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Old 02-01-2007, 10:28 PM   #1
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educgradstudent HB User
Parent of a juvinelle diabetic

My daughter who is now going on 12 was diagnosed with type I diabetes when she was 4. When she was younger she seemed to respond to her treatments better and was much better at controlling her blood sugars. Now we are lucky if her sugars are below 200 and often spike over 500. I don't know how to make her see what she is doing to herself and what else my husband and I can do to help her. In fact she tells us how much she hates us because we try to control her food intake. If anyone has advice on how to deal with this type of situation I would appreciate the input

 
Old 02-02-2007, 05:20 AM   #2
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Re: Parent of a juvinelle diabetic

At age 16, my son was misdiagnosed by our family doctor and was extremely sick by the time we got him to the ER several days later. He's a laid back kid who rarely complained about anything, but he was begging me to do something to make him feel better. He about broke my heart. I felt so helpless.

He was in Pediatric ICU for three days, then in a regular room for a couple more days. The GOOD part of that is that he was SO sick and felt SO bad that he never wants to feel like that again and is keeping himself very well controlled with his insulin and tests as he's supposed to.

I wish I had words of wisdom for you. Your daughter is heading into the years when kids want to have a little more freedom and distance from mom and dad's control. Maybe you can make some kind of "contract" with her, giving her some particular freedoms provided she shows she's responsible by doing x, y, and z, which would include showing that she can keep her sugars in a healthy range. If she doesn't keep her end of the deal, she loses those freedoms and maybe has some other consequence, too, like she gets some extra chores or something like that.

Are there any support groups in your area for kids with diabetes? Our doctor was ready to put us in touch with some near us, but my son just wasn't interested. He's so laid back, he just looked at me like I was a nut and asked why I thought he would want to hang out with a bunch of kids he didn't know just because he has diabetes. I had to admit a support group like that didn't really fit his personality, but I suspect there are a fair number of girls who find those groups kind of a retreat for themselves, a place to vent and complain about parents wanting too much control, but also being held accountable by their peers and the leaders.

Good luck. I know that worry only too well, although we're fortunately in a good place right now. I hope someone else has some ideas for you, too.

Blessings,
Emily

Last edited by BlueAtlas; 02-02-2007 at 05:21 AM.

 
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Old 02-02-2007, 09:30 AM   #3
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Re: Parent of a juvinelle diabetic

Emily,
Thank you for sharing your story with me. Maybe my daughter will be open to a support group since we sent her to diabetes camp last summer. We thought that the camp would do the trick, and it did but only for awhile. She saw about 300 other kids with diabetes and realized she wasn't the only one in the world with it. I think some place for her to vent just might be the best thing for her right now. Your son sounds like a wonderful young man with a positive attitude who won't let diabetes slow him down. Thanks for the ideas and the reply, it is nice to know that I'm not alone either.

 
Old 02-02-2007, 12:35 PM   #4
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Cora1003 HB UserCora1003 HB UserCora1003 HB UserCora1003 HB UserCora1003 HB UserCora1003 HB UserCora1003 HB UserCora1003 HB UserCora1003 HB UserCora1003 HB UserCora1003 HB User
Re: Parent of a juvinelle diabetic

Quote:
Originally Posted by educgradstudent View Post
My daughter who is now going on 12 was diagnosed with type I diabetes when she was 4. When she was younger she seemed to respond to her treatments better and was much better at controlling her blood sugars. Now we are lucky if her sugars are below 200 and often spike over 500. I don't know how to make her see what she is doing to herself and what else my husband and I can do to help her. In fact she tells us how much she hates us because we try to control her food intake. If anyone has advice on how to deal with this type of situation I would appreciate the input
I am going to sound a bit harsh and I am sorry about this, but this is my opinion. You are talking about the way she takes care of herself. She is much too young to be saddled with such a huge burden. It is great if she takes a hand in it, but the truth is that she is going to have this disease for a long time. They have been telling the parents of T1 diabetes that there should be a cure in about 10 years since the mid 1950s. A cure is not just on the horizon. Your daughter has a disease that many adults are unable to handle. If you want her well controlled, you will have to take a more active hand in testing with her and monitoring and changing doses.

