Hi. I'm new to this site, so I'm not really sure how this works. I'm looking for some advice from other parents with T1D kids. My T1D daughter was dx at 5 years old. Everything has been pretty smooth so far, but things have changed over the last year. She's been on the MiniMed pump for almost 5 years. She is 11 years old now and has been lying about what her BG levels are and not giving herself boluses for food. She went through a burn out phase, which we took over all aspects of her diabetes. Checking her BG, counting her carbs, giving boluses. She was okay with that for a while, but then she wanted to take it back and have more "control". We've discussed the importance of taking care of herself and even discussed the consequences of not doing so. Especially over the last 6 months, she's been taking food in the middle of the night, anytime really, and not giving herself any insulin. She doesn't check herself at school or give any insulin for lunches. We came to an agreement that each night I would check her meter and her pump to make sure her numbers have been okay and her BGs were actually checked. I have been very consistent with this and we are constantly talking about it.....to no avail. Each night there is at least one BG not checked or bolus given. I don't want to punish her because she didn't ask for this responsibility. But she totally wants to ignore the fact that she even has T1D and I can't be with her 24/7. I'm trying my best to manage it, but her latest A1c was 10.5 which is the highest its been since she was dx 5+ years ago. She had told me over the last 6 weeks that her BG was in the 100s. Not true when I downloaded her information. She was in the 400s almost the entire time! I'm not sure what else to do. How can I make her understand how important this is and that I need her help?
One solution might be to use NPH in the AM, which is basal but has a midday peak that would cover lunch. You don't need her help, she needs her help. She has to do it for herself. I was dx'ed @ 16 and went through a pretty, uh, wild period and figured I wouldn't last until I was 40. Part of that included a fairly casual attitude about shots and testing which was very much recommended by the University of Illinois health care system and became sort of a habit. If you're going to an after hours when the bar shuts down, you want to know what your BG is! She really has to want to do it though.
I have a 15 year-old and it's constantly a struggle to get her to do anything.
Thank you...I'm worried for her because she's just not wanting to recognize this and its hard to sit back and just talk and talk...
I almost think it might be more of an 11 year old thinking everything her parents want her to do is horrible and stupid. My daughter has realized that doing well in school is useful but is a total slacker about chores and pretty much participating in the family economy. "what do you want to eat?" "Nothing" *buys what I like to eat* "there's nothing to eat" argh.
I have two thoughts for you from being 1)diagnosed at the age of 11 myself and 2)having a studied health behavior for my master's degree.
First, it is really important that her blood sugar numbers be just that-numbers. Not "good" or "bad" numbers, just numbers. They need to be "in range" or "out of range" if you have to label them as something. From personal experience, I lied to my parents because I felt ashamed when I had "bad" numbers. It's important that she know she can tell you what her numbers were, no matter what they were, and that you won't get mad at her or be disappointed in her. Start seeing numbers as a data point that tells you what to do next. High does not mean bad, it just means you need insulin. Blood sugars, especially in preteens and teens are never going to be perfect, even if she does everything right. Hormones will wreak havoc, and you just have to hunker down during the teen years, but getting her to learn to be honest with you is a big place to start.
Second: the ability to understand that our actions will affect us personally is a higher brain function that doesn't fully develop until your early 20s (which is why so many teens and young adults do risky stuff). They can comprehend that actions have consequences but literally can't fully comprehend that those consequences could happen to them. So, all that is to say, trying to reason with her about future consequences of her out of range sugars (like neuropathy, etc.) might not be super productive. She literally can't see that those things could ever happen to her yet.
I hope that none of this comes off critical or unsupportive. I'm just trying to give some perspective from my knowledge and experience that might help you figure out what's going on in your daughter's head. Being a D-parent is the toughest job out there! I know I gave my parents hell, and I wish they'd had some of the advice I've heard and learned over the year (and groups like tudiabetes!). You are doing an awesome job, the fact that you even are asking around about how to deal with this means you guys are on the right track. You guys will be OK, your daughter will be OK, and you have all the support of your tudiabetes community! Hang in there, mom!
Good point Erin. I would add one more thing which parents miss sometimes … Get her involved with other T1Ds in the flesh, via camp, local group, JDRF groups. For me that had an impact.
Sorry for the stuff you are going through…
I recently replied to a similar discussion, i recommend you reading that one as well, some good advice over there...
wishing you good luck!
I don't have children so can't help on that end. But I know one thing that worked for me. Show her a picture of this lady who died at 39. Remind her she might not die immediately or understand about her life span now (being so young) but she will gradually begin to look very bad and sick. Maybe she will be interested in avoiding looking like a sickly skeleton for a large portion of her life.
Welcome to TuDiabetes! Check out our group for Parents of Kids with Type 1.
