FUDiabetes

Worried Mom of 16 YO T1D son

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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I’m not awesome at all…I mess up all the time, but I love my son and want what’s best for him. I think that your suggestions about driving and control management are great and I am definitely going to discuss it with him.

He was diagnosed with T1D 4 years ago on Friday. Nobody in my or my husbands family is a T1D so we missed all the signs. He was in full DKA and spent 4 days in the hospital. The second day in the hospital, he gave himself a shot for the first time, and he’s given himself every shot since then.
I think he is one of the strongest people I know and I am so proud of him.
I’m not as concerned about his A1C, it could a lot worse. It’s more concern over some of the habits like turning off his alarm when it goes off to remind him to take his Lantus and continuing to play Xbox or watch TV.

I have to be honest though, I’m not as concerned as I was before I got all the wonderful feedback and responses from everyone. It has really given me a lot to think about and consider.

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Our stories are eerily similar. You can read about my son’s diagnosis at 12 (no one in family, DKA, 4-days in hospital), the link is in my header you can access by clicking on my avatar picture. My son also played two years of high school baseball, but went a different direction this year and is drumming in the band and taking 4 AP classes so he can knock out a year of college before he graduates.

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Sounds like it! I don’t know how old your son is but it sounds like they are close to the same age. I do worry about his BG levels sometimes. Garrett has these super highs sometimes, no ketones, high 300’s low 400’s but they go down with extra insulin. Sometimes he is mis dosing but other times I know he is counting accurately. Then he tends to run low in the evenings before bed even with ratio adjustments. He is already taking 40 units of Lantus and his ratios are 1:5 for meals and snacks. He will go to bed some nights at 115 and wake up 245. His endo told us that it would be a moving target for him during the teenage years but sometimes it’s just crazy.

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Everyone has been so amazing and encouraging. I really don’t know how to thank you all for all the information. Just knowing that someone else knows what it’s like and shares the same fears means so much. I really want to educate myself more so I can support him better. I think you guys are all heros

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Hi @CSRMom - Looks like you got a lot of good feedback here already. I have Type 1 (and lived through my teenage years :slight_smile: and I have a 4 year old with Type 1.

I like the suggestions around making things easier but sometimes you need to do a little work to make things easier. I am not trying to load you up here, but just sharing information.

In my experience getting the basal right is the best place to start.

My ratios are very close to your son’s. In my experience taking a large shot of insulin (like 40 units) all at once can lead to unpredictable performance. This has to do with how the insulin in absorbed. Smaller shots tend to absorb more uniformly.

In my experience, I used to take one massive shot but then I split into two shots a day (I know more work for your son) but this lead to a better basal profile which makes the rest of the control easier.

Then I got super lazy and got a pump… so I do not need to remember when I took my long acting shots.

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My experience also. Huge.

We use a pump so various basal rates and able to adjust on the fly when needed.

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So we went on a pump for exactly these reasons. If you break up your basal dose of Lantus into two shots you can give less in the morning, and more in the evening which may give you both better absorption and some additional control.

Additional things to try are to lower basal on days he does more HARD athletic work than the other days, as well as adjust his meal doses down a bit on hard workout days. We found that the amount of exercise daily required my son to adjust his next meals insulin.

Oh, and the highs are often (not always) due to hormones are out of your son’s control. We are currently in a “level” period, but in the last 3 months we would find 300’s and even 400’s that required 3-5x more insulin than a normal high to correct. It is an unfortunate side effect of growing.

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i am 73 yo female with type 1…diagnosed at 31 yo…many changes since i started testing, however, NOTHING has helped as much as having a FreeStyle 14 day CGM on my arm! takes seconds; tells u where u r without the whole set up for finger sticks. for now i still take shots of Humalog predicated on prior results…eventually figure it out, n Lantus at supper…keep glucotabs at the ready for dips…my daily average for glucose has dropped ~ 20 points for the past few weeks…he may find this is a big help n not such a repetitive chore…good luck with that…doesn’t sound like a big deal to finger stick but it is…just hover the reader over the stick on, through clothes, coats etc n he will KNOW where he is…

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Hello, I am back! I’m going to write a little from my own personal experience. Of course your son may view things very differently than me so I’m not offended if this is ignored. Also I’m not saying that my experience is the same as all T1 teens experiences (to each their own!)

So I think something we can all agree on - life as a teen kinda sucks as is. There are just a lot of things going on socailly, physically and mentally and those years with mounting pressure for excellence across the board in school, sports, extracurricular. And then diabetes on top of it is just a lot a lot going on.

