My daughter and I were blessed enough to have the opportunity to here Joe speak -- in actuality, it was more like an interactive discussion program. He was AMAZING. We were all laughing and crying all at the same time. I would ABSOLUTELY give him a try. I don't have much doubt that he will at least have some ideas of things you haven't tried yet. My daughter is 9... I am sure I will go through the same things in a couple years, so I think we all have to help each other out. He's great -- give him a ring (or an email).
Just putting this information out here just in case you may need it...
Cumberland Hospital
New Kent, Virginia
Admissions: (800)368-3472
http://cumberlandhospital.com/
This is a residential program operated by the Brown Schools Hospital for Children. The program accepts children between the ages of 2 and 22 who are living with a variety of chronic illnesses along with emotional and behavioral factors.
Medical Behavioral
Diabetes: Our Diabetes Program was designed specifically for youth whose diabetes is complicated by compliance and/or emotional issues. They may respond by being oppositional, impulsive, frustrated, and defiant to the point of not taking their insulin regularly or by choosing unhealthy eating patterns. We provide medical services, such as nursing, medication supervision, education about diabetes, as well as psychological counseling for their emotional health. The goal of our program is to help patients learn to live with their diabetes in healthy ways. Through a structured program that fills their day with individual and group therapies and activities, patients learn to control their behaviors and begin to come to terms with the challenges of their diabetes.
Hi Michelle !
I was teenager when I got T1 (I was 14), so I can imagine what your daughter feels. After diagnose I was fully depressed for quite some time, but I got out of it. I don't have parent like you are (worrying all the time), I had to take control of diabetes by myself and it was quite rocky drive... I didn't test much (testing was not so common then, DCCT just started that year, so testing before every meal, was not so in), as you can imagine my HbA1c was not that great...
My advice is to find her therapist, that also has T1, so that she knows what she is talking about, perhaps some support group in her own age... It all depends on her character... if some doctor tries to "threaten" me with diabetes problems in old age, that doesn't do it for me... She probably feels isolated, so support group would be right way to go, maybe diabetic camp or something similar.
Hope this helps even a little
Andy
JDV"Smom,
Boy did you hit the nail on the head when you said it's like walking a fine line . . . that's exactly how we feel. I'm almost afraid that if I take more away from her, she is just going to become more depressed and just quit completely. She is pumping, so that makes it a bit easier on me knowing that she is at least getting her basal throughout the day.
I must say when we went to the counselor yesterday, she was miserable about it, but when she came home from school, she seemed brighter. She tested without complication last night and this morning. Maybe something clicked? Maybe I'm just being hopeful. The counselor said basically the same thing. Maybe try to back off of her about the "little things" and not "focus" on her diabetes so much (sometimes that makes kids feel "different") and just go with the flow. Obviously she still has to test and dose because that's non-negotiable, but allow her a bit more freedom and offer up support rather than bugging her all the time.That's hard for me because I also have diabetes and I know the consequences of not testing and dosing and it drives me crazy.
I think part of it is also that I have NO complications. I've been so lucky. I'm so afraid she isn't going to be as lucky. I hate thinking like that, but I'm terrified.
Thanks for your reply. Sometimes I forget, even as an adult, that I'm not the only one.
I was diagnosed with type 1 at the age of 10, in 1958. My parents loved me, but they didn't interfere with me and my diabetes. I was free to figure things out on my own. They tried to help when they could, but really, things were up to me. They rarely argued with me. I didn't always do things correctly either. I've had diabetes for over fifty years. Probably half of the time I was not in good control and I definitely "cheated" on my diet almost daily during my "growing up" years. I don't have complications to speak of and probably know my body better than anyone as a result of taking care of myself when I was young and not relying on my parents. It wasn't until 1984 or so that I got a blood testing machine and in 1998 I got a pump. My A1c is about 7.5 usually.
If I was the parent of a type 1 diabetic, I would do as my parents did. I had a diabetic friend who had a very controlling mother. As a result, possibly, her diabetes was way out of control and she did nothing but argue all the time with her parents. She died before the age of 20.
((hugs)) Michelle.
I have no advice for you, as my diabetic child is 10 and pretty compliant - so far.
I do have a 14 year old daughter that has a similar temperament to your Eliza. It's not easy to parent a teen, much less a diabetic teen. Sounds like you are doing all the right things for your daughter. Hang in there. I hope she realizes soon that she's making life a lot hard than it has to be.
