My questions is for any one that has experienced what we have been told is Preteen Rebellion. How long did it last for your child? Does anyone have any tips on dealing with it?
Here is our story so you can understand more of why I am asking.
My daughter was diagnosed Aug 2007 at the age of 9. She did really good the first 2 years. No hospital stay after the first one when she was Dx and even then she wasn't in DKA. We just took her to our family doctor because she was losing weight really fast, thirsty, had bad headaches, etc.... She was admitted in to the hospital that day and by the third day she was giving her own shots. Then October 2009 she had to be admitted into the hospital for DKA and decided that she wasn't going to do any of it any more. Blood Checks, Carb Counting (she is still on a constant carb diet) or Insulin Injections. Here we are 6 months later and her A1C is still 13.5 (It was 12.3 in November). She gets her friends to sneak her snacks to school, steals snacks at home and then lies about eating them. She has even gone as far as to eat the Glucose Tablets that we keep in her kit. She will tell us and the school nurse that she did insulin when she didn't.
I have read every thing that I can find online and have tried everything that I have read and nothing has worked yet. We have tried rewards going as far as money and extra snacks (with insulin ofcourse). We have also tried punishments like taking her cell and nothing in either direction seems to work. So I'm up for any suggestions.
This sounds very challenging and my heart goes out to you. My daughter is 10 (Dx at 7) and currently doing pretty well with testing, pumping and not sneaking food yet (that I know of) but I’m mentally preparing myself for some of these behaviours to manifest as she gets older. From what I’ve read on this subject (Children with Diabetes - ask a Doctor, this website, and others), it would be appropriate for you to take over all diabetes responsibility from your daughter for awhile. In other words, do all testing, measuring of food, and all shots or arrange for another competent adult to do this if/while you’re at work. It’s clear from what you write that she is unable to handle the responsibilities that come with diabetes right now and is resenting everything that comes along with the disease. Having you take over might ease this burden from her for awhile and give her time to get used to having diabetes again. As far as the extra food goes, I might try to make a deal with her - that she can eat anything she wants for a while (no questions asked, no arguments from you) so long as she takes the appropriate insulin. It sounds like punishment is not working and I think rewarding with food is a bad idea but a larger reward based on a longer term goal - like a lowered A1c - might be a good incentive.
I would also think about counselling, both for your daughter and as a family, as it might help you guys deal with some of the anger, frustration, worry, guilt, etc. Does your daughter have any friends with Type 1 that she could talk to? Maybe you can get in touch with someone a little older who has a good handle on life with diabetes - perhaps a teenager who works at a diabetes camp as a counsellor.
Best wishes.
My son was diagnosed 18 months ago at age 8, and so far is okay - but I have been reading a lot to prepare for this - Karen basically just said everything I was thinking - but my one question goes to her suggestion to let her eat anything - is there a reason your daughter is on a constant carb diet? That seems like a restriction that isn’t necessary - especially if you want to enforce other things like insulin and blood sugar checks. Or maybe I don’t understand what a constant carb diet is? We count carbs, but it’s definitely not the same every meal or every day.
Pumping is what changed everything for my son. He started to get really upset about shots and I started to just point out that if he had a pump he wouldn’t need the shots - not to pressure him, but to let him know he had choices and other alternatives. We finally went to a conference where he tried two on (I told him he didn’t have to get one, but he agreed to try them), and immediately decided on the Omnipod. It has changed our entire diabetes life. I’m not pretending we still won’t deal with rebellion or anything, but his attitude was immediately changed when he started pumping.
Karen, Thank you for the reply. I don’t agree with rewarding with food either but to be honest I’m willing to try anything at this point. I haven’t taken over all of her care but have changed a few things. Now instead of asking her to do her BS check we do that together. Since the Endo just went up on her Lantus I’m also doing checks at night to make sure she doesn’t drop low. Thank goodness I don’t work outside of our home so I can pretty much work around her schedule. I’m also looking into counseling. I’m hoping that something will work. As far as her having friends with T1. She has been getting on the jdrf website and has just started writing a few pen-pals on there. Where we live is really small and she is the first T1 child that the school here has ever had. Thank goodness the nurse is great and we pretty much stay on the phone trying to find a solution to the daily drama that arises. I really do appreciate you taking time to reply.