I was diagnosed when I was 6 and had a lot of support from my school at the time. When I got to high school, I took on more responsibility and didn’t want help from parents or the nurse. Pretty much, I wanted to make friends on my own and cut ties with diabetes so I could feel normal and independent. (I feel this is pretty typical of most teenagers to just want to fit in. I also believe most teenagers want to explore boundaries of risky behaviors (say drinking or in this case - not optimally managing diabetes). And, most teens feel invincible like some others were saying above. Reality was very much in the moment and I wanted to have that experience as a teenager, like a normal teenager).

Of course with hormones and technology not so great then, my blood sugar was really inconsistent. HOWEVER, I didn’t really know anyone else with diabetes, and I felt like I was doing alright with it with nothing to compare my numbers to (my A1c was in the high 7s, 8s, 9s).

Being in high school, I wouldn’t necessarily say I was defiant against either of my parents. The only thing that really sent my adolescent rage on fire was when they would pester me about diabetes. And I would really rage. Like kind of spiraling manic anger against them, the world, any greater spirit for making me have diabetes. It seemed pretty unfair at the time.

When my mom would ask if I tested my blood sugar in the morning, I would spit back at her asking if she brushed her teeth. I knew what I was supposed to do, and my mom asking about it only made me feel annoyed that I had to do it in the first place. But significantly, it also made me feel guilty that I wasn’t amazing at taking care of myself (knowing that it was scary, disappointing, and saddening to her). I knew what I was supposed to do, but in my gut just did not want to do it at all. Kinda like waking up in the morning to workout and every cell in your body is screaming and groaning at you not to do it.

I knew testing my blood sugar and giving myself insulin would help prevent long term consequences. I imagine that your son similarly has this understanding. For me, I knew this as a reality but it almost felt imaginary that I one day would be that adult that could have to deal with the consequences. So then, I didn’t really care that much that I wasn’t taking care of myself. I could manage my daily life pretty fine without paying too much attention to diabetes. So even if my mom was poking at me to test my blood sugar and even if she willed and wished, I felt grown up enough to manage it (and whatever fantasy consequences) on my own.

While I was in college, I was pretty illequipped with taking care of myself, but my mom did stop playing the hover game with me. It certainly didn’t perfect my management but it take a lot of tension off my shoulders because I didn’t have to daily shoulder the burden of thinking about disappointing her. I know from the beginning she only wanted the best for me and didn’t want to stand idly by as I ignored my disease out of seemingly laziness. I’ve actually talked about this with her, and it makes me tear up thinking of how amazing she was with handling my disease when I was a child and how she had the strength to see me grow into my own with this disease, knowing I was messing up as I was going along. She told me all she wanted to do was shake me and make me realize that little efforts should save me in the long run.

But diabetes is tricky. Her wishing and willing wouldn’t cure my blood sugar swings. It really took a mental, emotional, physical journey to get me to pay attention to and work at controlling my blood sugar more. I won’t go into all of that, but I’ve been thinking about some things that I think would have helped me as a teen (helped me psychologically handling the idea of T1 and also just help me have better blood sugar control overall). (again this is just my own experience, this may not be helpful at all for your son!)

I wish diabetes wasn’t this thing in my mind that made me feel different. Something that has helped me recently with that is 1. this community at FUD! 2. following a bunch of T1 accounts on instagram (that I’m assuming your son is already on?) (suggestions: type1.emilyjo, thediabeticcactus, thediabeticjourney, everyday_t1d, diawareness) 3. local meetups with other T1diabetics in the area. All have helped me feel less alone, given me education and ideas on management, and also have given me a sense of pride in being a diabetic. Also, personally I’m pretty competitive and once I saw others absolutely crushing it with their management, I wanted to challenge myself to do that too.

I wish I had had a goal(s) out of diabetes management when I was a teen. It felt pretty aimless, and to be honest, long term consequences don’t matter much when you’re dealing with day to day drama and high school. I think @Eric mentioned it above of asking what motivates your son. I think this could be a great jumping-off point with your son on creating intrinsic motivation for managing numbers or just remembering to respond to alarms from his phone. For me, I think in highschool if I identified that I should better manage my blood sugar so that I could study for the SAT more effectively or play field hockey without as many diabetes breaks, then I think I would’ve been slightly more inclined to try to manage my sugars.

