My wife and I are flabbergasted after a conversation with our 14 year old T1. She has impressed us in so many ways with how she's handled diabetes since her diagnosis 16 months ago.
Tonight I asked to see her glucometers and she instantly started crying.
We've asked her day in and day out what her number was and trusted her to give us an honest answer. Tonight we found out that she was lying. She hadn't measured her BG in 6 days! She wasn't lying because she is a bad kid but because she is scared and was in denial about her disease.
We forced her to do a BG tonight in front of us and she was at 506! Luckily she had no keytones but it scared us to death.
She absolutely refuses to engage with support groups online or in town. I think she would benefit from talking to others that are dealing with the same problems but can't find a way to get her engaged.
If you're someone dealing with T1 and have some suggestions, we're all ears. We will now check all of her BG's personally but want to do so in a way that doesn't alienate her.
Frank, I my self am 14 years old but i have been dealing with this disease since I was 3 1/2 years old. For about 11 years now. I at one point want thought that time when I did not want to do thing that I would do at home or something and to this day i dont do anything that has to do with diabetes by my self and if I am around people that I dont kown than I want do it. But last year I meet a teen with diabetes her name is taylor. She told me that I cant always to things that have to do with diabetes not in front of people. So now that I will be 15 on 7-11-2010 I am getting to the point were when I go shopping I dont have to wear a jacket so people dont see my pump site. But I am getting used to the idea that when i go out shopping that I dont have to wear a jacket or something so people dont see my pump site.
Frank, u can ask me anything u would like and maybe ever tell her if she does not check than she cant go out with her friend's and do other thing. I kown how it is too be a 14 year old girl and not fit in. I will always be here. take care and hope everything works out ok.
Is she open to attending a summer camp on diabetes. It would really give her the chance to talk to kids her age about diabetes. They do lots of cool stuff and could help her!! Just an idea.
I understand your frustration, and know where your daughter is coming from. I am 30 years old, dx at age 2. I have had periods of good checks, and periods of no checks. From about my junior year in high school until about 3-4 years ago I would sometimes not check for days and sometimes weeks. I would have a spurt now and again where I would check regularly, but it didn't last long.
What finally kicked me into doing the right thing was when I had problems with my retina in 2007. My ophthalmologist performed 2 laser treatments, an avastin injection, and finally a full vitrectomy on both eyes throughout that year. It was my wakeup call that my eye sight and other orgens are more important than not caring about how I am treating myself.
This is a phase in growing up and adapting to life with diabeties. The best thing you can do is be supportive, help her meet other diabetics thru JDRF events (JDRF walk for a cure), summer camps, and any local support groups that maybe in your area. She should be shown what can happen with poor control, but at the same time you need to be supportive, but not overbearing on having her show you the numbers. I use to be able to cheat a BG when my parents demanded I show them readings like every few days. I don't know if your meter has a link cable, and software where you can do similar downloads to your computer and print outs like the doctor's office. This would allow you to do better data analysis.
would also recommend setting short term and long term goals. Short term goals could be showing 2-3 BG for the next 2 weeks and she gets a small prize; dinner at her favorite restaurant, movie night with friends. Long term goals could be 3-5 test a day average for 2-3 months with a bigger prize $100, or a new cell phone.
Great points Jonathon. I'm sharing your note with Grayson now. I think she got a pretty good wake up call but we're going to be more active (but supportive) with her BG monitoring.
On a positive note, I'm impressed she's even talking to you about it. I was terrified of the implications of D when I was a teenager. With puberty, I couldn't get my numbers into control. I never opened up to my Mom b/c I was too scared and didn't even know how to bring it up. It was like the elephant in the room for both of us that we never mentioned... Hopefully, this is an opportunity to have open discussions with her. Does she know you're scared too and overwhelmed? What if both of you made goals? What would she like you to do to support her? How many times checking in per week would be a comfortable level for her?
Hopefully this is a great opportunity to make changes before she's off to college or on her own! It can take months or even a couple of years to really make daily changes that stick, so you have the chance to get in a better rhythm before she leaves home.