Here a few recordings of live interviews we've done on the TuDiabetes homepage with different parents of kids with diabetes. They might give you some good ideas, and hope!!
Last week we had a live interview with D-mom Mila Ferrer, which will be available to watch in our video archive early next week.
And this one's just a good pick-me-up (because it sounds like you could use one :) I hope you find these resources useful!
Here's another great interview, with a fantastic guy who has type 1 and works with families with type 1: Joe Solowiejczyk. He's got a great perspective on coping with T1.
I was diagnosed at 9...30 years ago. I remember doing the same things you are describing. And I agree with Erin completely. Kids that age do not think beyond the "moment". Luckily I have not suffered any complications due to my lying and hiding back in the day. But only time will tell. I took responsibility of my diabetes when I got married and decided I wanted a family.
My advice to you is be patient with her and let her know that she's not alone. She will not be punished for bad blood sugars. But as parents you need to know what the true reading is so she can feel better. I know I'm preaching to the choir here.
This breaks my heart to read this. Let her know that you all are a team and need to work together in order to win this game. Also, you're goal is not perfection. I remember hating to go to my endo...it felt like reporting to the principal's office.
Please let her know about this website also. We have several groups that are specific to her age. She can vent and let go of a lot of her feelings. Our chat room is also an excellent place for both of you to meet people that are going through the same struggles.
Good luck and know that neither of you are alone in this.
Ack! I can't believe I forgot to talk about diabetes camp! If you haven't already, try everything you can possibly do to send her to camp! More than anything, camp gave me confidence and self-esteem with regards to my own diabetes responsibilities! How could I forget to say that?! :)
Thanks for all the feedback! I definitely keep the "good" and "bad" out of our conversations about her numbers. It's either "high" "normal" or "low. But maybe even that has a negative feeling. I'll try the "in range" or "out of range" terms and see if that makes a difference. She has gone to Diabetes camp and has made great connections there. She's even made friends through our local JDRF community as well. She's excited to go to camp this year too. She's an awesome kid!
I try to let her know that other kids have different medical conditions that they have to deal with. Severe peanut allergy, lactose intolerance, asthma. Those kids have to deal with certain things too.
We even celebrate "D-Day" and "totally carb out" every year on the day she was diagnosed. She gets to skip school(which never happens), go for mani/pedi/hair done/movies basically whatever she wants. She's made it one more year dealing with T1D. She deserves to be pampered.
I'll let her know about this site. I think it would be great if she could check out what other kids are thinking. I'll definitely be checking out the interviews and the parents
Hi, our girl was diagnosed at 8 and is now 17. For lunch at school until middle school, she went to see the school nurse, would call home via cell, put the info into her insulin pump and tell us how much insulin pump was to give. Usually the nurse would look on also, as they are required to do so. At home, we usually took over most of her care. She would do a lot of blood sugar checks on her own and put the info into the pump on her own as well, but I would say we split the care. When out with friends, she did everything. The only way she could have eaten without bolusing would be when she was out with friends, or if she ate an extra snack at school and did not bolus for it. We keep a written log and we check meter and pump. Not because we don't trust her, but that is the way we figure out if we need to make adjustments. We used to make adjustments every two days somewhere or other. Simply put, I believe your daughter is burned out from all the self management of her diabetes at such a young age. I would shoulder more of the burden at home, make sure an adult supervises her lunch bolus (which will be larger than the occasional snack). If you check blood sugars often, you will be able to correct for the fact that she snacks without bolusing. I don't understand why they do this, since they have a pump and it is easy to bolus. Basically, I would check blood sugars every three hours (which is what we have had to do anyway to maintain good blood sugar control as her blood sugars were very variable as a child, preteen and teen). We do night checks as well. Our DD has been responsible and has not done this. Even so, her blood sugars were wacky. She is young, too young for all this responsibility. She should be able to help with her diabetes care. But you, and you alone should have the control. You are the one responsible for her primary care. You must take over. And gradually, very gradually, with age, give her more responsibility. This disease is very difficult to manage in children and young teens. Even when they do everything correct, you are going to see crazy blood sugars. Take over. Seize control. Monitor her. Give her as little chance to screw up as possible.
You are asking a child to have the "adult" understanding... many of us (in theory adults) do not get "ideal" numbers either. The numbers per se are not the real issue, past a basic point.
Have you let HER tell you how you can help her? MIght take a couple days for the entire conversation.... Im going to ask you on Sunday for a bunch of ways anybody can help you with anything diabetic...
Then when Sunday comes around... ask her. Your list should have some generic, real kid friendly stuff... want to go to a sleep over... want to eat a piece of chocolate cake... want to XYZ...
I'm betting if your list is general (addressing your deeper concerns subtlely) with a couple of razor sharp questions tossed in... suspect you might get the discussion you actually want...
