Our daughter (dx 12/19/17) is away at college in another state. She is NOT managing her T1 well. Her A1C was 9.8 at this week’s appointment and she’s not alarmed at all. My husband spoke with her doctor yesterday (thank God she signed the papers to give us access) and he said that she admitted that she’s not covering for snacks - which she did not tell him at her LAST appointment in February. Because she didn’t tell him that, her basal was too high and she goes low every night. He adjusted her basal yesterday, but that’s going to exacerbate the highs if she continues to eat and not bolus. (No pump yet - too expensive - so she’s on MDI.)
I spoke with her today - not telling her that we talked to the doctor - and she misrepresented the appointment. She said that the doctor wasn’t worried and told her that her A1C would get better after she got back on the Dexcom. (Our insurance changed their coverage of the Dexcom and we’re in limbo.) She also told me that 9.8 wasn’t bad and that I needed to stop looking at the internet. I’m sure that a lot of her attitude is related to being so high for so long, but it is still very frustrating.
I’m looking for some tips on how to support her in her health without nagging. Is 9.8 really no big deal? (She told me I was being a perfectionist for wanting it in the lower 7% range.) What battles should we fight and which ones should we let go? Any help at all is appreciated!
Ironically, her major is Nutrition and Dietetics and she said she’s interested in becoming a CDE. Sigh.
Hi Milaka @Mintlaka, first let me offer you a Warm Welcome to TypeOneNation Forum! I expect many folks here who are more conversant with 20 year old girls will offer you grand suggestions and advice. Second, your daughter sounds “normal” for her age and circumstances of being away at college. Fifty years ago my disregard for my diabetes care knocked me out of college; I smartened up a few years later and returned to the chore of getting my degree, with honors, going nights while working and raising a family.
You didn’t mention how long your daughter has been living with diabetes, but at her age if she has had TypeOne for more than just two or three years, she should really know how to adjust her own insulin; I know, some doctors, even good endocrinologists, will not let go and insist that patients become comfortable with diabetes management “fine points”.
MDI is really great and especially with a BGM [Blood Glucose Meter] she could do real good. She must be VERY careful not to stack insulin and cause herself to go low; almost never should she take a correction dose of insulin within four [4] hours of a mealtime dose. I would rather see her average BG a little bit on the high side rather than seeing her suffering from too many hypoglycemic events. Like you, I think HbA1c of 9.8% is a little too high.
As for what will “change” her so that she will manage her diabetes better is something different for everyone. Many of the people here who have lived with diabetes for over 60 years, like me, will tell you that they went through a considerable period of time where diabetes care was neglected or forgotten. I went several years without seeing a doctor and that meant not getting a “blood sugar” lab test that had to be done at a hospital. Yes, I’m paying now for “neglect” and I’ll tell that to your daughter.
Maybe suggest that your daughter join this forum - there are many college age members here who will happily talk with her and share how they are surviving.
I’ve lived though this and trying to force it just shut me down more, punishing or being “mom” about it just alway got annoying and was ultimately ignored. Support her the best you can as she’s an adult and is in charge of her health, it’s hard to be 100% all the time when it comes to your diabetes, it’s almost like your pissed because you have it so you say screw it im not gonna bother with it or wanting to ignore you have it. Obviously testing her limits with herself. I’ve been there. One high A1c isn’t the end of the world. I was in the 12s for the first few years you learn the tricks and hacks along the way. Suggest to at least take some kind of insulin when eating even if it doesn’t bing it down to normal it’s still will help keep it down some what.
Drinking makes it hard as well(I mean I can only assume that there occasional drink is consumed at college, Dexcom would definitely help with this especially) Good luck. It sounds like a rough patch at the moment but she will come around.
Thank you SO much for the reply. I forgot to say that she was dx her senior year of high school over Christmas break. We got diabetes for Christmas! She had a very long “honeymoon” period and the full force of it all hit her at the beginning of her first semester of college. Sigh.
She has used a Dexcom in the past. It was up for renewal and our insurance switched the classification and now it’s not covered under our pharmacy plan, but as “durable medical equipment”. So now we have to jump through all sorts of hoops to get the darned thing. She’s been without it for about 3 weeks now so that’s why the 9.8 A1C was so surprising. She’s been telling us that she’s doing well! Sigh again.
I’m feeling less panicked today than I did yesterday. I’ve talked with the nurse in her endo’s office, I’ve talked with one of her close friends on campus, I’ve talked with my husband (he’s on a business trip), I’ve prayed and I’ve slept! We’ll get through this. She’s a smart young woman and I think that she’ll come around quickly.
Thank you for your reply. It helps to hear the perspective of someone closer to her age.