When I was diagnosed at 12 I went through similar things and was completely in denial about diabetes. I was also adamant that I would not attend summer camp, however, I was not forced but strongly encouraged to go. I cried all the way there not wanting to be left at camp and cried all the way home at the end of the week not wanting to leave. Diabetes camp changed my whole perspective and without camp I don't know where I would be. You should really, really push your daughter to go. I'm almost 20 and leaving tomorrow morning to go back to diabetes camp as a counselor!
I agree with Jonathon too. I was dx at age 2 as well and have the same hills and valleys of BG checking.
The teen years are really, really hard. I'm sure your daughter knows what it right (and I'm sure she has guilt about not being that "star" patient), but really just doesn't want that extra layer of responsibility that her friends don't have. She has to come to terms with chronic, and it is going to take time. This isn't to say she can just keep going with this bad behavior, but she should know that she is not alone. A lot of people struggle with this (see here: http://www.diabetesmine.com/2010/02/teens-with-diabete.html). Be sure to read the comments too... you & your daughter will both see: you are not alone.
I hope you can keep the communication channel open, and both work to be more open with what is working and what isn't. Don't be afraid to ask for help.
What's the easiest response to any challenge? Denial.
This isn't something that's unique to teens (or adults) with diabetes. Everyone does it. That's why people sometimes stay in bad relationships, skip their vitamins or don't pass up the tempting dessert. The scary thing with girls like Grayson is that diabetes is something that cannot be denied. Diabetes constantly reminds you of the consequences of denial with ketones, high bg's and feeling sluggish from the high sugar. The spectre of long term complications looms large as well. It's a lot for ANYONE to tkae let alone a fragile 14 year old who wants nothing more than to fit in with her friends.
It's tough for a parent to watch. And I'm happy to see you're not just standing by on the sidelines. You are giving her the support and understanding she needs. Keep listening to her and keep being there (actively). It's really hard.
My wife and I are going through similar challenges with our 14 year old. But there's a lot of good advice on juvenation that will hopefully help you navigate through these struggles. There's some decent stuff that's starting to pop up online to help. Here's a good perspective from Moira who has already gone through what we're going through now on the DiabetesMine blog: Teens with Diabetes: Freedom is Their Secret Drug . You may want to also check out my Daddybetes blog - I've got several years of posts that have chronicled our experiences with T1.
That sounds exactly like me. I haven't checked my BG in a while. It's not because I don't want to either. It's because I guess I think it will go away and I can live a normal life. I know I can't but I mean there is always going to be a little part of me saying yes you can. I've been getting a little better. Some days are worse than other days. I mean it's scary because I knew a guy that didn't take care of himself and he ended up dying and having to go through dyalisis. I mean you would think that that would scare me enough into taking care of myself but evedentily it didn't. Everyday my parents struggle with me, trying to get me to check it and no lie to them. Luckily I haven't had any keytones or anything yet...but my sugars are sky high. I mean most of the time they are between 3 to the high 5 hundreds. I'm trying really hard to beat this habit, but I've been doing like this for a while now, that it's even harder.
Brittany... Get a hold of your diabetes immediately. It just isn't worth it. I hope Grayson has a long, wonderful, and healthy life and that's what we've tried to show her, that this is the path to that health and happiness.
I had aortic valve replacement surgery when I was 33. I went through a lot of the "why me" syndrome. But control what you can control. Use this as the wake up call you need to get your BG in check.
I have had this for only 13 months i know how she feels after so long you get tired of everything you just want to be normal so even though you know that you should be checking your blood sugers and taking the insulin, you just do what you jhave to do to get by.... Let me tell you something stay on her there has to be some one there to ask " have you taken checked you BS today?" What was it? You probably should take it again.... I am 21 and other than my newly wed husband who knows nothing about this and what i am going through ... I have no one to keep me on track and i am failing my self i know this and still do nothing about it.... Please just lift her up and keep on her case ... She might hate you now but in the long run when she is healthy she will Love you :) If she needs someone to talk to tell her she can talk to me we are about in the same boat ....