Natasha, Thank you for your reply as well. Let’s see. The Constant Carb diet that we follow is a set amount of carbs for each meal each day and then there are set snacks too. For instance her carbs right now are 55-60 for breakfast, 60-65 for lunch and 65-70 for Supper. The Insulin is also set. She does 8 units of Novolog for each meal right now and then 28 units of Lantus at bed time. She then does a correction according to a sliding scale before each meal and her snacks. So for example if her BS is 256 before lunch she does her 8 units with a correction of 2 because 250-300 is 2 units she ends up doing a total of 10 units before that meal.
The reason that her Endo is doing this is because she wants her BS to be controlled before she puts her on the pump. The way it was explained to us is that they want us to be able to control it without the pump first because the pump can fail or other problems can occur. Also her Endo is over 2 hours away and they want us to attend a ratio class before they will even consider the pump. With my husband’s schedule we haven’t been able to attend that class yet. Not that it would matter because they won’t consider the pump any ways with her A1C being so high. So as soon as we can get her A1C down we will get her on the pump which from what I hear will make all of our lives easier. She is actually scared of getting the pump which is why I set her with the pen-pal site on jdrf. Thank you again and I hope that I explained all of this ok. So much that I’m hoping that I remembered every thing.
The only thing I would add to what the others have said, and after reading about the carb diet you’re still on, is I would strongly suggest you go to that ratio class asap. My son was dx last July and we’ve gone through all the classes and is now just waiting to get the pump. Once we went through the ratio class it was so much more flexible regardless of the bg’s being uncontrolled. You’re able to determine what her ratio is for insulin unit to carb intake. For instance my son right now at breakfast needs 18g of carbs for each unit of insulin, so it’s up to him what he wants or doesn’t want to eat and I make the measurement based on his ratio. As insulin doses change so does his ratio. That would give her more flexibility with her meals.
That seems ironic to me. Your endo is taking away the option of something that might work for your child because something else isn’t working for her. Personally, I fail to see the logic in that at all. We were told at dx that we would have to be good at shots and that it would be at least 6 months before we could get a pump. (We were all begging for one right away.) However, the endo’s CDE is a pump-advocate, and we were on a pump within 6 weeks. (Two people in the same office not even on the same page.) It sounds like you might live in the country, but I’d be tempted to look for another endo or another D resource.
I just read the other day that while most people think that the teens are the worst years, children fight for the most independence at 11, which is probably your daughter’s age, and are actually more compliant later. (Not that this helps you a lot right now.)
Thank Everyone for your replies. We are going to get to the ratio class as soon as possible. With everything that I have been reading over the last couple of days the pump will change her life so much. I do have a question for you Roxanne. You say you quit wearing the pump because of the teasing. Did you ever go back to it? For some reason she is scared to death of getting the pump. After her last appt. she even asked me “So mom as long as my A1C is not good I can’t get the pump?” It wasn’t a question like she needs to fix it but more like she can keep her A1C up and avoid it all together. I told her that the pump was her choice when her A1C comes down and I’m not going to force her to do because I feel like she is being forced to do a lot right now. I want the pump for her and we are hoping we can figure out where this fear comes from and fix but until we do I just don’t think I shouldn’t push it on her. Am I wrong for this?
You are getting some great information here! I know that when we broached the subject of a pump with my daughter she had very mixed feelings. We spent a good 6 months talking about it, looking up information on the internet, discussing it with her diabetes team, looking at photos - we ordered a package of information from the different pump companies and eventually had a salesperson come out to talk to us which was a big deal as we are 3 hours from an airport. We asked for and received sample infusion sets to try out on eachother and wear around for a day to see what it was like. I knew that she’d have to be thoroughly bought in to the idea in order for it to be a success. There comes an age when you can’t force something like a pump on a child as Roxanne writes above. She has to buy in for things to be successful.