Glad things are a getting better! - I am sure there will be many ups and downs as there always are with teenagers...and with diabetics. Hang in there! Kris
Hello everyone,
This is Zippora Karz, The author or The Sugarless Plum. Your conversation came up on my google alert, and I see Kim recommended my book. Thank you so much for that. For those of you who don't know who I am, I am a former soloist ballerina with the New York City Ballet, and I have type 1. I had a very difficult journey coming to terms with my diagnosis and accepting how to take care of myself and my body.
Michelle, if your daughter ever feels to read my story, and even if she doesn't, she can contact me. I have found, sometimes it helps to have someone out there who is a bit "famous" if I can say that, that understands what they are going through.
You can contact me through my web site
www.zipporakarz.com
All my best to you all
Zippora
Michelle,I have not read all of this thread and my answer will not touch the depth of the problem.It seems you have good advice here and are on top of making things better.For us ,when my daughter hits what I call blocks in the road.I will bribe-it makes no difference to me if the world says don't do it.It has worked for me to get insulin into her body when needed and that test when she would refuse.Thankfully a small bribe would work and get things done and she would be back on track.I only have done this at times,not often.I think for my daughter there is anger at times.I am angry and she is angry.It is not fair and it is ok if we both hate d at times.Just as long as we both don't stay stuck too long in that place.I hope your daughter can find others with d her age.Positive role models that show d does not have to be in control of life.But can be controlled and have a beautiful life.Best Wishes:)
I've been there with my son. I can't really offer suggestions, but I can share what has worked for us. He had a dka in Dec '08 at the age of 12. He's never had good control but I didn't think it was that bad. What a slap in the face. It was scary enough to make me be tougher. His behavior hasn't necessarily improved since then but how I handle it has. I took back control of his diabetes management. Instead of telling him to check his bg, count carbs, or bolus, I just do it myself. I don't make a fuss, I don't compromise, I don't get frustrated when he's high. I may ask him if he's eaten something that he didn't bolus for, but I remind him that I need to know to ensure that his basal and ratios are correct rather than asking because he's in trouble. At first he was opposed to me doing the bulk of his D care. After a while he warmed up to it and now he prefers that I do it.
Obviously if he's in school or out somewhere without me then he has to do it himself and I expect him to. If he doesn't do what's expected he may not be allowed to leave the house for a period of time in the future. Not leaving the house isn't so much punishing him as it is keeping him safe. He may not like it, but oh well. Because I was aggressive, his a1c dropped from 10.4 to 7.2 in a few months. It was enough of an improvement to get him put on a pump. The pump has been a blessing. He's much more likely to test his bg, count carbs, and bolus insulin. It's still a lot of work but it's amazing what taking away shots accomplished. I still count carbs for him as much as possible, and I will bolus for him as much as possible, but he actually takes some initiative now.
I'm not suggesting you take our approach. I'm just sharing how I approached a similar situation. Just know that there is hope. You will find something that works for you and your daughter. It sounds like you're on the right path. She's at a very difficult age. Hormones are raging, she's growing like crazy, and diabetes is a lot to deal with. She probably doesn't want to be different from her peers. There's a lot of work involved and it can be overwhelming for children. They will have to deal with it for the rest of their lives. It's such a small thing to do it for them for as long as we can. As they grow, mature, and earn trust, it gets easier to hand back to them pieces of the responsibility a bit at a time when they're ready for it. Good luck. =)
Hi Michelle. My name is Mattalyn and I'm 15 and have had diabetes for 5 years. I kind of know what your daughter is going through, just not to that extent. Recently my mom and I have become mentors in a new mentoring program that JDRF is doing. You might want to look into that. And I would recomend letting her do it, not both you and her. She might like a diabetes thing that is hers, her place, her outlet, her people, her support. Something as small and 1 thing that's hers will make the difference. Try to find out why, maybe say "If you're not going to test or bolus you have to tell me why. I need to know and you deserve a chance to tell me." Give her the right to be mad, and maybe for safty's sake try to get as many carb free foods as possibe.
I can't tell you how to get through your daughter. I can tell you though I did pretty well as a child because my parents practically did it for me. However, when i became a rebellious teenager, I wanted to do the exact opposite of what my parents told me to do, so things went downhill quickly. Their nagging only caused power struggles. After college, I am finally taking control again and realizing I am doing this for me and not anyone else. That is the only thing that is carrying me through...