Also i really think it diffrent from the ones who has had it since they were little we are diffrent our minds are diffrent ..... We remeber what it feels like not always be mnind ful of what your blood suger is or how much insulin we should take and we dont really feel like eating the way we should ... Seriously if she needs to talk to some one who hasn't had this their whole life i am here dor her :)
When I was in high school, all my friends knew I had T1, I never tried to hide it, and whenever we got to this section in Health classes, I always offered to talk about my personal experience, or even do demonstrations with stuff. I went to a small rural school, so my experience was very different from others, but having friends to help keep you in check helped me a lot. I had a couple close friends who would walk to the nurses with me at lunch and "count down" to see what I was. They didn't understand the finer details, but they were all so curious about my pump and blood test, they just liked to see how stuff worked. I never wanted to go to any kind of support groups or anything when I was younger. I just wasn't interested. It seemed like a waste of time, I had other things to do. I was also under the impression that we would sit in a circle and cry about how diabetes was ruining our lives. My teenage brain was a tad dramatic I think... I obviously no longer feel that way and probably would have benefited a great deal, but hind site is always 20/20. I was involved in some kind of school activity all year long, a combination of music/sports/academics. There were plenty of times that I found my diabetes totally annoying, and I certainly had bad days, couple bad weeks too, still do, but it never stopped me from doing anything. Maybe swim team, but since my school didn't have a pool, I didn't have to option anyways.
Having your daughter show one or two of her close friends how to do a blood test, show them how to read food labels, stuff like that, might really help. My friends found it cool for lack of a better word. We didn't talk about all the scary stuff... but having them be interested in watching me do a blood test and seeing the result helped me be more inclined to do them.
As I got older, my friends and I would joke about how our bodies failed us. A couple of my friends had asthma and carried inhalers, one was deathly allergic to peanut butter, one had a thyroid problem, all of us were blind as bats without our contacts, the list goes on. They may have not had diabetes, and some issues were certainly easier to live with than others, but the fact that we all had problems helped me not feel so isolated.
I wish you and your daughter the best of luck as you figure this out.
I second what lots of people have said. I was diagnosed about a month after your daughter, when I was 18, so I don't have parents around to ask to see my glucometer. Luckily I haven't had burnout for more than about a day. Meeting other people with T1 has been so helpful for me - even on Junvenation. Being able to know that whatever the test result is, I can tell a friend and they'll actually know what 56 or 238 means, has made it way less isolating to test all the time. Camp and groups are also great. Please find some way she can talk to others with T1, if there's any way.
Keep in mind, as you look at her BG results, that there are no good or bad ones, just information. Focus on supporting her in testing, and don't worry too much about what the numbers are until she's back on her feet with the testing. I babysit for a five year old with type 1, and anytime she doesn't want to test but does it anyway, she asks if she's high or low and I tell her she's great and give her a high five. We still treat highs and lows, but try really hard to stay positive.
well I am only a little bit younger than your daughter and I find that I am very open about my T1 to both of my parents. I believe that Although it is very rough and have only had it for about 6 months now I really do share a lot with my mom about it. I believe this is so because when I was diagnosed with it I was in the hospital b/c i had gone into DKA (and NONE of my family knew what that even was) for a while my mom was sitting in the char next to me and she cried. And i didn't want to cry but I shed a tear or two. We were very surprised that I got T1 because at that point we didn't know it ran in our family. So we were there in the hospital and we were i guess grieving the news. I think that she will become more open in time because that's what people need to grieve and heal. She is probably still in shock and that may have been why she started crying when you asked her about her sugars. I think I might still be in shock but I know that everything will be easier in time and I just have to remember that I have diabetes and it doesn't have me. I would tell your daughter that. Also, Maybe if she knew that you are feeling those same feelings (which I imagine you are) then she would be more open. Everyone needs help sometimes and maybe this is one of those times for her. But I'm very happy to hear that she is coming around a little bit. And of course the more people she meets and knows with T1, the more she will accept that se has it and may very well become more open about it. I hope the best for the both of you!