The other thing to keep in mind is that as she is growing, and her hormones are developing, you sugars are going to go wild. Puberty is difficult enough to handle withou the blood sugar issues as well. This is where you will have to help her as well because you will have a better idea of the big picture. As an adult, you are aware of the fact that nothing ever stays the same. During this time period (maybe as much as 6 years or more) her dosages are going to have to change all the time. Kids don't think of things as changing. They want their world to stay the same. On some level she may even feel that she is getting "worse" if her dosage of insulin goes up.

Whatever you do, don't threaten her with complications. Her brain isn't developed yet to a point where she can understand the consequences 20 or 30 years down the road of what is going on now. If she's not mature enough to vote or drive a car, she is certainly not mature enough to be responsible for taking care of things that will be with her for her entire life. She just doesn't have the faculties. I know that many docs and social workers will push you to get your kid "independent" as soon as possible. From personal experience and some pretty well established experts I can tell you that the independence should mean she can go places and stay over and treat her lows and highs herself. It shouldn't mean that she should shoulder the burden of what is in effect a full time job.

Is she on a pump or on mdi? Either way, anyone in the free world can tell you that strict diets don't work. The beauty of multiple daily injections and pumps is that if you feel you really need to eat that treat, you can bolus some extra insulin for it. Even though I was diagnosed in 1966, the doc made it clear to my Mom that it wasn't necessary to separate me from the other kids. We just had to know enough how much insulin to take for the ice cream and birthday cake.

There are things you can do to help her. You can offer to give her shot for her if she doesn't want to do it. I know every once in a while I still snivel to my Mom and let her do it for me. It is an incredible comfort to know that your parent can take care of everything if you aren't able to. How is she with testing? Does she test regularly? You could get your own lancing device and ***** your own finger along with her. That way she can't throw it in your face that you don't have to do it.

I hope I've helped a little bit. There isn't always a lot of good help for teens and tweens with diabetes. The medical profession sees it as something they have to do and don't stop to think of the emotional costs of the pressure of this disease. The more you can take the burden off her, the more you make decisions for her and do things for her (like how much to bolus and how to calculate it and doing the shot) the less pressure she will feel.

Having diabetes is a tremendous amount of work. You can't do anything without having to think about it. You can't eat, exercise, or even go to bed without worrying about carbs, and blood sugar and insulin and then wondering if you did the right thing and how will things be in the morning. As I said earlier, I'm sorry to say it, but a cure is still a long way off. They talk a lot about islet and pancreas transplants, but transplants are not a cure. The meds have a lot of very bad side effects. It is only another form of treatment and one that is not that appropriate for a young person. So she will have this burden for at least another 10 years as there is nothing commercially available on the horizon. If you have the ability (insurance or available cash) I would definitely look into getting a pump. It will make her life much easier and less restricted.

Good luck to you all, and please keep us posted.

Cora

PS, sorry about the rant, but I see it all the time in friends that didn't have the support that I did from my parents. My folks always took an active role in my diabetes knowing all about my doses etc and I am much more independant and well controlled now. It isn't as hard as it could have been.
__________________
Cora
Dxd T1 1966, 2001 dialysis, 2002 kidney transplant, 2003 insulin pump, 2008 pancreas transplant

Last edited by Cora1003; 02-02-2007 at 02:41 PM.

 
Old 02-02-2007, 02:07 PM   #5
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Re: Parent of a juvinelle diabetic

Ditto to everything Cora said. She did an excellent job putting my sentiments into words.

 
Old 02-05-2007, 11:09 PM   #6
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Re: Parent of a juvinelle diabetic

Hi, all I have is support and sympathy to offer. I am single parent to 3 kids, my eldest is 13 and was diagnosed diabetic aged 7. She is now a very difficult teenager who is determined to never test her sugars, to eat everything she never should, to smoke drink and even try smokable drugs. She says she hates my interference in her life, that she can easily manage her diabetes alone and that if she suffers any long term problems then it's her choice. I'm really not sure what to do next. It's bad enough having a difficult teenager, but when they have a condition that can affect the rest of their life...and they are unable to see or appreciate the bigger picture, then it leaves me feeling desperate. What is the medical support system like where you are? here it is too soft in terms of how they handle children like this. It will be too late in my case, before they get serious with my daughter and step in to help her look after herself better.
I have never visited a forum before, so am unsure of the procedures. I hope you are able to post back with any ideas you may have, or just to talk.
daisydee_2007

Last edited by moderator2; 02-06-2007 at 06:35 AM.

 
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