I guess the only advice I can give is to be supportive and make them realize it is for them, not for you. There are many camps and ways to get your child involved as well. That way, they can see role models of other kids their age doing what they are suppose to and taking control of their diabetes.. I hope this helps. :-)
I was dx'd at age 13, and absolutely hated when my parents asked me anything at all about my diabetes. I never shared test results, and hated talking about the subject. I spent the first 12 or 13 years of life w/ Type 1 not taking care of myself at all. Looking back all I can say is that it's SO hard at that age to have a disease like this. You just want to be normal, and you think you are untouchable. You think the future is so far away that who cares... Or you don't think at all. Plus the fact that not taking care of your DM and coasting along with high BG levels all the time affects your persona even more... I was a cranky, defiant kids with an A1c of 9-13 during adolescence. I wish I'd been tied down and lectured, or given consequences for my lack of personal responsibility. I wish my parents had taken control more than they did. Sad, but true. I wish you luck, you'll need it.
I remember when I was a teenager and having Diabetes. It was so had and I thought that the world was unfair and that I was getting punished for something that I did. Going though diabetes as a teenager was had and long especially with all the hormones that are happening in our bodies at that age. I was put in the hospital many times and my wieght was down and I hated anything that had to do with diabetes. It was not until I found someone I could talk with that understood my needs until I changed. Diabetes is a hard thing to go through for all ages but support is the main goal. Just start with baby steps and tell her that you love her, I hope all goes well with her troubles. My heart goes out to you and your family.
My story: I feel like I am the complete opposite of all of you out there! When I was diagnosed at age 15, I didn't understand what the big deal was. My mom cried about it, but I guess because I didn't understand the history of the disease it just seemed like no big deal to me. I tested, I bolused, I went to education classes, I ate right, I counted carbs, I did what had to be done and my A1c's were right in the 7.0 range for a long time. But the only thing was when I was first diagnosed, I couldn't physically give myself the shot. I could get everything ready, but then my mom or someone would have to put the needle in me. It didn't hurt and to this day I still don't understand why I had such a mental block about putting a needle in me (my mom said it was a good thing because it meant I would never be a drug addict. ha!).
Then I went off to college and was really on my own as far as remembering to test and take my insulin. I think this is where the downward spiral started. College had its ups and downs, but mostly it was fun! It was great not being around my parents and being able to go to Walmart at 2 in the morning if I wanted! I wasn't a drinker or a partier AT ALL so that wasn't something that contributed to the downward spiral. Throughout everything, I always remembered to take my Lantus at bedtime, even to this day (ok, ok, I have forgotten a couple times throughout the years and once even didn't have it with me on an overnight trip, but overall, I've done pretty well with Lantus). But testing before every meal and doing my shot? Forget it. I don't know if it was my schedule, if I'm just out of the habit of doing it or what. I feel like I can't get motivated to make it a priority and that frustrates me to no end.
I have now had T1 for over ten years and I think my "rebellious" stage only started just a couple years ago. I think counseling would have worked for me in the beginning of this stage, but not now. I know what needs to be done, I know the long-term negative effects, I know I want to be healthy and have a long and bright future....but I couldn't tell you why I don't test and take my insulin like I'm supposed to. I will tell you that I think part of it is the weight issue. I like being able to lose weight and fit into a smaller size when my blood sugars are high. Within a day or two of steadily checking my sugars and taking my insulin, I can't fit into my pants. I don't know if anyone has a solution to this, but I would be grateful to hear suggestions. Right now I am under the gun because my brother is getting married in a month and I'm a bridesmaid and havetohavetoHAVETO fit into that dress! I'm also planning on getting married in the next few years and don't want soon-to-be husband to have to stress and worry about me.
So, I don't know. Right now I feel like giving up--actually, I think I have given up the past few years. I completely understand where a rebellious teen is coming from even though that wasn't the path that I took (I really wasn't a typical rebellious teen anyways--I'm much to practical in nature). But I think right now the rebellious teen is coming out a little more and maybe even a foot-stomping 2 year old! I hope you and your daughter find the right combination of motivational factors that work for her. Diabetes isn't fun and most of the time it can just really suck. I had a good support network of parents, friends, and doctors and it sounds like she does too. Like I mentioned, I think that counseling will work for her or finding some kind of place where she can just vent to someone who will understand. In the end, she is going to have to come to terms with it herself, but that doesn't mean you can't keep helping her along the way.