like many others i have been living mi life withtype 1 diabetes for tha past 13 years. i was 3 when i was diagnosed. its tha only life ive really ever known..but at tha same time, i try not ta let it make meh different from other "normal" addolecents. miself as well as everyone else will be tha first ta say how frustrating diabetes is. i have came a long way over tha past few years. mi freshman year though everyone knew i was a type 1..i still tried ta hide mi diabetes. and ta be honest with you i went through a few month period where i rarley checked mi Blood Sugars. i wanted ta feel "normal". that eneded real quick though i ended up in tha PICU for a few days than got transfered ta a normal hospital, before getting ta go home. mi Blood Sugars were extremly high. and ta think i knew i coulda prevented that by checking them.
when i was younger before i got really sick i used ta go ta tha hospital and talk ta newly diagnosed type 1 addolesents, and mi mom would talk ta their familys. i found this very benefitial, because it gave tha addolesent/infant a friend who has been where they are. so maybe your daughter simply needs a friend that has been in her shoes.
i am now at tha end of mi junior year of high school, and tha only reason i made it this far as well as i did is a very presistant mother, endo, nutritionist, and a good group of supporting friends. if she has a close friend that she can tell anything too, try ta get her ta talk ta that person about it, try and get her ta open up a bit. that way anytime she needs a friend ta talk ta about her diabetes, she has someone she trusts ta listen and na judge. i wish i could be of more help, but this is all i can think of that may work. i hope you get some use out of this.
if your daughter uses AIM or anything like that and would like a friend who understands(even if she dont wanna talk about her diabetes, im open ta listening and trying ta help) i am open just send meh a message and i will give you mi screen name.
I am going thru the same thing with my son now. He is 15 and was diagnosed 14 months ago. I guess I was not as trusting with my son and made him check his BG in front of us. After awhile we started to give him some leaway - letting him handle his infusion with his pump, check his sugars at school etc. I would track his numbers on the software. About a month ago his numbers started to go high. I asked all the questions - what did you eat - nothing - is your infusion in correctly - yes, how are things going at school - fine. We tried all the things to avoid confrontation or alienation and it didn't matter.
We found empty cookie packages, pop tarts, crackers, candy bars etc. under his bed, we found then in the basement, and other places where we normally do not go or look. He was in the high 400's many times. We would ask him his numbers when he would check his BG in front of us and he would say oh, its 151 when it was 351 or something like that. That was starting to happen alot. We also found he would not bolusing after eating which drove us crazy because he just had to push some buttons and he was not doing that.
I would like to say at this point things are good - but he is 15 and sometimes its a battle.
I have been to many JDRF Retreats and talked to other parents of teens and this is NOT unusual for the age and it does not matter if they were diagnosed last year or 10 years ago.
So, they all do it but it doesn't help sometimes to know that.
What I have started to do is go back to square one - every night before bed I get his meter and pump and download the info. I can find out his BG numbers as well as his bolus amounts.
My son also refuses to get on Juvenation to talk to other teens. I don't know why but I know I can't force him to talk to people if he doesn't want to and i know I could force it but he would do it for awhile and then stop. I wish I knew why he doesn't want to do it.
Neither of our kids are bad kids - they are just tired of having limitations put on them by diabetes. Both of our kids knew what it was like to eat anything they wanted and now we watch - as parents we recommend - maybe eat something that is not loaded with sugar like a candy bar and eat something healthy like yogurt. Sometimes they want a candy bar. I think the lack of bolus is just a small protest against the disease. They know they can adjust later - its always later. For them its a matter of numbers - they think "I can fool my parents so many times and then get caught and when that happens I will handle it then".
The one thing I learned from the classes and seminars and talking to other parents is that as much as we want them to have responsibility for T1 most will not. They will do exactly what our kids are doing. The adivise I got from the pro's. Trust but verify.