The benefits - we did a pros and cons list - definately outweighed the negatives in my daughter’s mind which meant she was ready. Of course compliance, even enthusiasim, is essential given that the risks of hyperglycemia, ketones and even DKA are significantly higher for those on the pump. It’s definately more ‘work’ than shots were - more analysis, more fiddling, more parts to deal with but the flexibility it allows is amazing - much more subtle to deliver insulin, eating when a person wants rather than on a schedule, sleeping in on weekends, the ability to dial up or down the basal, easy corrections. All things that I’m sure your daughter will appreciate when she can spend some time looking at this stuff with a more open mind. Maybe you could attend a pump info seminar, or a meeting of young people with diabetes who pump - in a larger centre. The pen pal thing will be great I’d think.
You are doing a great job of listening to your daughter and supporting her - things will get better!
It seems that one more restriction/rule is just going to drive your daughter over the edge to me. I can’t believe your endo’s perspective on this - is there any chance of finding another one? Basically, if she isn’t hungry, she still has to eat - and if she’s really hungry, she can’t have more. That would make me go crazy pretty quickly I think. How do you allow birthday parties and going out to eat? Does she feel left out and different at these events because she can’t have what others have, or what she wants? Maybe not - but I just know my son’s birthday parties, school parties, trips out to a restaurant etc. almost always lead to in-between meal meals, meals over 100 carbs, and random additions.
Have you read Think Like a Pancreas? If you read it, you can start to do it all by yourself - I don’t think you have to go to a ratios class to understand how to adjust ratios and how to carb count for more flexibility. We never ask my endo’s permission to change any rates. I know that’s probably not what I should be advising on here - you should always consult your doc etc., but I change my son’s ratios and basal rates at least monthly and sometimes more. He is growing and active and I’m not sure, even after 18 months if we’ve finished the honeymoon . . .
My son adamantly opposed the pump for his first 8 months - and we didn’t push it at all. I only mentioned it as another option when he would complain about shots, to give him a little bit of a feeling of not being confined to shots. When we went to the conference, he agreed to try them. I told him I didn’t care if he went on one or not - I really didn’t. I knew there would be good and both to both MDI and a pump. I wasn’t even sure if I was up to starting one. I never expressed an opinion - and when he tried the Animus and the Omnipod - I expressed no opinion there either. I also still saw that there would be good and bad aspects to both. I wanted him to feel just a little control when this disease must make him feel so out of control. He picked the Omnipod, and the change it has made to what he can eat, when he can eat, and how he feels about diabetes has been life-altering.
I don’t mind the extra work if it will help her. She was so outgoing before her Dx and now she seems to want to hide from the world. She loves all sports and we tried the Basketball thing but the first game she got shaky in the middle of and had to be pulled out to check her blood. She hated it so shortly after when we moved and she started another school she opted out on playing basketball. At her new school her friends do seem to be more supportive with asking questions and not teasing as much which is good. Only if they would not bring her candy to school we would be ok. I can’t say that all that is bad either though because for Easter the class presented her with a Sugar Free Easter Basket. So I think the more they are learning about the less they are going to help her out by sneaking her the candy. As a matter of fact this next week the counselor and nurse are putting on a Diabetes day and Destiny will be the star of the show. She seems really excited about being able to explain everything to them. I have an 8 year old daughter that is not diabetic and Destiny is always teaching her so we thought it might be good if she could teach the kids in her class for a day. Like I said before I am willing to try anything. Also I agree about getting lots of good advice on here. Feels good to have people that know how I feel and also people that live with T1 and can speak up to tell me what she might not be able to tell me as of now. You know it killed me the other day when she told me that before Diabetes I was her best friend and now it’s all about Diabetes. How does a mom deal with those words?