Earlier in high school, I wish I had had someone who was older who wasn’t my parent whom I could confide in about life in general and also diabetes. I found that in a teacher my senior year, and they helped me sort with troubling feelings and my lack of cares. It was just nice to have someone who had perspective but also was just there to listen and hear me try to sort through things.

I wish I had had a conversation with my endo/parents about what college and being on my own with diabetes looked like. This obviously is a later topic for you guys if you were thinking about it.

I wish I had the space to have a conversation with my mom about balancing the responsibility between us and how I would want to communicate with her about my diabetes and what respect we wanted from each other. Of course it was hard because, ya know, raging hormones, but I think I really would have responded well to that actually. Just like an establishing expectations periodically.

Well, now I’ve completely written wildly too much, and I’m sure that this is minimally helpful at this point. But anyways, if your son wants someone to talk to (about diabetes, parents, college, pursuing medicine, really anything), I’m here! Sorry for the long post!!!

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Nope. Insightful, honest, sincere.

If my boys ever get diagnosed, you’re on my short list for them for role models. Just a heads up.

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Not knowing the full range of your parent/son relationship it’s not a place to give advice, I can can only offer a bit if my own experience and how my parents trusted me with self-care.

I was diagnosed T1 at age 7 and I am nearing my 49th year living with it. Care was much different in the 1970s, no blood testing, no pumps, no A1C, but the best thing they did was send me to an ADA summer camp. I came home taking on my own testing (then it was urine and Clinitest pills in a test tube, stone age) and managing my own injections. I think we may have reviewed my logbooks, but somehow I felt like they trusted me to do this.

Maybe it’s more belief, but I feel that as a kid and teen the youth and metabolism has a lot of benefits and maybe we are more elastic ten brittle. My diet then was not well managed, and I really did not pick up regular testing until my early 20s. Maybe it caused me long term harm, but in my 50s I feel pretty damn good.

For 16 year old me there was nothing more important than establishing my own independence and found even my Mom’s occasional questions as doubting and invading it. I probably over reacted, but even as an adult I sometimes got over the phone a “Don’t overdo it”. I regret some not acknowledging how much may parents cared and worried. But they left the management largely to me.

Whatever you can do to establish this trust will go a much longer way than lower numbers. It does not mean blind trust, and it’s certainly right to ask for some level of communication. Can this be negotiated? Of course.

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This depends a bit on his personality type but I would suggest: Ask him what he wants. Ask him how he feels. Ask him what balance he wants between BG outcomes and enjoying life.

First and foremost make it clear that this is a conversation where you won’t judge. Some people really don’t care about their diabetes. If you discover he doesn’t care, don’t try to change his mind, that’s just where he’s at for now. Don’t lecture about complications. He knows.

However many people do care, they want to avoid complications, but they get in a cycle of neglecting it, and then feeling guilty, which leads them to do all sorts of avoidance things to run away from the guilt and self-loathing.

Talking may force him to confront difficult feelings for him so try to guide him through it. Remind him that diabetes isn’t fair and that he should praise himself for what he achieves rather than beating himself up for what he doesn’t.

What kind of A1c does he want? Does he feel his current management is too hard? Is he burning out? Or is he just forgetting? Or struggling to find motivation?

Once you establish what balance he wants to have, ask him what kind of help he wants. Does he appreciate it when you remind him? What about text messages? What work he can offload onto you (like refilling his kit or reviewing his numbers once a week)

One other message I think is valuable here: “We are what we repeatedly do. Excellence, then, is not an act, but a habit.” (Aristotle)

Good management is not about “trying”, it’s about creating and maintaining good habits.

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Beautifully written. I know this thread is one that I will refer too YEARS FROM NOW. Packed full of wonderful stories and advice.

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Thank you so much for sharing. I really appreciate your honesty and insight. I have been open with Garrett about wanting to understand and help support him better. I hope that he will decide to visit this forum like I did. I have told him about it and really think he would like it. We are at the Dr right now for his 3 month check up. So I will fill everyone in later.
Larissa, you are a very genuine person and I think you are amazing. Thank you for sharing so much and thank for the encouragement

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Well, I was going to recommend the G6. (My experience with the G6 has been outstanding). My problem is going hypo. My wife loves the G6 because she gets my alerts and alarms on her phone. One of my symptoms of going hypo is being very sleepy and we are afraid that I would simply go to sleep and slip into a hypo-induced coma.If she gets three alarms of BG below 60, she calls me. Three more alarms and no response from me, she can be home from work in 15 minutes. So far, this has never happened.

