Non-compliant teenage boy!

Type 1 and LADA Parents of Children with Type 1 Diabetes
1

Hi there. I am fairly new to your site. I have a 14 year old son who has been T1D for 5 years. His most recent AIC was 10.7 and he went on the 530G with Enlite CGM in January. I thought switching to the pump and CGM would get him "interested" again in managing his diabetes but I am not really seeing much difference. In fact, he lost his Enlite transmitter within 2 months and we are waiting to receive a replacement. The advice I receive from some others is that it's a teenage thing and once he gets older he will be better a managing his diabetes. I want to know if anyone has any suggestions as to getting him in line now short of bribery. I have had numerous conversations with him about complications. I've told him how fortunate he is to have these fancy tools to manage his diabetes that others a generation ago did not have. I have tried scare tactics (blindness, loss of limb, dialysis, etc.) but they just don't work. Remember when we all thought we were invincible? I hope to hear from some of you with helpful suggestions.

TIA,

Angie

2

Hi Angie!
My heart goes out to you, it must be very difficult.
I personally have no idea of what you are going through, and therefore also no recipe to fix it… If you are not a member yet of the group parents of kids with diabetes, be sure to reach out to them, they might have some nice ideas…
http://www.tudiabetes.org/group/parentsofkidswithtype1
Being a teenager myself and having grown up with D, I can only recommend you watching this video
http://www.tudiabetes.org/video/tudiabetes-live-interview-with-moira-mccarthy-author-of-raising
I pretty much agree with her points of view.
Wishing you only the best on your journey
SC

3

Thanks so much for the point to the video. I will definitely watch it and read Ms. McCarthy's book.

4

I'm really sorry I can't help you more, but there is really not much you can do but support your son as much as he allows… Usually, this time does not last forever, almost ever teen has a time of non-compliance, but they usually get over it.
I just want to point out to you, that if your son is really not taking care of himself, threatening and then eventually taking his pump away might be a solution. not that his non-compliance would stop after that, but if you are not on top of things, having a pump can be really dangerous, bc you can end up in DKA much faster than with MDI.
Of course you can try to motivate your son, taking care of yourself can be really fun! Get him in touch with other diabetics, maybe there are meetings of young T1s in your area, he is not too old for a Dcamp yet, so there he can meet some people who are dealing with the same. After all, there is still TuDiabetes, we accept members from age 13 upwards. The chat is a great place to meet PWD from all over the world.
you can show your son that growing up does not only lead to more independence, but also to more duties. Which is not only the case with diabetes, its the case overall i think.
If nothing works, I really wanna make sure that you know it is not your fault, and that you did nothing wrong at all. teenagers tend to be rebellious, and teenagers with T1 just happen to have one more point to rebel with, which is unfortunately their health.

Hugs, SC

5

As someone who has gone through burnout, there is a world of difference between “non-compliant” and the people who are labeled as non-compliant.

The tactics you are using now have not been working. Maybe try finding out why your son doesn’t feel like taking care of his diabetes. Maybe he really is trying and puberty is kicking his butt. Maybe it is depression. Maybe it’s burnout. Maybe it’s bullying. Maybe he had a really scary low and is scared of going low like that again. Maybe it’s teen pressure to fit in. My point is, you can’t even start to attck the problem until you know what it is you are dealing with.

Secondly, if your son is wearing his pump, I would highly discourage threatening to take away his pump. If he is not checking his blood sugars and you take away the pump, what are the chances that he wil given himself long acting insulin? If it’s burnout or depression, he will go into DKA much faster without the pump. At least when he is wearing his pump, he has basal insulin going. If you force him onto MDI, you will have no record of any doses and it’s extra steps for him every day and every time he eats.