Oh yes it is. We actually sold our house and moved here because it was a really small school and I knew it would be more 1 on one contact with her. The nurse has turned out to be one of my best friends here lately. Not that she knows anymore than I do of what to do with Destiny’s not wanting to do it anymore but she is as willing as I am to try anything. She was even sick at home the other day and called the school to talk to Destiny. When she found out that Destiny was high she called me from home to see what we could do and was going to get up and go to the school to help. I told her that I was already on my way so I just kept her posted over the phone. She doesn’t claim to know any more than we do but she is willing to learn and that is what is important to me.
I do monthly blood checks on my 8 year old because they told us that she has a good chance of developing it and I want to catch it early so once a month I check her blood right after a meal and then an hour later to make sure it is going down and then I do a morning check around that time too just to make sure. It is cute that your 2 year old wants to be like his brother. It is also good that they have you as an example. Hopefully that will make him going thru it a little easier. Before Destiny’s DX we knew no one that was T1. My dad was T2 and had just started insulin so we were learning with him as well. He just passed away with liver cancer the 11th of this month and I think that is part of Destiny’s problem. I hate to say it like that but can’t think of another word to use. She has told us that he was the only one that understood what she is going thru and now he is gone. I know it is so much for a 12 year old to take in and as soon as we can we are getting her in to see a counselor. Having a little bit of a problem with finding one that will take our insurance that isn’t a days drive away.
Thank you and I really appreciate it. You know I was always scared to join an online support group but this has really helped. Someone that actually understands. What a relief. I just hope she gets the same from her pen-pals.
Natasha, It does drive me crazy but as far as finding another Endo there is only 1 around us and we used him at first and he was basically Overdosing my daughter on Insulin. We were giving insulin every 2 hours around the clock and she was always low so I was having to wake her up at all hours of the night to bring it back up. The Endo we take her to now is 2 and a half hours away but it is at one of the best Children’s hospitals here in the State of Texas. As far as changing anything without talking to her doctor I’ve always been scared to do that. Don’t want to do her more harm than good and from what I understood the ratio thing is difficult and we really need to take the class before attempting it. I am going to look into finding that book.
We did this on the first day Sam came back from the hospital, and then in the first week of school this year. Sam and I taught together (although it’s awesome that your daughter is willing to do it all herself!) and his friends have been soooo supportive. I think that’s a great idea, especially having a whole day for it!!
I will be there if she needs me but I think that she can handle it and want her to be in control of answering most of the questions. The school nurse will be there also for any questions that she can’t or doesn’t feel comfortable answering and then the counselor will also be able to help with the emotional aspect of all of it. Atleast this is the way we are hoping it works out. Will have to let you know on that one. I do have a question for you. How do you know what to change his rates to? I’m thinking of trying this for extra helpings at meals or maybe just extra snacks to start with. So far they have told us that we can give her an extra after school snack at 1 unit for every 15g as long as there is 2 hours between her snack and dinner. This may mean a few extra shots for now but if she is ok with that so am I. So any advice you have in this area would be great.
I feel your pain! This is a very frustrating and heart-breaking thing to watch. I have a 16 yr. old daughter with type 1 who was diagnosed at 2 yrs. old. She is in the same stage your daughter is in. We are trying different things, and one thing we are considering is counseling or mentoring from another type 1 diabetic young adult or even a certified counselor who understands diabetes. I think our daughters are currently stuck in the stage of grief known as denial. There is a grief cycle we all go through when something happens in our life that is negative. I believe these are the stages: shock, denial, anger, hurt, depression, and then resolve and change. The challenge is to get our daughters to process the feelings they are having and to come to a healthy resolve and acceptance of their diabetes. So much easier said than done!
I’m with you, Natasha, on making changes. My daughter’s only been dx since 12/09, and I’ve made several important adjustments. I do read a lot, and our CDE is available within 12 hours by email. Think Like a Pancreas is only my shelf, buyt I haven’t read it yet. I’ve read all of Pumping Insulin, Blood Sugar 101 (valuable, but more geared to Type 2) and Understanding Diabetes by Peter Chase.
