My sixteen year old daughter was diagnosed with type 1 at the age of 2 years old. SHe does not remember not having diabetes. SHe is in a place of denial with her diabetes now, and often does not dose insulin or check her blood sugar levels. Dosing is not complicated as she is on an OMNIpod pump. Her last A1C was over 12. Has anyone had a similar experience with a teen, and if so how did you handle it?? Any input for another frustrated type 1 parent out there??
Kathy,
If your daughter will not accept help from you or another adult who is close to her, then you will need to find outside help. Maybe start with the pump educator for her Omnipod as a source and go from there? If a 16 year old on a (government) funded pump in Ontario has an A1C over 10 and is not showing any effort to get their A1C under 10, then they would lose all eligibility for a pump and pump supplies, and in losing government funding, any private funding that family paid insurance covers would likely also be lost. So needless to say, in Ontario, if our kids are going to use a pump, we as parents have to make sure they use it well or plan to pay out of pocket 100% of the daily cost.
16… and a girl… can mean lots of things. Don’t want help. Just want to ignore diabetes. Tired of D interfering with my life. Don’t want the responsibility of diabetes… or following a trend of teens, she might be using high BG’s to lose weight. An, I don’t care attitude, with an A1C of 12 can mean any number of things, none of which are any good for your daughter. If she won’t accept your help, seek outside help and don’t wait or put off doing it!
Cheryl
My son is almost 15 and like your daughter, I don’t think he has a memory of life before D (he was 5). So far, he’s doing okay with his diabetes in high school. He’s only forgotten to bolus a couple times this year. He does pretty good on testing and managing himself when he’s out with friends. His A1C’s are in the low 7s so I can’t complain. (it might be a bit higher I fear at next visit in 2 weeks - he’s gone through a lot of growth spurts and it took us time to get his new basals/boluses figured out)
But despite this, he could be doing better. I always have to remind him to test at home. He’s finally starting to keep track of his site changes, but he still seems to forget a lot.
When I talked to a doctor about it once, he suggested figuring out a performance/reward system. He said it is very common for teens who have had great A1Cs to start getting terrible ones, so he said some parents start by setting up a “contract” - realistic expectations and goals, with rewards and privileges tied to them. (If your daughter drives, I’d start with that one - my son is not there yet, but that is at the top of the list for us when the time comes) While we all want great A1Cs for our kids, I think it’s important to focus more on the process first. It’s hard for teens - bodies changing, crazy hormones, so be realistic with the A1C (certainly under 8 is a realistic expectation). Yeah, more than likely your daughter ain’t going to be happy, but I find the few times that I threatened loss of privileges to my son, he started doing better.
I’ve done some reading on the teen brain and one thing they don’t do well with is understanding consequences of “dangerous behavior” - driving fast, drinking, and in the case of kids with D–long term health issues tied with poor diabetes management. So sadly, preaching to them about long term health consequences probably won’t do them much good.
Good luck. I’m not yet in your shoes, but I know it could happen to us too.
Hello Kathy
Nice to meet you. My name is Jennifer and I have type one diabetes and both my kids have it too. My daughter is 14 and my son is 11 they both got it at seven. She will stop eventually. It took me a long time. My kids are in denial too. I have had diabetes for 33 yrs now I got it at 3. It wasn’t until I had my kids that i really started to look after my self. Diabetic camp really helps my kids learn to cope better and it gives me a break to look after my self better. I had to tell my son if he does not give his needles on time that he would have to go on needles every time he eats. It works for about a week. I use what ever it takes. He will not tell anyone when he is low. There are so many htings that they do. iI mean don;t do lol. They make me a nervous wreck sometimes. I will finish writing this tomorrow i am having a low blood sugar right now.
There are some good tips here in this discussion about sneaking food.
As a former T1 teen myself, I can tell you that often the counseling needs to come from someone who isn’t Mom or Dad. Teens are often using rebelling against their diabetes as a form of gaining a little control in their lives. And if Mom or Dad are on the side of diabetes, they are in some way siding with the enemy, if that makes sense. Another trusted adult might be helpful in this case.
What you should also know is that, even teens who do everything they’re “supposed to” - like myself or a 15-year-old I currently teach - can have A1c’s that high. So be careful also to acknowledge her efforts and work on figuring out together how “you guys” can bring her A1c where “she” wants it. My A1c from age 10-20 was well over 10, peaking at 15.4 at age 13. And I was well-behaved about my D. The most disheartening and frustrating thing about my diabetes when I was a teen and college student was that my endocrinologist did not believe how hard I was trying and just assumed I was non-compliant because my numbers were bad.
Hi All. New here. Nice to meet you all. I’m roughly in the same boat. My step son was diagnosed 5 years ago and is 10 now. He has lately been depressed and mad that he has this disease. No matter what we say or who we show him…like stars with type 1…he just doesn’t like it. We made an appt with someone for him to talk to at the clinic without his Dad or Mom or Me. Maybe over time they can do something we cant.
@Lesley: Welcome to the Forum! I have gotten lots of support and help here, as I am sure you will.
Just some questions running through my head as I read your response:
Does he have any interactions with any other children with type 1? Does he go to any D camps? Is there a support group for type 1 diabetic children in your area? I think that having him go to a counselor or psychologist is a great move, but I think that he may benefit him more if you were also able to meet up with other children roughly his age. There are also pen pals available on JDRF’s website. That way he could express himself to someone that is in the same situation as him.