6

Agree wholeheartedly with reading Moira's book. Teenagers are just awesome without T1 juggling too. The good news is I talk with so many people (now wonderful adults) who were T1 teens with similar ideas and they made it through. I think all we can do is set limits, enforce the rules and sit back and hope they choose good things (just like every other rule we set). Thankfully I learned many lessons about picking battles and enforcing rules with my non T1 daughter that will help me stay focused with him (my son is also 14). Safety always and know they can call no matter what. Otherwise we get to smile and say "told ya" when they learn the lessons on their own. Thankfully the teen years are self limiting and if we keep consistently sending the same message of keeping themselves safe, we may all make it through to the other side. For the record, I HATE EYEROLLING TEENS.

7

I didn't have diabetes as a teenager but looking back I can almost be sure that I would have rebelled against it. This is a tough one for you. Don't give up.

I really like swisschocolate's suggestion to use some kind of peer support to help your son. If he could see some healthy behavior of people his age that he likes and admires, it may help him to accept his diabetes and treat it with respect. If you could get him to attend a D-camp, it may be just the ticket. Even a group that gets together locally on a regular basis may be a help. It's been shown time and again that peer support works well for almost any age. Good luck.

By the way, if bribes worked I wouldn't put myself above that. Acting the right way for the wrong reason is much better than acting the wrong way and damaging your health.

8

Thanks for the kind words.

9

Thanks for your advice. I appreciate your point about MDI. He was not any better than either but the cost was significantly less. On MDI our insurance covered every item (insulin or test strips) for $5 each for a 90 day supply. The 80/20 for the pump and CGM supplies is a huge change for us but a sacrifice I am willing to make if it is better for him. My husband does not agree but I am winning that battle so far. Each time I have a heart to heart with my son he always says he will try to do better but it does not last. I need to read this book. I just don't understand why he just doesn't give himself a bolus when he eats or checks his blood. I am sure burnout is a factor. I know it must suck for him to have to do these things but I keep stressing that he has the tools to not be a victim of diabetes and that he can do better at controlling it. Hopefully this book will also have some ideas. Thanks again for responding.

10

Thanks for the encouragement. I have hope that this will get better as he gets older. :)

11

I always say this same thing in situations like this: (so I know I sound like a broken record, I apologize on the upfront for this response if you have read it from me a 100 times before).

First I cannot imagine the upset you are having on this issue. I have two sons, now 34 and 31 and thank goodness they are not diabetic, but I love them more than the world itself and yes I get upset over their health issues, even today. Parents are parents for life, dad's are dad's forever.

I was 17 when diagnosed and I never took good care of myself. In those days the message was very different. You will not live long and that will life will be hard. However the doctor said I want you do do these things test 6 times a day blah blah, blah.

I rebelled against it and never looked back. At 45 I woke up one day thought, hey I am supposed to be dead what happened to the plan? It was a rude awaking. Most are not so fortunate.

If I had to face a teenager in denial over diabetes as I was, I would do the one thing my parents did not try. I would enter the child in therapy. I was very angry over the diabetes nonsense. I think if I had a way to express that anger things might have been different. I didn't and 20 years later it took therapy to pull me out. I just wrote a blog about it called 'Denial: A Diabetic Issue' which can be found at:

http://www.tudiabetes.org/profiles/blogs/denial-a-diabetic-issue

I do not think it is particularly insightful for your situation but it is a description of what happens on the back end of extreme denial.

The one other tiny bit of information I can give you is something I heard from a doctor that rang so true for me. He said "when you get tired of feeling sick and tired, you will take care of yourself". He was right, unfortunately that took longer than either of us dreamed at the time but it was and is very true. I got out alive so I am not a role model to hold up. But I only got alive, because of sheer luck, no skill involved in being self destructive and surviving.

I wish you the very best. I hope things work out. Let me know if I can help in any way.

rick phillips

12

Are you helping your son at all with diabetes, or is he doing it all himself? If he does in fact do a bit better for a while after you talk with him, it sounds like he may be trying but just getting burnt out or overwhelmed with diabetes management.

