do their checks and dose.
If you don’t mind me asking, how old were you when you were diagnosed? And did you experience any issues as you got older, other than the “fitting in”.
If you don’t mind, I think that I might take you up on your offer and give him your email, just to have someone he can talk with. I think talking with you and maybe finding s friend as you suggested in the area may help.
Again, thank you so much. It was nice hearing from someone his age to give me a little insight. Take care and hope to keep in touch!
Tracy, I think Abby is totally right–maybe try sending him to a T1D teen camp! I was diagnosed at 15 and (while I did dose correctly and take care of myself) it was pretty frustrating not knowing anybody else who was going through the same thing. I have always regretted not going to a T1D summer camp and have even been looking into some T1D adult camps they do in California
Another idea is to get him on a pump if he isn’t already on one. It’s much more discreet; I use the Quick Bolus feature on my t:slim all the time so that I don’t have to actually pull out my insulin pump if I don’t feel like it. It does mean more mental calculations and ensuring you’re dosing correctly for food and BG corrections, but I absolutely love that I have the flexibility to leave my pump under my clothes and just hit a button on the outer edge to dose.
Also, I think it’s worth noting that there should be a conversation around using phrases like “things he shouldn’t have.” That makes us T1Ds feel like we’re not allowed to do or eat things that other normal, healthy people do or eat. It might help him if you talk about how he really can eat whatever he wants as long as he gives himself insulin for it. Eventually, he’ll learn that unhealthy foods aren’t good for T1Ds or non-T1Ds alike and so he’ll stop eating junk/overly sugary foods. When I was diagnosed at 15, I refused to accept that I couldn’t do anything other people could do. I just made sure that if I did eat cake or junk food or play sports, I was taking care of my diabetes properly so that I could actually do those things without long-term negative health effects.
Also, he’s probably on Instagram and/or facebook… there are a ton of T1D accounts I follow, and he should too! It’s a nice way to be reminded daily that you’re not alone and other people go through the exact same things as you. One of my favorites is @type1diabetesmemes. A lot of T1D-focused accounts are funny and genuine and reflective of everyday life as a diabetic
Tracy-
So glad I was able to help!
I was diagnosed when I was 7 years old. I didn’t have too many problems because I was extremely lucky to have a group of supportive friends and a super-involved family. That said, I did have a problem last year where a few boys in my grade were saying unkind things about my “diabeetus”, etc. I talked to a teacher and the issue was quickly resolved, but it took me a while to get up the courage to talk to someone and that definitely had an impact on the amount of time/energy I was willing to devote to self-care.
In terms of blood sugar problems–I’ve had pretty good control for most of my life, but this year I’ve been having some problems with tennis practice leading to hypoglycemia. I think I’m getting a CGM soon so hopefully that’ll help! Does your son have a pump or CGM? Those can sometimes be easier because you don’t have to do a shot in front of everyone.
I would love to be email pals with your son! I had an email pal several years ago and it really helped me to feel like there was someone else who understood what I was going through. I look forward to hearing from him!
When I was that age I was the same way. I didn’t want to take care of myself. The whole routine was a pain. I suffered from severe depression during high school, and nothing seemed to help my desire to take care of myself. My mother tried taking me to clinics where people receive dialysis to try and scare me, that didn’t help. I was on a pump, but went off. It sucks at that age. I had to figure it out the hard way. I went through DKA, twice. I didn’t clean up my act until I moved out when I was 18, and became an adult. I didn’t want to feel sick anymore. I wanted to experience life without having to feel held back by my health. One of my first serious boyfriends was a big influence as well. He encouraged me to take care of myself, and i did. He’s now my husband. Some kids will get better with time and maturity. You really never know what their true influence is to not take care of there self. That was mine, hopefully you can find his.
P.S. I do agree with the others. I loved T1D camp, it was awesome. It may not be a bad idea especially if he likes the outdoors. I went to Bearskin Meadow Camp in California when I was his age. Great memories!
I’ve had T1D for nearly 60 years and I remember my teen years being the toughest. Pepsi and Sugar Smacks for breakfast, candy, cakes, liquor – you name it and I ate it. And I never took blood sugars, but did take insulin based on “how I felt”. My doctor at the time warned my parents that teen years are the hardest and I would definitely agree with that. It wasn’t till I nearly lost my vision in my early 20’s that I finally woke up and stopped being destructive. Camp is a great option, as is talking with other teens that have T1D. I know that with lots of support from my family and friends, I was able to stop my negative behavior and have been doing pretty good since then (knock wood!).
