I feel like a failure because this has probably been going on longer than I want to think about. My daughter is 17 and has been diagnosed since 6. I was just looking at her online pump profile since I made her plug it in so I could get info while trying to get a CGM. Well I went over the insulin usage and she is trying to live off her basal rate. She has went days with no testing, no carb bolus, no correction bolus, there are days she only corrects skips carbs that seems how she wants to control it. I thought testing was our issue. The dr and I both believed she was insulin resistant and still not good at taking her pills. But now I worry she just is wants to ignore it all. I dont think its diabulima because shes not losing weight. I dont know what to do I want to cry scream hold her all at once. Ive talked to her a 100 times about why its all important. She was in the hospital last month for 3 days. I thought a CGM would make life better and testing was our biggest issue. And it looks like I am totally wrong. How can I make her care? Shes passed the 10 year mark things like her kidneys and eyes can start to be really affected. Ready for a parental meltdown. Thanks
Sorry to say, but I went through this when I was a teenager also. It may still be diabulimia if she is doing (or not doing) this as a way to maintain her figure, even if it’s just a normal healthy weight. I had heard that intensifying insulin dosage would make me gain a few pounds, and that subliminally affected me. Foolish, I know, but I worked in the fashion industry and getting heavy was just not an option. I finally got wise and got another job, and over the next couple of years got my A1C’s under control. So that raises the question, how have her A1C’s been? Not that that tells the whole story, because lots of people have good A1C’s with erratic numbers. Could it be she is eating very low carb meals and doesn’t think she needs to bolus? She probably still does, but maybe not as much as you think. Worst case scenario, even if this goes on for a bit she may get through it OK. I’ve had Type 1 for 32 years and only now am seeing some beginnings of complications, eyes are still good but kidneys a little beat up, heart is in great shape. This is classic teenage rebellion. Has she been to a camp or T1 retreat lately? There is one in Seattle in late June if you want to look into it and it’s open to youth.
Hi @hall4sc,
So, just a basal? She may get through this OK, but find herself not in the best shape that she could be if she listened and made an attempt using some of the good advice and awesome technology to the fullest. I got along on “just basal” (NPH) for close to 25 years and only one or two blood tests each year.
True, I’m not in the best shape that I could be - let me tell her how lousy it is not being able to see well - YES, after only 10 years T1D I was diagnosed with “diabetic retinopathy”; fortunately I was introduced to an ophthalmologist who needed a Guinea Pig for his experiment with a laser beam for eye surgery. Since my first laser in 1967, I’ve needed thousands of added burns - as recently as last December - and now the doctors tell me there isn’t any more possible. Luckily my kidneys are still great, but my old heart has slowed me down - only walking 7 miles a day now but no more bicycle excursions.
I know she could do better - but like me who wouldn’t admit to anyone, myself included, that I had diabetes - and take a step back and tell herself that she is special and that she cares, she may come to realize how much she will gain with what really is vey little effort.
Hopefully for you, and for her, she is only going through a brief period of revolt.
Dear @hall4sc,
As I later thought about what I offered you as response, I realized that I didn’t answer your question.
At age 17 SHE will need to make the decisions for how she wants to live her life, if she wants to exert some effort to care for herself, and most importantly, accept herself for who she is and that T1D is an inseparable part of her living.
You can help by learning all you can [asking questions] about living with diabetes, make yourself available to her when she wants or needs your advice and assistance, and most of all letting her know that you care for her as a person and that you want the best for her.
Thank you both. We just had a heart to heart. I already know fear tactics, bribery, or anger don’t get us anywhere. She says she hates being diabetic and would like to pretend she’s not. We’ve talked and set some reasonable goals on how to improve her A1c has been highost for some time like 12-13+. She can’t get a license like that. So maybe bribery of getting dad’s car in a year if she has a license was mentioned. She wants to go to college she’ll have to drive. We’re meeting with a new educator soon who specializes in this stuff and is diabetic. I would love for her senior project to be associated with diabetes and possibly setting up a support group. There are 6 kids in her high school diabetic like her probably rebelling like her and they’ve never met. For now all I can do is encourage her and support her and maybe hover. But she’s 17 I can’t do it for her. I appreciate the responses. It’s good to know at least she can make it through this hurdle. Thank you!
hi @hall4sc,
to tag along with @Dennis and @angivan, and I would also add that I went for a very long time without testing, and without meal bolus - only long acting insulin.
imo, if she isn’t losing weight then her sugars are not continually high. If they were she’d be losing weight. my issue was in the fact that if I didn’t test or carry syringes around with me, I could pretend I didn’t have diabetes. I couldn’t pretend forever, so eventually I came around and started taking better care of myself. considering yourself a failure is your choice, but I would suggest you try not to spiral into a depression.