Hi Ursela and thanks for the welcome! He doesn’t have interactions with others no. There’s only a couple adults I know with the pump . He has one one year to a D clinic and liked it. One year he went and wanted to come home so we picked him up. There’s no support group here either. I didn’t know about the pen pals. Im going to mention that to him. I know he expressed that at this counselor appointment he wants either of two people in there that have pumps because he doesn’t want to talk to someone who doesn’t know what hes going thru which I understand. He said " People without pumps don’t know how much it hurts sometimes when you move your site" So he wont have much to do with councilors who don’t have a pump.
Of course like I have been reading on here we always have to remind him to grab his pump…wash his hands…write down numbers…etc…its been 5 years and he does express he likes the pump better as he was on 5 shots a day. Just hurts sometimes to see what he goes thru…
Thanks so much for taking the time to let me know these things
Thank you Jennifer… do you think that her denial and refusing to take blood sugars and give insulin is a result of anger about having diabetes?? Could she be stuck in a cycle of grief?
WHat type of counselor do you recommend?? I really do not know who or where to even look for a possible person who can really understand how she feels. Thank you for your input. My daughter is actually quite defiant about caring for her D. She has days with no blood sugar checks and many days where she might only check once. And also she has days where there are no checks and no bolus’… It is a very hard thing to watch as her Grandmother had type 1 D and died very young from complications.
Well, I know that when I was a kid, my pediatric endo had both a CDE and a social worker on staff. I would imagine that your child’s doctor might know whom to suggest if they don’t already have someone who fills that function.
My son is one of the rare ones who really hates to hang other kids with d. Just saying . . . However, he does always seem more interested when he hears of adults (like parents of his friends) who have it. Strange but true. It’s perhaps because he doesn’t like to dwell upon diabetes so much like some of the kids he’s met, whereas the adults were more casual, yet supportive. So if he doesn’t click with kids at camp or whatever, don’t push it. There are some kids who do better with an adult mentor, so keep that in mind.
Hi Kathy,
The only difference I can see between your daughter and mine is their age. My daughter is 18 now, but we have been working at getting her A1c down since she was 16. It’s a tough battle every day and I feel your frustration! All I have to offer from my experience of going through this is keep loving her. I don’t have much time right now, but would love to talk more about it…hang in there!!
Im right there with you guys. My 13 year old goes through these times where he hates it all . . . I totally agree that talking to someone outside Mom and Dad is what is needed. We tried to link him up with a little bit odler peer but that didnt seem to pan out for I dont know what reason . . We could also use advice on who he can to talk to, in order to help him. We have done D camp - and they are GREAT ! ! unfortunately - we cant make it this year - timing conflict … What if your dr’s office doesnt have a CDE or social worker ?
My 15 year old (DD 2/17/2007) has been pretty defiant/indifferent/irresponsible for close to 3 years, culminating in our most recent visit where we found out her A1C was 11.9%. That was some what motivating for her but, more importantly, we have recently found a therapist in our area who specializes in medical related issues. The counselor has Type 1 and is a pumper so I’m feeling hopeful.
Camp is coming up - which was motivating all years except last year. She loves the camp but her self care didn’t improve.
It was recommended that I read ‘Sweet Kids’ to garner any info. that might be helpful.
I don’t think I have any real words of advice - just support - it’s heart breaking to go through. I waffle between sadness and fury with how to motivate her to do better. We’ve started to download her pump info. on Friday mornings and if she hasn’t done a reasonable job with checking her BG she’s not allowed to go out - I haven’t really tied a consequence to high blood sugar because that’s so arbitray and often out of their control - although she readily admits it’s primarily because she isn’t dosing when she should.
My son also doesn’t have any interested in hanging out with, talking to, attending camp, etc… with other kids who have type 1. He was diagnosed about 8 months ago so maybe he just wants to pretend he’s “normal”. I wish he would want to go to camp because he is going through a rough time this summer. Hasn’t been hanging out with his friends at all… kind of being a hermit at home… I am getting concerned that he is depressed. He suffers from anxiety too. We have been trying to get him to see a child psychologist but he fights that too. We literally had to drag him to the appointment. I am emotionally drained and exhausted by all of this…
My son is also 16 but not quite this rebellious. He refuses to carry his insulin saying he will not eat and inject in front of his friends, then does and comes home high and corrects.
He has recently gone on the Omnipod and likes it. I like the download feature and will use it more to monitor him if he gets too out of control. It shows not only the BG checks but the carbs eaten and bolus amounts. If those things are done consistently then thats all you can ask. I would not focus on the # so much - there is too much stress and hormones at this age that also affect BG.
If those things are not being done at all, then I think you have to make consequences for those actions. Having a CDE or therapist that can review reports or download those numbers with her may help. I am going to ask our Endo to change my son’s CDE at his next visit. (Although sensitive, it has to happen). She is my age and has been good to help this year but after meeting with a younger CDE while she was on vacation, I can see that Greg really took her advice to heart and di things diet wise that we had been trying to get him to do for a year. At almost 17, I need him to feel comfortable with his CDE and start taking more responsiblity before college.