FUDiabetes

Worried Mom of 16 YO T1D son

Hi all,
My son is 16 and not always consistent with his management😬. He doesn’t always take insulin when he should, or does not take time to be as accurate as he should. His Last A1C was 8.2, which was up from 7.2 three months ago. I know part of it is his age and hormones, but I am terrified at the thought of him going off to college. I have a hard enough time getting him to remember to empty the trash, how do I get him to focus more on being more accurate and consistent??? Any tips or advice from parents or teens would be great. I find myself being that Mom… you know that one that asks, “ Did you check your sugar?” when I see him snacking, or “Did you dose for that?”. As well as “Did you remember to take your Lantus yet?”, or when we go out to eat “Did you bring your kit?” He is a great student, and a good kid (other than being a sarcastic snot at times- he takes after Dad) but I am terrified he does not really get the long term consequences of poor management

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If you spend a bit of time reading you will see that many of us share the same fears. Honestly, an A1c of 8.2 doesn’t really indicate terrible care, he is doing somethings right most of the time. It isn’t optimal, but my son has many D friends with A1c’s in the teens. My 2 cents is back off a little, he needs time to adjust to doing it himself before he gets to college. If you are constantly reminding him, then he won’t be as ready when the time comes. One thing I can suggest is to get a shot caddy (if he is using syringes) or a big 7-day pill box if he is using pens, that way he can learn to remind himself by looking at the box. While this won’t ease all of your fears, it is at least a concrete step you can do to help.

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I am going to start right off by saying I have no diabetic children. It’s just me who is the diabetic. I think most diabetics I know could say with certainty that their “good” control has waxed and waned, and certainly they have had periods in their life where they didn’t pay as much attention to their health as they should/could have. So don’t ever feel like you’re alone, or even one in a million.

I think the problem is compounded with youth. The feeling of invincibility in youth is ubiquitous. Doesn’t most everyone make safer choices for their health and well being with age, wisdom, and experience?

I’ve been Type 1 for a long time, and for a very long time, the only one within my circle of friends and family. I’ve often been approached by the newly diagnosed, and more importantly, the people close to them. I don’t know if you’re the type that finds it inexcusable to ever forget your insulin, or the type that thinks remembering it 50% is a good average, and most important, I am not ridiculing either of those choices. I know that walking a line of concern, caring, and support vs overbearing and critical, is by no stretch of the imagination an easy line to draw and walk.

I think the 2 most significant things I share with the parents/spouses/siblings, to help them determine where they need to draw their own line, are how I see the concepts of GUIDANCE and EMPATHY.

GUIDANCE: I always quote my sister, who when raising her children, liked to say, “when my favorite activity of choice becomes eating a long stalk of broccoli and drinking a tall glass of water before I go for a vigorous exercise session, I will feel qualified to ridicule the choices of everyone else. Until then, I recognize I don’t always make the healthiest choices, and I will do the best I can to guide and support good choices in my kids and others.” Diabetes involves a lot of lifestyle and self care choices that are similar to most healthy choices we hope we teach our children to make: eat well, don’t smoke, wear your seat belt, exercise, don’t become addicted to drugs and alcohol, monitor your BS. Although it may be cliché, it’s true that at some point control is lost and we have to hope they do the best.

EMPATHY: I can’t even begin to count the number of times I have had to hear things like: I don’t understand why they just don’t stop eating this, or doing that, or just start doing this - it’s not that hard! I always say - you do it too then. Walk a mile in those shoes - give up beer/alcohol, that donut with your coffee. Do it exactly the way you think it is so easy for them to do. Lancets are cheap - stick your finger 8 times a day. So are needles - stick those in 4 times a day. Carry a kit everywhere you go. Carry 2 old cell phones 24/7, (and sleep with one) in addition to the working one. Tape an old infusion line to one cell phone and the other end to your stomach, and tape an old CGM to yourself - Change your clothes, use the bathroom, shower, swim, roll over in bed. Every time you eat or do an activity think about what you need to do and how it will affect you. Instead of being sick in bed for 2 days, lie there for 4 days. Buy yourself some ipecac and sleeping pills so you can be sick to your stomach and tired when your BS is high cause you ate that cookie. AND, don’t come back to me in a week or 6 and tell me IT’S NOT THAT HARD, come back to me in 6 months or a year and tell how it was. It brings them a far deeper appreciation.

