From Walnut Creek, California, USA:
My 14 year old daughter has had diabetes since the age of two. At age five, she began testing herself; at age six, she began calculating her carbohydrates and figuring out how much insulin to draw; at age ten, she went on an insulin pump. All through these years (we) and she managed her diabetes without any real difficulty and we were all quite proud of her for staying on top of things.
About two years ago, things started to turn around. She'd forget to test, sometimes all day, and forget to bolus, sometimes all day. We'd gently remind her and she'd still forget or put it aside for later.
She has been going to the same school with the same kids for about nine years. All her teachers and staff know about her diabetes and have actively looked after her. This past year, the teacher has not been so conscientious. The teacher keeps a big bucket of candy in the class room for the kids to snack on all day long. She keeps other sweets and goodies to which the kids help themselves. I have never before had to ask a teacher to make a special consideration for my daughter's benefit, but finally had to say something when, on a daily basis, my daughter was having multiple 400+ mg/dl [over 22.2 mmol/L] blood sugars during the day.
My daughter used to exercise every day. Now, she comes home and heads upstairs to watch t.v., sit in front of the computer, or listen to her iPod while bingeing on food. She hides the evidence under the cushions of the sofa. Then, she forgets to bolus for all this food, and or underestimates and does not bolus enough. I have tried to control this by getting her to agree to some rules about good eating habits and not watching so much t.v., to no avail. I am now canceling cable t.v.
When we have tried backing off her and, at her request, stopped asking her to test/asking her about her numbers to see if she could do it herself, it was a disaster. When we calmly work with her to test and bolus, she complains that we are on her and then she doesn't bolus at all. We have tried having consequences. The loss of privileges and did not work. It caused a lot of tears and anger. When we have tried the reward system, she feels like a failure and, again, there are a lot of tears and anger.
We saw a therapist today and tried to work out a plan together. My daughter has promised not to lie about her numbers and to try to remember to test and bolus, but I feel like we will have frustrating results because the real problem is not being addressed, which is her denial and refusal to accept this disease.
We are going away to Washington, D.C. next week on a school sponsored trip. I am going, much to her dismay, but because she has not be able to demonstrate that she can take care of herself. She has told me, angrily, that she does not want me to be "on" her while we are on the week-long trip. I told her that every night she must bring me her meter and her pump and that if she demonstrates that she is testing and bolusing appropriately, I will stay away from her. But if not, I will be "on" her. I also told her that if her numbers really get out of hand we will come home. The therapist told me that I should not have said that. But, I feel helpless and frustrated because, based on the experience of another trip we took, she will forget to take care of herself once again. I know this is affecting her self esteem and stressing her out as well as stressing me and my husband out. We don't know what else to try. We bring this up at every visit to the endocrinologist's office, but we talk about how our daughter must try to do a better job and that's it. Meanwhile, her A1c is creeping upwards. It used to hover around 7.0, but now is in the high 8s and I see it going higher every visit. She cries when she sees her A1c creeping up and her body weight going up. Her self esteem is crashing and I think she is struggling to hang on.
I don't know what to do any more. I need to know if there is a camp, or a local counselor, or a resource of some sort that can help us work with her to accept this disease and manage it appropriately. We realize that there are going to be high numbers. That isn't what is frustrating us. What frustrates us is her inability to take care of herself the few hours when we are not with her. We help her with her set changes when she is tired, I have even tried testing/bolusing her so she could take a break, but I cannot be with her around the clock.
Please don't recommend a diabetes camp. So far, at camp, the other kids have taught her how to manipulate her meter to get a good reading and how to lose weight but running high numbers. She went to Bearskin Meadows for about five years in a row only top return home with horrendously high numbers and no new knowledge on how to self manage. Then, she went on a diabetes cruise camp--more high numbers and no education at all, and a teen camp in Nevada. The only thing she learns at these camps are bad habits. Plus, she does not want to associate with other diabetic teens. I told her I wanted to start a diabetic teen support group and she told me if I did, she would not come. She wants to pretend she does not have diabetes. I am at my wits end!
The most important thing you can do, you have already begun. You met one time with a counselor. You may need to attend counseling, as a family, on a weekly basis for about 10 to 12 weeks before you see significant changes.
It is very common for children to be incredibly responsible for their daily diabetes care. It is similarly very common for teenagers to be unable to show the same level of responsibility that they were capable of when they were younger. There are numerous cognitive, emotional, and physiologic reasons for this. Getting angry or threatening a teenager will not work. Your long letter suggests that things have become so stressful in your home that you and your daughter are on opposite sides instead of the two of you working together to handle the exhausting and frustrating chronic disease that is diabetes. That is why counseling is the most important thing for your family to participate in right now.
I would also recommend you talk at length with your diabetes team. It seems that your daughter should not be on a pump right now if she is not bolusing and is not checking blood sugars. She may need to return to injections for the time being, and it may be necessary for you and your husband to be the ones giving her the injections and checking her blood sugars so that she is safe.
[Editor's comment: You may also want to consider having your family attend our annual Friends for Life Conference. The teens participate in many activities where they are responsible for their own testing and dosing. There are adults to supervise and see that this is done properly. They are encouraged to test frequently and honestly.
If, after counseling, you still find that you need additional help, you may want to consider sending your daughter to the Cumberland Hospital for Children and Adolescents, which has a program for children with diabetes. BH]
Original posting 14 Apr 2006
Posted to Behavior
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Last Updated: Tuesday April 06, 2010 15:10:08
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