Have you attempted to RADICALLY change you channel? Do something/something(s) so different it makes her jaw drop, and do a double take? Stuff her full of cake, or ice cream, or soda, and do NOTHING to address it diabetes wise??? Obviously you will play catch up on the back end of the game, but may get/hold her attention if simply as mom, you took her out, and pretended nothing special was happening.
Would that radical change in approach make her receptive to a woman to woman talk?!?!
Has your daughter ever met the WOMAN, who also is her mommy, and learned about some of the stupid mistakes you have made? We all make them... it how we become adults.
I'm a fan of the "diabetic vacation" idea, look up the term. Essentially for 72 hours someone does everything she should be doing by the book diabetes-wise. No discussion, no debate, just it is done for us so the "burden" is no longer ours for a brief time. At the end of that time, then you have the chat(s).
Another approach would be what I call "matching". Every test she takes you match her one for one. Now you have no need to do the actual test itself, the goal is whomever getting the blood drops. If you want her to do 6x/day then that is what whomever does as well.
Makes for very informed discussion at the end of that week! The asking for tests is a different creature than having done what she does, is being asked to do... once you have done it yourself.
Ever used one of her syringes, (sic. a bunch of times)? No insulin, just putting the needle into your body, and then pulling it out. Try that game for a week.
If the OLD conversations are not working, the consequence(s) are not getting the result, time to change the blessed channel!!!
When she is taking the tests are you CERTAIN, her fingers are clean? Not talking alcohol swabs, nor hot water even, simply basic clean, so that when she picked up your cinnamon toast this morning, the residue did not effect her reading???
It is entirely possible as well, the formula(s) being used are no longer a) right, b) were never right perhaps. Its a math problem, no emotions involved, just basic math. Your goal is to get a lower result. Dont care what approach, method, bribery works, as long as you get there, right?
Tried the barter system? X readings gets X points regardless of results. Get a certain number of points and she can... ? Could work too.
On a "good day" our blood sugar is a three year old WAITING, begging to throw a tantrum. Somedays it does, and you keep going. Its the habit of such tantrums we need to crush. Which tool/approach do you plan to use???
This is a tough one. Already some great advice from others here. I was diagnosed at 8, had struggled with control a great deal, and want to bring up a couple of things:
My control seemed to worsen a great deal as I got older. I believe it was at least in part because I was still producing some insulin, didn't realize it, and didn't know to adjust for it at the time. Could this be the case with your daughter? Are you sure that her basal rate keeps her BG steady?
Also, not enough insulin, and erratic BG has some serious effects on one's mood and behaviour. This may be contributing to her difficulty.
What kind of food is she snacking on? If you keep only food around the house that will not affect her BG, or minimally so, like sugar free jello, her snacks won't throw her off as much.
You have to understand that to a kid, constantly taking your BG can be soul crushing. You need to cut her some slack. Don't bother her about missing one now and then. Figure out an estimated bolus to cover something that she eats a lot. Like: x units for this food. It's not as good as testing, but you're much better meeting her half way than her rebelling and self destructing.
Good luck. It's not easy at all, but you'll make it through this.
My daughter is 10 1/2. Super responsible for a kid her age, but she still forgets to flush the toilet sometimes and her dirty clothes stay on the floor until I tell her to put them in the hamper, you know? She has other health challenges besides diabetes (I'm the T1 in the family), and she gets burned out sometimes. As do I. I hate testing every day and bolusing for meals. Sometimes I forget a dose--not intentionally, but I'm busy and thinking about something else, and it happens. People tell you "you can live a normal life" and I don't know what they're smoking, but it's not normal.
It's too much for her. You can't make her understand anything, not the importance of eating vegetables nor the federal tax system nor the popularity of superhero movies nor the importance of taking care of her diabetes. Her convictions and thoughts are hers alone. If she comes to a realization, it will be on her own terms and in her own time, regardless of how less-than-ideal that might be.
I would just suggest you stop talking about it. You know she's lying about her numbers, and she knows you're going to figure it out when you download the data. Going over that conversation again will do neither of you any good, and she'll feel punished no matter what your intentions are. Just download the numbers when you need to and correct without saying anything about it.
If her ownserhip of T1 comes from you, then as soon as she moves out of the house, she's screwed. Taking responsibility, taking care of herself, needs to be something she does for herself and for her own reasons. Even if you were successful at making her do this to please you now, it would backfire, because when she's 25 and living on her own and you're not downloading her pump data anymore, she'll have no intrinsic motivation.
