I am so desperate! I have been teary all day. My daughter was dx at age 8 in 2005. Now, 13 and on a pump she has stopped bolusing! For the second endo visit in eight weeks, there are three days in a row with no bolus. I forgot she says. I say you chose! Her A1c is going up and up, now 9.5! What do I do? She can't think past Friday, so saying no driving without an A1c of 7 or no baby without a 5.5 means nothing. Lately, I can't get her to eat. Is this a body image thing? She is 5'8" and 140, slim in my view. What can I do? Have any of you have stories of this adolecent rebellion. Oh, yes, totally a woman, which is crazy with her bgs, but minor in light of not bolusing. Any thoughts would help. Thanks.
Hey there,
I definitely think this may be a body image thing. As a matter of fact it has a name it is called Diabulimia. This is a common condition in young women to avoid weight gain. They omit insulin forcing the body to go into DKA because that makes you lose weight faster. But the thing is you cause bodily harm or even in some cases death.
Now, I do not in anyway want to scare you but, if she is omitting her insulin this is a very serious thing. I know you are upset with her because you don't want anything bad to happen but, maybe she needs some outside help. Maybe she needs to talk with an outsider about what is going on, and why she doesn't want to take insulin. Yelling and showing anger won't help. What does your endo say? Does he think that she has a self image problem or mention anything like that?
I will admit, I've been on a pump for 10 years and I have forgotten to bolus a few times--but not for 3 days in a row. As a teenager, I rebelled against blood tests and would go months without doing them, while pretending with my parents I was completely on top of things (luckily my A1Cs were good, so it was easy to pretend).
As a teen, she's going to do the exact opposite of everything you say, and I'm telling you coming from experience. At 24, I obviously see this was a mistake, but getting her to see that now is going to be tough. If she isn't willing to listen to reason, which she may not be as a stubborn teenager, you may have to force her to see a therapist. There are all sorts of body image issues at that age, and they will only be exacerbated by having diabetes.
Don't feel like it's your fault! You can't force her to see the truth. You can only be her mom and love her. Even though she rebels, she knows you care about her and love her. While she may not realize it now, she will understand later everything you do is because you only want the best for her and want to see her succeed.
Good luck. I'll be thinking about you.
WOW bobolink, this IS scarry. Going without insulin could indeed be deadly.
It seems to me that she needs more supervision in the insulin taking department. You're the parent, don't be afraid to tell her to show you her pump and let you check to make sure she is taking her insulin. If this doesn't work, maybe take her off the pump and put her back on shots and observe and MAKE her take the shots somehow.
I can't speak to the psychological parts of this, but you gotta step in and make sure she taking it.
Honestly, I would try a two-pronged approach. I would definately try to make sure she takes a bolus, but I'm not sure how far I would push it. I wouldn't switch her to MDI, at least she is getting her basal rate now. If you can, you might want to raise her basal (don't make her go low, just try to do a little damage control). I never went through diabulimia, but I did rebel by not testing my sugar levels. I would try to find a counselor that specializes in treating diabetics (they are out there). I'm not sure if diabulimia is an actual DSM-IV TR diagnosis, but eating disorders are serious business, and I wouldn't wait for it to "take care of itself".
I've been a diabetic for 30 years now so I've been through it all. When I went through something similar (mine was in college), there was no name for it yet. It's been all over the newspapers lately though. At the time, my parents put me in Joslin Clinic in Boston for one of their week long programs, to get me back under control. I came home from college, for summer break, and they drove me straight there. At the time I was pissed, but it definitely helped. They even have a on-site therapist to help talk over the emotional side of things. If you're anywhere in the Boston area you may want to check something like this out. Or maybe there's something closer to where you live?
In my opinion, it's definitely a diabulemia issue. I think it's much more common and pervasive than people think. Mostly in girls.
There is hope: I stopped giving insulin injections for the better part of a year when I was 13. I spent a good deal of that time in the hospital. Of course, I did not tell my parents - and this was in time of injections so how could anyone know?
Your daughter is mad. She doesn't want to bolus. She doesn't want to check her BG. She doesn't want to think past what she's doing tonight.
I can't tell you what finally made me stop (or would it be start?). I can tell you, that at coming up on age 35, living with type 1 for 32 years, having two kids, a husband, and a job... I try my hardest to be the "good" patient. But I'm not. I still forget to bolus (sometimes - not daily, maybe not even weekly - but it happens). I still will choose not to go downstairs to check my BG before bed if I don't have a meter on my nightstand. It's easy to fall into bad habits and really, really hard to get and stay into good habits. I'm also one of those lucky ones who seems not to be prone to complications - still complication free after 32 years.
I'd suggest some counseling for your daughter. And probably for you. This is going to be a long few years of her becoming an adult who has to care for herself. She has to learn to become that adult, and you are responsible for caring for her, but we all know you can't be with her 24x7. This is not a failure on your part. It is not a failure on your daughters. It is a little girl, becoming an independant woman who has WAY more to deal with that the average 13 year old.