I just brought my son home from the ICU. He is acting the exact same way. I literally just wrote a post on my FB page saying the same thing a few days before he was admitted. They said if he had not received treatment when he did, he would have died!! They told him that if it happens again, he may not be so lucky next time. He had the pump, but he has gotten so irresponsible with it, that we are going back to the shots so I can monitor everything he does. I hope your son straightens up before he gets sick. It is SO HARD being a mama, when you can’t fix their boo-boos. The doctors were very frank with my son and me. They told me that I am being too nice. They said that I gotta put my foot down. We had to literally restrain him tonight to give him his shot. We went through it almost 3 years ago to the day, the exact same way. It’s like a bad dream that you return to. I don’t have any advice. All I know for my son, is that once he gets to a point of acceptance, he will have peace.
I was diagnosed as a teen myself and have also struggled with accepting the diagnosis multiple times throughout the last four years. This might not be the popular opinion, but I believe that tough love can sometimes work wonders. My parents are super caring and supportive, even when I chose to ignore the responsibilities of being type 1.
I started REALLY paying special attention to my blood sugars/insulin dosage when I did more research and read up on all of the repercussions that uncontrolled blood sugars can cause. By no means do I have my blood sugars perfectly under control, but I have definitely started to pay attention to my highs and lows more closely.
It sounds like you are doing a great job with your son, and sometimes it just takes time for us type 1 diabetics to face reality Good luck!
Hey Tracy!
It’s difficult to get through that. Your son may just be unwilling to accept because he wants to fit in, or keep his life the same. I would try talking to him. For me, when someone asks about my insulin pump, I explain about diabetes and they’re always impressed and think it’s pretty cool! Even if your son doesn’t fit in, he won’t be an outcast. If anything, he’ll be more popular.
Another thing may be depression. If he’s depressed, he may be subconsciously trying to do this to himself.
The best thing you can do, is just talk to him. Cry if you need to. It usually works for our family.
Good luck!
I hate that you are going through the same thing I am. I would not wish this on anyone. My son is 12, he was diagnosed 2 years ago and despite trying everything, he is not well controlled. His A1C is high. He also has a learning disability that plays a huge part in how he learns and understands. He also is going through puberty. My endo knows all of this and has not tried to work ok ways to help us with these issues. They ended up calling dcyf on us for neglect, so please be careful and have everything that you are doing documented. Luckily, I had been working on an amazing plan with his school and the case ended up being unfounded. But I have to go face these people in a few days until I find a new endo. I have found that showing my son photos, visuals, and reading (very brief) long term effects from unmanaged diabetes, and then having his school doing the same thing. They actually made management of bs his goal on his IEP. I wish you the best of luck. Hugs
Thank you for your insight. Hearing from other T1D’s have given me a glimpse of what he may be going through. Sometimes I just find him so confusing and complex to where I just can’t read him.
As far as the pump. We have asked his doctors and they seem to all be in agreement that he is not ready for on yet because we can’t get his numbers down and consistent. We have attended a Peak conference this year and he did get the chance to meet with some of the reps and see the pumps and how they work. He is very interested into possibly getting one, but first we have to work on the control.
That is what has lead to the advice I posted about. I am a T2D and know that we both have very different beasts that we are dealing with. And my son and I have sat down and actually had deep conversations about the differences. So many of our family meals are all surrounding a low carb diet (which my husband and daughter hate). And for the most part, we let the kids be kids and eat what they would like. The problem my son has is when he eats and sneaks things, he knows he’s doing it, but refuses to dose. We have gotten to the point that we just have stopped because all we are doing is preaching, as well as his doctors. We have all told him that if he eats something, he has to dose for it. And he just can’t seem to understand that. That’s where the problem lies.
Any advice or insight on how to help him with this would be greatly appreciated.
We are in the process of trying to find him a new therapist to help as well. His old one just seemed to concentrate on his behavioral issues, and didn’t even get close to touching the core of his issues- his denial of his condition.
Sometimes I think that it’s not so much the fitting in, as it is the just slowing down to do the checks and doses. He seems to always have other things to do instead. Ambition can be a good thing, but I just feel for him, it maybe his downfall in the end.
I am hoping that he comes around soon. We have had to put our foot down recently and are hoping that it will help.
He wants to get a part time job, as well as his driving temps. But his father and I have told him that it will not happen until he gets his sugars under control and somewhat consistent. Because his health needs to be his top priority over anything else and only he can do it.
And FYI, I know that you didn’t write a lot, but what you did helped me out so much. I always thought that his issues were because of me. So thank you!
That is my biggest fear for my son. His sugars are now finally starting to be consistently in the upper 300’s but prior to that when I first wrote this post, they were constantly in the 500-600 ranges. At his last checkup, his A1C was so high that is would not even register on the doctor’s meter. And he is always so crabby and bullies his little sister daily to the point where she is in tears and asks what she has ever done to him to deserve it.
