Don't know what to do


#22

On a lighter note, I’m reminded of the stage musical, “The Fantasticks.” Two fathers lament on the unpredictability of raising children:

"Why would the kids put jam on the cat?
strawberry jam all over the cat
why would the kids do something like that?
they did it 'cause we said NO!

And later, they remark on how much more satisfying it is to plant vegetables:

Plant a radish, get a radish
not a Brussels sprout
when you plant a garden
you know what your about!

They go on to describe raising progeny as “hodge-pogeny.”

In spite of the comedy aspect, there is a fair measure of truth here about raising children.


#23

You cannot stop her future! You are not capable of altering her past… all you have, they sole thing you can help her change is NOW.

Having read a couple more pieces of the thread… at some point she is going to date, right??? Yeah I know when she is fifty and will be immune to idiocy hopefully. That one is not your choice, you can forbid, ground her, if she makes stupid or defiant choices. But the experiences are hers right?

Consider talking to her about her choices, don’t pull any punches, give it to her straight. Lots of ways to do it… barter, parental decree, maturity (hers), the truth is that she does not need to test, it’s only existed since the early 1980s, not common usage until the late 80’s and not that good either. We lived just fine without them, far more disciplined, easier insulin’s (imho) but we did

Make HER explain it to the endo, make her explain why the paper is blank. Making adult choices, force her to be the adult in the room.

What do you think would be effective? All kinds of ways to get at this… go after the body image, preventing uti’s, being “normal”… lots of different things to get her there. Different tweaks to see what motivates her, and tools to use to get her there

Ever considered a diabetic psychologist? It’s one option… diabetic Camp would be another. Give us some more background what makes her tick bet we’ll have some ideas.


#24

She is 15 and fairly recently diagnosed? She has the typical teenage angst with a T1 multiplier. So aside from becoming a young adult, she has to face the fact that she has to develop a “new normal” I was lucky, I was 30 years old when Dx’d with T1, but I had been raised in a family of professional ballet dancers - Monday weigh-ins, general avoidance of just about all food, overly developed self-discipline glads - I had no problem adapting to the new normal that is T1. Your daughter, well she got to be a “regular” kid - eating and doing the things her friends do.

Yeah, you and your wife need to get a semblance of the same page. That’s where your daughter’s Endo can help.And if the Endo has a lot of teenage patients, he/she is well versed in this. But maybe your daughter would benefit from meeting other T1 teens. She ,may very well learn that yeah, she can be cool and still manage her D well. And although middle age is a long ways off, she might learn that doing her D well will result in her looking (yeah, I am shallow - but hey, whatever works ya know) and feeling a helluva lot better than her contemporaries when she is older. As an example, I got together with college girlfriends a few years back (we graduated decades ago) and I was the only one who didn’t have to wear elastic waist bands, and looked great in my skinny jeans. (Even my Endo says that if being fashionable works as a motivator - go with it). Realizing that she isn 't the only kid with T1 is majopr. And google celebrities with T1 She’ll learn that famous actors, musicians, athletes, have T1 and are still gorgeous, successful winners. And check out D camps. Attendees aren’t treated like frail sick kids, but do learn that T1 is indeed do-able and something that they can be proud to manage.

Speaking of the Endo, you mentioned that the written logs weren’t being completed (I had done patient -I am not an Endo,I work with T1’s) whose handwritten log was obviously done the day before - same pen ink and they got carried away and filled in numbers for two weeks into the future!. Anyway, the meter,pump etc can be downloaded at the Endo office.

And all of you should read “Think Like a Pancreas” by FGary Scheiner. A CDE extraordinaire with T1 himself.The title of the book Think…Pancreas sums up the new normal. Cuz that is what she is taking on, thinking like a pancreas. Reacting to what she does and what she eats.


#25

Every single diabetic, especially those diagnosed before or during their teenage years, do some ridiculous rebellion tactics. T1 is a miserable lonely disease. As long as your daughter takes the appropriate amount of insulin to cover what she eats and times the bolus correctly, it’s no worse than anybody else eating fast food and cake.
You need incredible patience for this. First, have a long serious discussion with your wife and together determine how best to approach supporting your daughter as a T1. Second, research local diabetes classes that all three of you could attend. Those classes can teach you all about how to navigate boluses for parties, eating troublesome foods like pizza, bagels, Asian, etc. They can coach her through how to handle athletic pursuits like swimming, running, strength training.
Third, try to find a healthy cooking class or nutrition class for all three of you. Make it a “improving all our health” project.
At some point, your daughter will come to learn that she feels so much better if she keeps her diabetes under control and lives a healthy lifestyle. Best of Luck!