[quote user="jmatthews308"]I think counseling would have worked for me in the beginning of this stage, but not now. I know what needs to be done, I know the long-term negative effects, I know I want to be healthy and have a long and bright future....but I couldn't tell you why I don't test and take my insulin like I'm supposed to.
[/quote]Thanks for telling us your story jmatthews308. I wish you would re consider your assumption that counseling won't help you. At least give it a try. Sounds like your in some serious denial or something. You can slide by now and wear smaller jeans, but it will catch up to you later. You may not think later will ever get here at this point, but I'm here to assure you that it will, sooner than you think. Pleae give counseling a try. You are not the only person this has ever happened too and there are professionals who can help (if you want help).
Hi there,
I do agree with the other reply that counseling could only help you. Maybe you need to find a different counselor. Here is my suggestion. It is very brave to admit you have an issue with wanting to be thin. And this is a very serious problem, and not easy or fast to fix. In addition, there are foods you can eat that are good for your weight and your blood sugar levels, and I might add taste good and are satisfying. I personally believe we all need to be healthy, every person with diabetes or without. And when you eat for health, your body will find the weight that is right for it. So even if you have body image issues, know about them, and your lack of care for your diabetes, you can commit to eating foods that will help you through this. Don't starve yourself with food or insulin!
If you are interested I can share more of what I do. I really enjoy what I eat!
I hope this helps in a small way
take care
Zippora
You have been given lots of good advice here. Hope you can read all of the different suggestions and figure out an approach that may be worth trying. Give counseling some more time, for sure. Many doctors nowadays think that all type 1 diabetics should be treated for depression. Certainly, if you can remember back to when you were your daughter's age, this is probably the most awful time of life for her self-esteem. At this age, all kids want to do is blend in with other kids. It does seem like some anger and rebellion are part of what is going on and counseling will if nothing else give her an outlet for the anger.
One more thought... many girls at this age are developing curves and think that they are fat because their bodies are changing. And a current very dangerous rage is to not take insulin in order to stay thin. We know of course that the reason this keeps a young girl thin is because her body is in ketoacidosis. But some girls truly seem to think that insulin makes them fat. We know that this is not true, that many type 1 girls and women who are well-controlled are also lean and healthy in appearance. But some girls get this into their heads. It may be worth exploring with a conversation at some point when she is in an approachable mood, just to make sure that this is not an underlying reason for her reluctance to take insulin.
Have you tried asking her how you can help her get better control over the glucose levels? I sometimes wonder if when we involve the teen, asking THEM to come up with ideas rather than telling them what to do, there may be a psychological advantage. A question such as: "How would you like me to deal with this? You know that I cannot just sit back and watch you harm yourself, so I want YOU to tell ME how you would prefer for me to deal with this? Some things are not negotiable -- your dad and I can be charged with failure to protect you if we allow you to not take your insulin. But some things are very negotiable. Will you help me to come up with some ideas on how to help give you incentive to take care of yourself?"
Maybe an opening like that will encourage some discussion. As for the tough love approach, there certainly could be some rewards granted for testing and taking insulin properly. Maybe it should be enough to have her test: maybe she doesn't need to TELL you what her levels are as long as she takes proper corrective insulin. Maybe that is part of the problem: she may feel defensive about her levels, or guilty, and so may be desperate to avoid knowing. The only solution to THAT is to put her in a situation where she doesn't feel judged by what her levels are. Perhaps quizzing her on how to properly figure her dose and watching her test and take insulin without hovering so close that you see the numbers would help her feel less secretive or defensive.
Again, I think we all agree that, as difficult as this may be, you really need to find out the root cause for the refusal to comply. Is it depression, rebellion, guilt? Those three are very different issues, and need very different approaches. Perhaps if you catch her in one of her more sweet moods, you can ask her to tell you what she is feeling in order to help get to the root of the problem. I wish you the best.
I know this is going to sound harsh but she needs to know that if she doesn't take care of her diabetes, it will kill her. I think the therapy is a great idea; I am in therapy (not for diabetes) but it helps with it. I think she needs to talk to other teenage diabetics... I have mentored younger diabetics before. Granted, they were newly-diagnosed but I would be happy to talk to your daughter if you would like.