I think teenagers should be managing most things themselves, but when I was a teenager my mom was definitely still helping in small ways - preparing meals (I'm sure she would have counted carbs on those meals had carb counting been the norm in the late '90s), helping with keeping logs, doing shots occasionally. Sometimes even having help with the small things makes a HUGE difference in terms of diabetes burnout. And I will say, too, that as a teenager scare tactics and nagging did not work for me, but offering to help (if I wanted it - and not pushing if I didn't) really made a difference. I did not have a huge rebellion as a teenager - the highest my A1c got was the 8% range, and this on two shots a day of R and NPH - but I definitely would not compare my teenage years to myself now at 32. It was when I was about 24 that I decided I needed to start taking real control of my diabetes and aiming for tight control.

Also, I wonder if connecting your son to communities like TypeOneNation (which seems to have more teenagers and young adults than TuD or other diabetes forums) may help him connect to others. I didn't really know others with Type 1 until I was in my mid-20s, and I think that's in part what made me want to strive for better control.

13

I have seen very strong positive mutually supporting relationships among particioants in summer camps. Any chance that this might help?

14

It can. I suggest a residential diabetic camp if you can find one. A person who knows a lot about this is one of our teens, Caren. She will be a camp CIT at one of the diabetic camps she used to attend. She is 16 (I think).

I left for 30 days to go to a regular summer event less than month after being diagnosed and my adventure (dont get me wrong I loved it) only made matters worse. So I think if you are considering a camp it has to be the right one for both him and his diabetes

15

The TOOLS are NOT the issue I'm afraid.

=============
Change your channel….

Radically change the tune you play 24-7-366.

He is not your son, only a teen. Treat him like he was not yours and you want a particular result. You want 5 tests per day… you want to understand why he keeps spiking while at school (suppressed smirk)… endless possibilities. He wants to go to the movies with his buddies… ok. What is he going to give you in exchange for that ? What will you offer him?

Is HE talking to YOU, or are you the only one doing the talking???

Depending on what you specifically want him to do, there are things you can do to cause it.

Bribery has many flavors. Cash, cell usage, all kinds of carrots to offer.

All kinds of things you can do you have not imagined trying yet…. you don't care which one works as long as something does…

The "tools" provide you more "comfort" than they provide him. Something to program, something to have the illusion of personal control, "direct input" with… but they change nothing important, nothing that matters for him.

What do you believe is his basic resistance… given up? Pretending not to be diabetic anymore? Too hard to manage this crap and get an outcome he's proud of? As his mom, you have insight even we his peers cannot as easily.

For the record, gotta be careful with the "better" stuff. I suspect no matter how poorly by some standard ANY of us are doing at a given time, we are doing the best we are capable at that moment for better or worse. Teen or not, we are all struggling.

Have you ever given him a total break from his diabetes? Look up the term diabetes vacation. Or just take him out for a milk shake, a pizza, and do ZERO, no whining, no nagging, nada about whatever happens BG wise. Just be mom, and give the boy a break, just one. Bet thats changing your normal channel… no?

You can play catch up on the back end of the "fun" whatever form that takes. And have the discussion(s) in the same manner you would if for example you found him drinking alcohol. You can be simply a grown woman, someone with major life experiences, and dumb decisions he has never faced before. In that role, perhaps, you will reach him…. ? Try that channel perhaps?

Depending on exactly what you seek, there are definite suggestions many of us possess.

Any of this help, IYO?

16

Thank you for your considerate reply. It was thought-provoking and helpful. In my desire to have him take the responsibility and manage the diabetes I realize I have been giving him too much of the responsibility and it must be overwhelming to him. I have decided I need to be his partner in this until he gets older and to ease some of the burden. Rather than just telling him to check his blood I'll show up with meter and test strips in hand and do more to make it easier for him. All of these responses have been helpful in making me think about it from his perspective rather than just my motherly one. Thanks to all who took the time to respond to me.

Angie

17

Hello Angie:
Pleased to hear you found a good, "new" approach.

Sometimes we just want someone else to take the burdens from us, just for a little while, until we can tread water once again. And sometimes we require a swift kick in the pants, need protection from ourselves at times.

If any of us can help, don't hesitate to ask. We are his older brothers and sisters, we will help if we can. Its one of those "rules" they forgot to mention in the classes. We have his back, any yours...

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