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We had this happen and it was a transmitter problem. You have to be very direct, very persistent, and very forceful on the phone with Dexcom to get them to replace it. But once they replace the transmitter we’ve had no further failures.

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I wanted to scream my praises for the Sugarmate app used in conjunction with the dexcom app. I love that Sugarmate alarms are much more customizable. It allows for lower alarm thresholds, alarms set for certain times of day, and phone call / text (including GPS location) notices for alarms to other people. I feel like it means people can still be notified that I am potentially having an issue, but requires less “active” monitoring on the part of others. Plus - if I don’t need help, like a worried mom :wink:, it leaves me with the option/responsibility to text the person receiving those calls/texts and inform them that I have this under control.

I wasn’t exactly sure what you meant by “sensor failure,” but wanted to say that I have had a lot of luck fixing “signal loss” errors by deleing the dexcom from the list of bluetooth devices and then re-linking when the dexcom app sends me the “bluetooth device found” notification.

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You’ve gotten a lot of excellent advice and insight here, but a thread like this is basically a sure-fire way to pull me out of the woodwork so here I am, with more thoughts and feelings for you. I’m also currently low so we’ll have to be sure this gets proofread for coherency :crazy_face:

I’m currently 22, a recent college grad, diagnosed just before I turned 2 and have experienced a few pretty serious bouts of diabetic apathy and burnout in my teens and young adulthood. We’re talking A1Cs in the 9s or 10s type of burnouts, giving insulin but really not checking for days at a time, quite a bit worse in the management department than you’re currently seeing from your son. I think personally, I got tired of so many years of diabetes being a constant worry in my life and I felt that ignoring it and doing half (or less) efforts at management would let me feel more “normal” (although, fun fact, if you’re running a high BG and feeling like crap the whole time you are not, in fact, feeling “normal” at all). I knew the long-term consequences of not managing things well, but young people often feel invincible and I was definitely among that crowd.

I was basically fully-independent (with regards to diabetes management) by the time I was 16, I went to endo appointments alone and had relatively few check-ins from my mother, and at times during my teenage years I did pretty well with this (A1Cs in the 7s) and at times I did very poorly (we’ve discussed those numbers already). There was a consistent correlation between CGM use and willingness to put in effort and good results, and I am skeptical that anyone would have been able to influence me on how those parameters changed. Had my mom been checking with me more, to be perfectly honest with you I probably would have just lied as needed. It was up to me to decide to actually do what needed to be done, and pestering from my parents wouldn’t have swayed me either way.

I hope that hearing of my past here doesn’t freak out you or any other parents of T1s here, I promise I’ll get to positive stuff here soon. Managing diabetes is hard. Being a teenager is hard. Being in college is hard. Life is hard. Burnout is not necessarily inevitable, but given the lifelong nature of diabetes it is relatively common. What I really want to stress here is that suboptimal control caused by burnout or general rebellious teenage-hood is not forever. I’ve personally made it to the other side, learned a lot about better diabetes management, developed a whole host of cool coping skills to avoid burnout to the degree I have seen in the past, and basically grown up and come to accept that diabetes is a part of my life that cannot be ignored.

I think some of the best things to help encourage a positive mindset with T1 are, as @LarissaW suggested, engaging with the online diabetic community whether through Instagram, Youtube, Facebook groups, whatever. Diabetes can feel quite isolating at times and connecting with others or even just seeing others taking care of themselves definitely helps with that.

I think my transition from having my mom actively engaged in management to me doing it alone could have had a bit smoother of a transition phase. She went from asking all the questions like you to essentially letting me do my own thing relatively quickly. Something that may have helped me during a transition would be to establish good habits for looking back at the past week or month or 3 days or whatever by looking back at data together. Diabetes involves a lot of data collection but looking for trends and making tweaks is where you can really make improvements, so it might be helpful if instead of only checking in on granular things (like whether a snack has been bolused for), there was a check-in and go over trends and stuff, discuss openly how things are going. It also respects the T1 as the decision maker with regards to diabetes management, lets them feel a bit more adult, but allows you to offer insight and advice if things are proving troublesome.

Okay, I’ve worn myself out rambling here but I wish you the best with this situation. Was that helpful at all or did I only say scary things?

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Thanks @glitzabetes, your post was amazing (even more so that you were low while writing). Mine would probably look like this: I Wsa thkig bg thawts…

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