Also, keep in mind that 9.5 is not "that" bad at age 13. Believe me it could be FAR worse (I was up in the 13s for a good part of that year). Hopefully you can work with her endo team to come up with a way to keep her safe through this stage. She'll come around, I bet... but it will take time and a lot of heartache to get there. It might be good to try having her endo team talk to her (not you) during her appointments. Maybe even give her time alone with them. Talk to them about it and see what they recommend.
Also - I've heard of some pediatric endos threatening to take away the pump if kids don't use them correctly (i.e. like your daughter). My response: if she won't press a button to bolus, what makes them think she's going to give an injection? She won't and she won't have basal rates going in all the time.
I'm hoping this is helpful and gives you some light at the end of the tunnel that you will both come out on the other side of this ordeal.
Bobollink,
I have to tell you that I respect the dedication and drive you have for helping your daughter. This is a rough time for her and she'll need all the help and support she can get.
I can tell you from experience that she does suffer from Diabulemia. It's partly a denial phase and a self image phase probably. I wasn't diagnosed with it, but know that I did have it for 3 years. Hopefully your daughter will come out of it pretty soon. What happens is that she probably is questioning any seriousness in what she's doing. I know that when I was going through it I thought I could survive anything, even though I had been to the hospital more often than not with issues (hopefully this won't be happening to your daughter) she is still getting her basal insulin correct?
For me it was a little different because my diabulemia started soon after I was diagnosed. I had lost a BUNCH of weight and as soon as I was put on insulin, I gained so much of it back, and quickly. I was 16 at the time so being thin and gorgeous was all I cared about. I had had weight problems in the past so I saw this as.. Wow finally a way that works to lose weight (DEFINITELY not the healthy approach to weight loss.)
I've been diagnosed with severe DKA 5 times since my diagnoses in 2004 and now, at the age of 22 regret it more than anything I've ever done. I remember going to my endo once and he telling my mom that as long as I kept giving myself my Lantus everynight that it would keep me from entering DKA again until I figured things out psychologically. In a way, I really respected that doctor because he gave me control of my situation.
As I mentioned before, she is testing her diabetes and her strength. I've often thought, for people who have always taken their insulin, always tested their BG and never had any issues, how do they know what will happen if they stop it completely? I know this isn't the way to think.. but I've been through it and I KNOW what happens but do they? I really hope noone sees me the wrong way by saying this, but it's just a thought I've had in the past. Also, most hyperglycemia symptoms aren't instant and take some time to appear so maybe she's trying to see how long it will take?
All I can say is, keep an eye on her, and hope for the best.. Take Kristen's advice though, look into a rehabilitation program for T1 diabetics. I know when I was diabulemic, I wished countless times that someone would take me away and "Fix" my problem for me. It took me a while to overcome my selfimage issues but eventually I did and now.. I would never turn back from being healthy.
I hope I didn't scare you Bobollink, I am just sharing with you what I went through and hope your situation will be different.
Best of luck,
Andrée
Thank you to all the posters. I am much reassured that I am doing the right things. My daughter has an appointment with a therapist who was dx'd at 13. I have to pull her dragging and screaming, but after these responses I am even more convinced that it's what the dr. ordered. I propose a therapist as an automatic member of the diabetes management team. There are so many phases to negotiate: diagnosis, honeymoon, school, puberty, independence, etc. Thanks again to all those who took a minute (or more!) to respond. This community rocks!
Bobolink (aka anonlurkermom!)
Hi again. After receiving all your great comments, I started a blog. I hope you will visit and comment. adolescentangsttype1.blogspot.com. anonlurkermom aka bobolink.
here i have made a fool-proof plan. it cannot go wrong because as i am your daughters age, if i didnt want to do something, i would make up excuses like these.
set alarms on heer pump(i know that if its minimed, it has alarm clocks.) do it for times when she would be eating, like lunch. if she misses a bolus or two from snacks, its better than no bolus ever and its only a small snack(hopefully)
now, if she says: it didnt go off!! then go look at it and say : but it is turned on, so of course it went off.
if she says: i didnt hear it!! then tell her to switch the alarm from beep to vibrate. if she still says she didnt know it went off, give her an example of when an alarm might go off and she hears it(example: low battery)
if she says: i forgot what the alarm meant!! you: tape a paper saying what it means to the back and do it well so it cant "fall" off.
if that still doesnt work, try scaring her by telling her how deadly it could be. if she says it wont be deadly for her, tell her she will die if she continues.
welcome to the mind of a 14 year old girl(of 3 days) that is trying to avoid something!
Hey, as far as knowing if the pump alarm went off: if you upload the pump, you can also look on one of the graphs and it shows you when the alarms went off, and for how long. Technology is pretty much teen-proof lol
You could always go the total parent route and keep her with you for a few days. Even a week. She'll snap into place. Bring her into work, totally emberass her!! If I were you, I'd tell all my coworkes "My daughter will be coming to work with me for the week because she can't seem to handle diabetes on her own," even in front of her. Make sure you watch her bolus, watch it count down, and don't let her have food until you do. Baby her. She'll straighten up and realize she wants the responsibility of taking care of this on her own. You kind of have to use revers phsycology on teens sometimes :)