With your son, did he have a problem of gaining weight. That is the other thing, my son is almost 6 feet tall and only weighs not even 110 pounds. He hovers between 105 and 109.
I read so many people describing their experiences and I just sit and wait. I read exactly what my son is doing and wait for my turn to have to deal with the horrible aftermath of not taking care of themselves. I saw my Mom go through uncontrolled diabetes my entire life, the almost monthly hospital stays, the lose of 2 of her toes, the leading to congestive heart failure then to her life ending kidney failure at 1 week after her 60th birthday. And I cry because I don’t want my son to have to go through that. But I just don’t know what to do anymore. I have shared through my tears what I saw my Mom go through and it just won’t sink in.
I have passed your email onto him. His name is Dalton. Hopefully he will contact you soon. I do think talking with you and just being able to connect with someone with T1D will help.
I know that’s hard to deal with. He may just be going through burnout. It happens to a lot of T1Ds who just get so tired of having to be mentally tuned in to their bodies all the time that they end up just not dosing or thinking about what they’re eating because it’s a bit of a mental break to not have to think about it constantly. You might think about getting to the root of the problem and asking him why he’s not dosing for things. Make sure he knows it’s okay to eat what he feels like eating (even if you don’t agree with his choices–which I know is hard). I remember eating zebra cakes ALL THE TIME when I was a teenager, even though I knew it was bad for my sugars. But because I felt like I had the freedom to eat whatever I wanted, I knew that it was fine because I dosed correctly and my sugar levels weren’t affected much. If you feel like he’s “sneaking” food, then it might be that he feels like it’s not okay to eat it?
Maybe try telling him that you know it sucks to have the disease and you’re really sad you can’t do anything about it. It is a huge mental strain, and even 12 years later (and with an A1C of 5.7), I still struggle with it sometimes. Maybe think about talking to him about the longterm effects (which I’m sure you’ve already done) and possibly showing him examples in the news of people who are living really long, healthy lives as T1Ds because they’re dosing correctly and then also people who have lost toes or eyesight or even their lives because they just didn’t do the simple things like take insulin when they were supposed to.
Remember that he might not be as receptive to talking about it with people who don’t actually have Type 1. Because people who don’t have it will never truly understand what we go through.
I’m not sure what your insurance is like, but my insurance covers a Dexcom CGM 100% because it’s considered preventive care. I really like it because even on days when I don’t feel like dealing with my diabetes, it forces me to. If I go high or low, I have boundaries set on my app (I just use the mobile version so I don’t have to carry around an actual receiver device) so that once my blood sugar hits either 70 or 200, then an alarm goes off. It will first vibrate, and then if I don’t look at the app to tell it that I’m aware of the situation, an annoying alarm will go off. I hate when the alarm goes off; it’s loud and obnoxious, so I generally pay more attention to where my sugar levels are because I don’t want to deal with the alarm. Maybe it would work this way for him, too? Even if he waits until he hits the high threshold he sets, the alarm will go off every 5-10 mins or so until his sugar levels start trending back down, which indicates he’s given a correction dose. This might be a great option for him!
I hope some of this helps a bit. If he’d like to talk to a Type 1 who had bad A1Cs for awhile throughout my teens, was on shots for the first 10 years of my diabetes, and who’s now successfully managing (most of the time) all that comes along with being T1D, tell him he can reach out to me. My name on Facebook is Hope Charters. My instagram/twitter/snapchat handle is @hopekyra.
With being at my wits end, having told him the stories of my mother’s uncontrolled diabetes for years and having to watch her go through it, as well as telling him about certain athletes and singers who are leading health, happy lives living with it, I just don’t know what more I can do. I am trying and may have found some in our area that is his age and a T1D for his to befriend. I have spoken to his Mom and it seems like they have some things in common. So hopefully soon we can get them together. But I think talking to other T1D’s will help as well. Especially a little older like yourself who have gone through the trials and pain and have grown from them. He is just starting to getting into and using Facebook a little bit more, so I do think that will help. I will have him look you up. His name is Dalton.
He is doing better since the hospital. He was so sick when he went into
DKA that for now, until he forgets how bad it was, he is doing more of what
he should do. He has had a few mid to high 300’s, but overall the numbers
are much better than before. I am sure that you have seen it, but I am
reading through the JDRFTeen Toolkit now, and it has helped me some. I do
know that developmentally, they are not of an age yet that they really
understand or have the ability to process delayed consequences. As they
age, they should do better, but of course as mama’s we are worried about
that being too late. His attitude is better as well. He was yelling at his
brother, friends, parents… everyone. Since his sugars have been better he
is doing better. They are dealing with so much with the hormone changes.
Hang in there. If you need to vent though, I am here! I get it!
I had an email pal several years ago and it really helped me to feel like there was someone else who understood what I was going through. I look forward to hearing from him!