I’ve tried to take the approach of being a coach - how can I support you? How can we handle this together? When she has her Dexcom on, I try to really applaud the good days and on the days when she’s not in range, just say “Okay, that’s over. How can we do better tomorrow?” It’s just hard when I can see that she’s 22 out of 24 hours in the 200-300 range.
We do have an agreement that I can only text once a day asking about her numbers. As in - only one nag per day. (All bets are off if she goes low, of course. Then I text or call until I get her.)
All this to say, her dad and I are learning too. We’re trying not to freak out and we’re trying to be supportive. It’s a fine line! We’re also learning how to have an adult child - she’s our oldest!
She’s a great young woman. She’ll come around. It’s just hard to see her putting herself through this when she doesn’t have to.
I’m going to encourage her to jump on here. (Of course, she may resist because I asked.) She does have a good support group at college - her roommate follows her on her Dexcom and prompts her to take care of herself, her big sister in her sorority is also T1 and is sharing the burden, and one of her best friends on her floor has a mom that is T1 so she (the girl) goes to her endo appointments with her and remembers to ask questions. I could not be happier with her friends!
Thank you again for your reply! I really appreciate it!
this… more than anything else, predicts a good outcome. Very glad to hear this part.
Your daughter is so newly diagnosed, please realize that grieving the loss of good health is a process and it will come very slowly. I know it seems scary to you, and that her control is “less than optimal” but with the support she has and the contact with others… means she is less likely to fall into a denial or depression that could take years to unravel.
it took me years to figure this out. and after 40 years with t1, control is never perfect.
You welcome, I know it’s a hard thing to go through and I’m sure she isn’t having the perfect time either. Having that support from friends is just amazing, when your away from home, you count on your friend to have your back, they are as good as family. Its good to hear they are trying to get her on track
I just want to send you some more encouragement. I am your daughter’s age but was diagnosed at age 10. Ever since I got to college, managing my T1D has never been harder for me. I can’t imagine being newly-diagnosed when the normal routines of high school have just been cast aside, dining hall food and takeout are all that there is available to eat, and the stress of schoolwork and making new friends is piling on to add insult to injury. You and your family were given one of the most difficult periods to have to dive into this headfirst, and I so admire you and your daughter for persevering.
Everyone is different, but if my experience has been any indication, I suspect that your daughter might be going through some intense, emotional struggles. I’ve been told that type 1 diabetes and depression are linked, and it makes sense to me — the disease turns your world upside down, it’s a 24/7 job that never lets up, and seeing out-of-range numbers can make even the most confident person feel like a failure. In my opinion, it’s no wonder that your daughter doesn’t want to talk about her condition much, when T1D probably feels like it’s taking over her life already. Some of these feelings can be overwhelming and scary.
All in all, I just want to assure you that it seems like you and she are doing all the right things. You’re communicating with doctors, friends, and each other. Even letting other girls at school know that she has T1D in the first place is a major step; it took me years to get over the fear of judgment from my classmates. I applaud you both for your efforts. Since she is your oldest child, I can understand how hard it must be to trust her to figure things out on her own. My parents always said that they reminded themselves that it was ultimately my disease, however much they might have wished that they could take it from me, and that I would need to be the one to manage it by myself as an adult.
Please know that you’re both in my prayers and that you’re not alone! My doctor always reminds me that a higher A1C doesn’t erase the constant, daily struggles, and I’m sure that as your daughter establishes a regular routine, her numbers will stabilize as well.
@Mintlaka I can relate to your daughters experience
I was diagnosed at 8 and went through a rough patch in my teens and twenties - especially when I was in college. I had the need to really “get away” from my diabetes and experience college life the way my other friends did. I’m pretty sure my mom was also just as worried about me - she called me pretty often that first year - but we were able to find our balance and she was a great support. There were times that I had to call her to bring insulin to my campus (about an hour away from home) because I was all out. She never once made me feel like it was an imposition or that I was irresponsible (even though I was) - she just quietly supported me and offered any help that she could. I think that made the biggest impact on me - that it wasn’t a big deal when I messed up and that she would be there to help me when and how she could.
I’m sure that your daughter will figure out what she needs and how to better care for herself. It can be tough and scary (for you especially) but it’s important that she knows that she’s ultimately responsible for herself and her decisions and that you will be there when and how you can when she needs you.