When It was bad for me, and as I started to change, the most helpful thing was to have a strong model of someone who was taking care of themselves. Mind you, not someone nagging me to take better care, but rather someone who was doing it for themselves because it was the right thing to do. The other thing that helps is to tear down the walls of isolation. For me, it was to be able to share my experience with someone who knew my story. Online support like the T1N is a good place because it could allow your daughter to be anonymous and to say whatever she is feeling without hurting others feelings, and without anyone judging her who knows her identity.
I know there are camps for kids with diabetes. I believe it would be therapeutic for your daughter to spend time with younger kids struggling with their diabetes, as well as those thriving despite their diabetes. Is a counselling job out of the question? it is the contact that can make it real and relevant. Judgement of the way I was taking care of myself by people who will never get what diabetes is, as well as my own powerful fears - drove me underground. it is the contact with other sharing the same issues that forces you to realize that you can’t hide anymore. once you get that part, then you realize the thing you can to to make positive change. This grace and courage cannot be taught. This can only be understood by experience. You can’t force her to take care of herself, you are not going to be around her forever so all you can do is prepare her - you can be a rock, be the best example, and be supportive and open.
please take care of yourself. good luck.
Hi @Joe That was fantastic. Thank you! I told her I would do whatever I could to make a camp happen for her this year. I think your right in all ways. We are going to see a new educator who is diabetic herself so that may help. Our endocrinologist has multiple diabetic brothers and thats why he and his dad choose the profession they did. I think it would really help to connect with others who understand in her own age group. I really hope we can find something in our community but I will also encourage her to connect online. And then maybe she can start something in our community. It would be amazing for her to feel some control and power over what is going in her body. I know for me and my own Auto Immune Disease my online support group is invaluable. Thank you for your encouraging words. I appreciate them more than i can express.
One thing I would be careful with is to be observant but don’t hover. Feeling like there is a Carb Nazi watching every bite I take makes me want to eat a whole chocolate cake.
I like the idea of her setting up a Diabetes group at here school. I think having pears around het that gets where she is coming from is important. And she won’t feel like she’s sticking out so much.
One more thing: We all experience “Diabetic Burnout” and pretend we don’t have diabetes for 's while. This isn’t a good thing by any means, but you just get tired. Tired of checking your BG’s, counting carbs, I’m putting it into your pump, or figuring out the math if you don’t have a pump. It’s not the needles that make diabetes hard, (this coming from a person who faints at the site of needles) it’s all the steps you gotta get through just to have a meal! It’s exhausting.
Very well said @JjDax, especially the “all the steps you gotta get through”.
For me, as for many others, before taking a meal or correction bolus, I need to “review” everything that I have done including exercise, meals and insulin during the previous 12 hours or day and what I’m intending to do relative to other than normal activity during the next several hours.
In other words, living with T1D isn’t just a snapshot event but a lifetime process. And to answer the next question, I DO NOT let diabetes rule my life, but rather use the condition and tools to live life to its fullest.
These comments are very helpful to me. I have a 15-year old son who wants to be independent but doesn’t want to be responsible. I know the more I hover and obsess about his carbs, testing, dosing and correcting, the worse it gets. It is so hard seeing your child doing harmful things to himself. It is like watching a loved one with alcoholism. We have tried diabetes camp but I’m not sure if it helped or not. He is so quiet and secretive. He still feels like diabetes is a weakness.
We also tried counseling, but after two sessions, the counselor told us he was not being “communicative”, that you can’t force a teenage boy to communicate, and that we were wasting our money. That we just needed to “weather the storm”. I hope she is right.
He has so much potential. I am hoping that his love for football will help keep him on the right track. Those A1Cs are so high. I don’t know how he performs at all! Anyway, thank you all, and I will keep “weathering the storm”.
My 19 year old son was diagnosed with T1D at the age of 13 months. It was rough when he was young but we got through it. Now that he is an"adult" he won’t take care of himself, won’t check his blood before meals or give himself a shot afterwards. He took himself off of the pump late last year because he was tired of it. He never used the CGM that was part of that new pump. J got him another CGM that doesn’t require a pump and he used it for a few weeks. Since January (8 months ago) he has been in the hospital with pancreatitis 5 times. Doctors believe it is due to poor diabetes management. I am VERY frustrated and worried. We have begged, pleaded, threatened, bribed and anything else we could think of to get his attention. He has ADHD and doesn’t take his meds. Hd also smokes a lot of pot. Both of these issues leads to bad diabetes management. I don’t know what to do.