I’ve been a type 1 since 10 years old, I can remember my family scolding me for eating Oreos and all the other forbidden foods . I am now 35 and I am proud to say I am complication free not cause I ate Oreos but because I’ve had more good days than bad ones . When I think back to those days of being told what I couldn’t eat , one question comes to mind " why did my mom buy those foods in the first place . It might sound drastic but until your daughter decides that she wants to feel good instead of feeling weak, thirsty, and moody, all the time from high blood sugar you really shouldn’t keep any junk food at her reach . I don’t believe in wil power cause we are not bad for wanting that cake , chip, or cookie but we have diabetes and our taste buds don’t change just cause the pancreas isn’t working properly , so the only solution is to keep food at her reach that will not harm her bloodsugars
I was diagnosed at 4 and I'm now in my 30's completely fine. I did multiple daily injections until I got my first pump last year. My mother and I had some serious fights when I was a teenager (I was minimally compliant around then), but almost all of them involved diabetes. We had the lying about meter readings, and about what I'd eaten because you're not supposed to eat that stuff, tell the coach that you have to stop and eat, etc. Looking back on it I know it was out of love for me, but really, every time we sat down and had "a discussion," teenage me just felt additionally hassled about something that I had to deal with all day every day anyway, so how is talking going to change anything for me?
I can only go from the words you used, but if she says she wants more "control," she is just asserting her independence in the normal way that most kids that age do (I taught middle school for 5 years so trust me, I KNOW) and independence means from you and anything else that also restricts the reasonable realm of what should be a harmless choices - diabetes - which is why you're seeing more deviance when she's away from you at school. I’m sorry, but the next seven-ish years are probably going to be really rough if she was anything like me. She potentially will continue to do this until she moves out of the house if she is an independent person by nature and especially if she starts seeing you as an adversary and primarily a critic.
On the other hand, if she said she wants more "control" over her diabetes specifically, she may need to be introduced to the idea (as my mother also needed) to be okay with and understand that it's very unlikely that she will ever truly have control. And being okay with that makes it okay to have some highs or lows here and there - and that SHE actually can make those kinds of decisions.
Also, there were a total of four type one diabetics in my graduating class (and none for five years in either direction afterwards. Very odd). I was diagnosed at 4, one at 11, one at 14 and one at 15. None of us had what you would call great HBA1Cs during middle/high school. 8-10s. We all had jobs, played sports, went to college, etc. We survived and are doing well. I'm not telling you that because I think control isn't important and 400s all the time are definitely NOT okay, especially when you have the benefit of a pump, but because people really care about their children more than anything and doctors and studies scare the crap out of you because you don't want to see anything happen to your child. It's completely understandable, but just make sure you keep some balance. Those constant talks seriously damaged my relationship with my mother for quite a while - I was a diabetic first and her daughter second, or at least that's how it felt.
As far as messaging to her, I know that it was a harmful tone for me to hear that I “didn't understand.” That's not a message. That's an assumption about her mental capacity (whether it's true or not is another story). Who's convinced by that argument? That felt really condescending, (especially in a few years where you’re supposedly mentally developed enough to understand long term choices like choosing a university to invest $50,000 in, but not diabetes?) Telling her she doesn't understand is only going to make her shut down or roll her eyes at you (am I right?) For me at least, I WAS thinking long term - this is never going to go away, there is no cure, so why bother? Why live under a data microscope of micromanagement and constantly disappoint my parents and my doctors? It wasn’t that I didn’t understand long term things. If I was going to go through all this hassle and still have all these terrible things happen to me sooner or later I might as well pretend to be a normal kid and have some fun now. For me, the future was in question, therefore all I had was the present.
Also a harmful tone: “you’re going to get these complications. Look at all the things that could happen to you. THEY ARE GOING TO HAPPEN TO YOU… unless you act now! And every day. And if you don’t, then all is lost and you will be a burden on your boyfriend, your brother or your parents.” It made this sense of impending doom that a slow death through agonizing complications was unavoidable. I actually went through a phase in my twenties where I didn’t even date anyone seriously because I was absolutely convinced that I was going to die slowly and be a burden on people, and that complications could come seeping up at any moment. I called every birthday party my “surprise birthday party” because I was “surprised” that I made it another year. Very harmful messaging.
When I was 28 I met a friend and we were talking and I had to take a shot or something and I said “I really hate diabetes.” Instead of saying “I’m sorry,” “that sucks,” etc., he said “why?” I told him about what a pain it was and that it was eventually going to kill me. He asked me how I knew that and I said that’s what doctors had told me. He said “yeah? All that bad stuff’s happened?” None of it had. “What has it stopped you from doing?” and the truth was...nothing. He said, “look, people hate all kinds of things about themselves. The way they look, the way they talk or behave, but you can’t be like that. You gotta accept it and love yourself. It’s a part of you.”
He was so cool and matter of fact about it that it really got my gears going in a different way – don’t fight it. Accept that it’s a part of you. That was the message that finally got through to me.