I feel 4 u bc I was really rebellious from about 14 to my mid 20’s. I’m in my 47th yr and I can reassure u, things will get better. Especially if she has future plans. I went on to become an RN,CDE, married w 2 kids… who aren’t T1 but huge pias. In my teens, mdis, home glucose testing and A1c testing were all brand new. My A1cs were around 12. 9.8 is high but w small changes in daily testing, dosage and diet adjustments…all easier said then done, she could bring that # down 2 7 or less w/in 3-4 mo. Her attitude isn’t bc of ^^bgs, she feels angry and resentful that other kids seem problem free and she has 2 do all of this xtra stuff, she doesn’t feel her best, and you’re worried. She’s probably embarrassed about injecting herself or getting and treating lows in public. It’s a lot pressure. I still hate having 2 explain why I’m perspiring perfusely in cold temps, or my kids constantly asking if I’m low even when I’m not. You’re worried which I get, but she has 2 get through this on her own. That doesn’t mean u can’t give her guidance, encouragement, but learn 2 pick your battles and how 2 tactfully get your points across wo sounding like a nag. As a mom, I’d definitely, but quietly keep tabs w her docs. This may also help put your worries at ease. I really hopes this helps.
Well as someone who is in the same condition as her, I wasn’t taking care of my diabetes at all until this last year. 9.8 isn’t the best but there is a lot worse. My parents and family use to blame everything I did on my blood sugar, if I had attitude, or was irritated, or even sad, they would claim I had a high blood sugar, so I think you should be careful to blame her attitude on her attitude on her blood sugar, because it use to make me retaliate in ways that would only hurt my health (I would just not care because they blamed it on that) Although shes in college she may still like some help, with counting carbs, or other things, (I know I do). She will find her “move” and stick to it. It took me almost 5 years to start actually taking care of mine and it’s still not perfect. Her major sounds like a great fit, I am going into nursing to hope to be a diabetic educator! If anything message me privately maybe me and her could connect with one another.
Hello if you need to talk,or just need help with anything,I’m here for you,I’ve been a juvenile type 1 diabetic for 44 years,I’m crying as I’m typing,I would love to help you if you let me.god bless you you can do it.
Hi @Mintlaka. I’m a happy diabetes dinosaur - have had it for 50+ years now, and none of the technology available now existed when I was in college. I’m pretty sure I was the only diabetic on campus, in fact. Now that it’s more prevalent I understand many colleges have groups for those with diabetes. Some call them “support groups” and there’s nothing wrong with the term or the concept; but for those who may be turned off by it, or don’t need support so much as friends with diabetes in common, I’ll keep it more general. When I got to campus I notified student health in case of an emergency, and that could be a good place for her to start. You could casually mention checking with student health to find friends on campus even if it’s just to help each other out if they need supplies, etc as well as build friendships. Hopefully fellow students will help her see (if she doesn’t come to it on her own) how managing her diabetes may well prevent emergencies on campus or in the dorm. Some people hide their diabetes, but even those of us who don’t, would still rather blend in than call undue attention to ourselves due to a medical emergency.
Since her CGM isn’t covered right now you could look into the Freestyle Libre, which does require a prescription; but out of pocket costs are less “relatively” small (check Goodrx for costs in her/your area) and the sensor can be worn for 14 days. Unfortunately it does not give the alerts some of us need, and you do have to swipe periodically to update your receiver to see your graph, but it’s pretty quick and simple to use.
College is a time of big adjustments. There is more stress, less consistent eating times, less time to exercise - all cause higher A1Cs.
My 2 boys who went off to college had to switch endocrinologists. Their endocrinologist emphasized outcomes will depend on time in range for health. You will want to jump through the hoops to get the Dexcom. The endo should help. 9.8 can probably justify it. One of mine did not want the Dexcom, but relented when I said I needed to know he would have an alarm for if he went low at night. I think that what helped them is their Endocrinologist told them in high school what levels will practically guarantee complications in 5 years, 10 years, etc… and what the complications can be.
Their first appointment showed .7 gain on A1C but still under 8. For Christmas they wanted dumbells for their dorm room.
I send low carb and zero carb snacks in care packages. When we talk to them once a week we ask for generalities about their diabetes. Are they seeing a trend that week, (high at night, lunch,etc…) what do they think is causing the trend, what is their plan (adjustments to humalog ratio, more/less lantus, diet) The boys have always had to make adjustments when school is in and when they are on vacation. If the doctor has her logs or downloaded her glucose meter, he should be able to help pin point the problem. If she will download her glucose meter, you can also help her. You might suggest she looks at it and diagnose herself. She sounds like a smart girl.
I have a a 7 year old diagnosed diabetic that went to school out of state. It was a pretty scary ride until the EMT’s showed up one night when she was having a severe low. We moved her to the 670g closed loop by Medtronic and it was life changing. It meant sleeping through the night and taking away alot of the responsibility to control. She was in fact over controlling because she was so concerned about things like alarms in the middle of the night. Her A1C is now 6. She participated in Division 1 athletics, got her MBA and is now fully employed in sports management in another state. See if they can work with your insurance at Medtronic. For us personally a pump that would suspend or increase when needed without tons of alarms was the ticket for her. You only get 4 years and no do over so make them your best 4 years!