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Basal shots are super easy to forget! I’ve found that alarms on my phone are the best way to remember to take basal injections. I also use a Timesulin cap on my Lantus pens that shows how much time has passed since I opened the pen. It’s easy to forget that I’ve done my shot already too :joy:

The more routine diabetes care is, the easier it will be for him to remember.

If he’s having trouble remembering to bring his supplies, it might be helpful to look into a backpack or case that will make that easier. Currently, I put my meter in a big pocket in my wallet. My wallet is bigger than average, but then I don’t have to worry about remembering my meter. I think it’s a little bit harder for guys because they don’t use purses…

Careful dosing may not come until later. Even when I dose carefully now, it doesn’t always work out as expected. I never weighed my food in high school. I’d just eyeball things, estimate the right dose, and give myself a shot. Interference from my parents was not appreciated/welcomed. If your son knows how to estimate his doses properly, then I’m not sure what else can be done about careful dosing right now.

My biggest suggestion is to do anything you can to just make diabetes a part of the routine so it’s one less thing to remember… just something that is done. There are lots of different ways to do this… vibrate alarms on his watch/phone, an easy way to carry his supplies around (eg a new pack, or reducing the size of his kit so it’s easier to transport, meters in more locations in the house, etc), an app that calculates his dose for him, the pillbox for syringes Chris mentioned, …

I’m not a parent or a teen, but I was diagnosed at 8 and made it through those years. One of the big motivators for me to keep things in range now is that I feel crappy when I’m outside of range. It’s difficult for me to think clearly when I’m high or low which makes it hard for me to do the things I love and want to do. I think it would’ve been helpful for my parents to identify the more immediate impacts of uncontrolled diabetes on my doing the things I loved to do. Not sure if that will work with your son or not.

Hopefully that helps a bit!

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Ditto.

We are less than one year away from college.

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Thank you so much…

What immediate impacts would you suggest discussing? Were there certain topics you wish your parents had discussed ?

Thank you. I am trying to fuss less and quit nagging.

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It is easier to say it then do it.

Being a parent is not easy.

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It depends on his interests.

I really wanted to to do well in school so that I could go to college. The connection between how well I did in school and my bg levels was not visible to me. I’m not sure why! It’s incredibly apparent now though.

It is easy for me to think of direct impacts now: I like to swim regularly and need my bg levels to be in good range for that, I enjoy my job and need to be thinking clearly in order to do my job well (bg levels need to be in range), I tend to have more healthy emotional connections with others when my bg levels are in range, I tend to have more energy on a daily basis so that I can do all the things I enjoy when my bg levels are in range.

It is harder for me to think of other things when I was a teen because it’s been awhile (I’m 32 now) and because of other factors that are unlikely to be applicable to other people so it wouldn’t be helpful to delve into them.

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Hi CSRMom.
What drives him? No kid wants to have good BG just so that they can clean their room really well, or do chores.

And most kids don’t think about getting older and future consequences. It just isn’t part of the thought process as a teenager.

What are the things in his life that he is passionate about? Those are the driving forces that will make him want to do his best with managing it.

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One of the hardest things about diabetes, from a behavioral level, is that just because you do all the things you are supposed to, you don’t necessarily get reinforced for it—basically, I can have a day where I eat well, check my blood sugars, take all my shots, etc, and still my blood sugars are off which can be highly discouraging. That’s especially true for a teen with hormones. Furthermore, if he doesn’t have a CGM (which it sounds like he doesn’t if you are asking about testing), then you get the problem where testing is necessary to make decisions for good control, but the act of testing often comes with frustrating news—if when you test, odds are good you’ll feel bad about yourself, you aren’t going to want to test! That’s the cycle I was stuck in before I had my CGM—I’d have periods of tighter control, but inevitably despite my best efforts and also because you can’t always be putting in your best efforts at all times, I would have some results I didn’t like, and then it would become tempting to avoid testing and control would slip further. So if he doesn’t have a CGM, I would talk to him about getting one ASAP if at all possible (major selling point being that it’s way easier IMO than having to test regularly).

I also agree re: the timesulin caps and alarms being helpful (although alarms only work if you don’t develop the habit of just turning them off which is super easy to do). Also that an 8.2 A1c is not great but not the end of the world, so maybe instead of focusing on that, focus on how he can build responsibility for his own care. Also something to consider if it’s an option in terms of health care coverage, is whether it might be more effective for becoming more independent in his care management to be something he works on through some more regular appointments with a nurse educator or behavioral psychologist with experience with diabetic older teens/young adults, rather than having you be the one trying to manage and evaluate his progress.

Good luck!

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Does your son have cgms? Getting dexcom or Libre2, even for intermittent use may be helpful.
Afrezza is another great tool ( inhaled insulin), although not yet FDA approved for under 18.

Although current injected insulins are much faster than the R I started on, the higher A1Cs are typically associated with post meal spikes.

Visibility to BG trend (cgms) is what gave me the tools/knowledge and motivation to get improved BGs, and better understanding of how insulin works for me under different scenarios. Adding Afrezza (inhaled very quick acting insulin) provided even better control and flexibility with food timing.

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Hi @CSRMom. I’m a 23-year-old T1 Diabetic, and I certainly had times throughout high school and college where diabetes took a back seat. I will be back later to give a little of my own perspective, but I wanted to share this website with you: https://collegediabetesnetwork.org/
They have some scholarships that your son may want to look into for college and little booklets that could be conversations starters for you.

Diabetes sure is a tricky and unrelenting beast, and I feel like it’s completely normal for teens to ignore it for a bit. I know it must be tough as a parent to see your child go through this.

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I know I can’t possibly know what he or anyone with T1 goes thru on a daily basis. I think he is a hero everyday for not laying down and saying I quit

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Thank you so much for the info and the encouragement.

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He is on the Dexcom G6, but we have had a lot of issues lately with sensor failure, which isn’t making things any easier when trying to be consistent. Dexcom is sending replacements every time I call but when you have three fail back to back it’s very frustrating for him.

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He is an A student, loves to play baseball, wants to go into neurosurgery and of course loves his Xbox.

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Those are really great points and ones I hadn’t thought of…

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You sound like an awesome mom. You care, you recognize the things that he is doing well, and you are putting yourself out there (here at FUD) looking for tips about what else you can do to help him…and you’re looking for feedback on how to change something that you are doing (which not everyone is willing to adapt). You sound like a great T1D parent.

My disclaimer: I was diagnosed at 21 years old. My care has always been on me. My boys are not T1D at the moment and are not yet teenagers…so give appropriate weight (i.e. less) to anything I say in an effort to be helpful. I haven’t survived teen years yet as a parent.

I’m guessing he’s been T1D for a while, and that he’s largely in charge of his daily self-care, and that you’re checking in with him throughout the day to see if he’s really done what he needs to do. Does he react one way or another to your questions? I.E. You describe yourself as “that Mom”, but do you think your questions actually feel like nagging to him? I’d be curious if he has a full understanding of why you check in with him so much, and if you have a full understanding of how he feels about your check ins? My life is littered with miscommunications so I do a lot more “listening checks” these days before I proceed on my perceptions alone about a situation.

You mention in your profile one-liner that you are concerned about his control management since he’s now driving, and you mention in your post above your concern for him going off to college, and whether he understands the long-term consequences of poor management. That all sounds reasonable!

The driving aspect of sounds like something that there could be an agreed upon protocol for privileges. I.E. Do you want him to test before driving and only proceed if his bg is between X & Y? Do you want him to keep emergency sugar in the car? Etc, etc. And if those aren’t adhered to, then it’s a week without the car? Maybe? I think guidelines like that make it more about responsibility and less about being a “good diabetic” or a “bad diabetic” (not that you’ve said any of that).

Lastly, between you and him I would pinpoint which aspects of control concern you the most, maybe? Is it just the higher A1C or is it crashing lows or missed injections, etc, etc? I will say that my A1C ran lower when I was wayyyy more aggressive with insulin, but I had some lows that I never care to repeat. A steady 8.2 A1C is probably different than a rollercoaster 8.2% and every teenager family I’ve seen post on here has discussed the difficulty of the teen years as far as control goes. My control is different every single day no matter what I do, so I just go for safety, good choices, and the best I can manage that day. My A1C, I believe, in no way represents the amount of effort that I put into it. Based on the time that I put into my care, it should be at least a full percentage point lower than it is. But that’s just not how it pans out. But I give it 110% every day and know that I did my best. Diabetes is just like that for me.

I hope the best for you guys and hope you get some helpful information on FUD. There’s a lot of great people on here who want to help and pay it forward.

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