#26

My perspective of having a teenager with diabetes I think you need to take a step back and re-evaluate what you are doing and develop new habits with her. Being diagnosed in August, if you are anything like me you are still in a grieving, and normalizing mode, calm down…Deep breath…It is going to be ok.

If you haven’t already gotten a Dexcom, I would get one. That will allow your daughter (and you) to see what the food is doing to her. Every one one of those foods can be managed, but without data it is difficult to understand. Even if she was only to wear a CGM for 2 months, you would be light years ahead of where I expect you are now.

Next, I would work to develop a consultative relationship with your daughter and her diabetes. If I may suggest, you might start by having her educate you on how she is bolusing for those foods, and develop a genuine curiosity to test to see what the results are. This will allow you to have a line of communication. Try your hardest to do this with no judgement.

Hang in there it gets easier. (approaching our 2 year anniversary)


#27

DEFINITELY GET HER A THERAPIST! Preferably one trained in diabetes but anyone. She needs to learn to cooe without food indulgence.


#28

Maybe you should suggest she find groups to be part of, such as tudiabetes, so she has others to talk to that are the same as she is. I was a teenager with t1 and then had a teenage son with t1. My son didn’t hear what I was saying and wasn’t listening to the doctor, educator. But, he found groups to vent to and get advice from. Who were also telling him the same things the rest of us were saying. But he listened more to the others who were in the same boat.


#29

Many forms of medical treatment are so harsh and overwhelming that patients sensibly refuse to comply with them or accept them. This happens often in dialysis, when patients find that the treatment so much undermines their quality of life that they discontinue therapy and die, usually within a week or two. This is done typically with the approval of the patients’ doctors, since their doctors recognize that the treatment simply demands too much of their patients. The same is true with older patients for whom the rigors of chemotherapy are deemed excessive, and who decline treatment for their cancer with their doctors’ approval.

So why don’t we extend the same reasoning to diabetes? If a patient judges that the rigors of strict blood sugar control are just too much for him or her, then we should accept that as their decision and just let them ease up on it if they want. With the stress of constantly trying to get the numbers right, constantly living under the threat of potentially deadly hypoglycemia, taking repeated insulin injections and making repeated blood tests every single day of your life forever, perhaps some patients are reasonable in refusing to accept that destruction of their quality of life.


#30

This seems like an incredibly insensitive comment. She’s a teenager. How could she possibly understand the effects of her actions at that age? How could you expect her parent to not want her to live as healthy as possible? Are you a troll?

Comparing an elderly person with cancer to a teenager with type 1 diabetes is absolutely outrageous. I’ve had diabetes for 22 years, and I’ve created a pretty awesome life for myself despite the stress and rigors of living with diabetes. However, when I was first diagnosed, I told my mother that I’d rather die than live with this disease. It’s definitely become easier to manage since then, but the shock of dealing with this forever is really hard on a newly diagnosed person. I’d rather we help them and their parents cope with it than perpetuate feelings of hopelessness.

What exactly was your intention with this post? If you want to mourn your diabetes (which I totally get), then create a new thread about it.


#32

It is universal practice in medicine to balance the stresses of any therapy against the anticipated therapeutic benefits, and it is always left up to the patient to decide whether the burdens of the treatment outweigh the benefits of it. Very young patients, confronted by the burdens of dialysis, for example, often withdraw from therapy, and their physicians support them in this. In fact, 25% of all patients on dialysis eventually voluntarily withdraw from it, because of the burdens it places on them and the reduction in their quality of life. They do this despite knowing that the alternative to continuing the treatment is not just the complications of diabetes but death within two weeks.

So the point should be clear: all medical treatment is a balance between its costs and its benefits, and because of the autonomy of each individual human being we are morally required to allow them to determine for themselves how much of the treatment is worth it.


#33

I’m kind of shocked and dismayed. It has become clear that in humans, judgement doesn’t really mature until you reach the age of 30. Teenagers are notorious for making bad judgement calls. And suggesting that choosing to die is simple a personal decision fails to account for the impact that such a decision has on those around us. It breaks my heart to think that a “very young patient” would be allowed to make a decision alone that they have a right to die. It isn’t supported by laws and it isn’t supported by moral or ethical standards.


#34

I think there is a big difference between a patient on dialysis or a cancer patient and a young type 1 diabetic. I agree about balancing treatment with quality of life to the extent that not everyone needs to live according to a rigid diet and maintain an a1c in the 4s. You can’t compare dosing insulin and testing to dialysis or chemotherapy however, that’s ridiculous.


#35

The mature minor doctrine in law states that “any unemancipated [i. e., still living with parents at home] minor of sufficient intelligence so as to understand and appreciate the consequences of any proposed medical or surgical treatment may withhold consent for those procedures for him- or herself.” This is applied in both Canada and the United States.


#36

I’m not a medical or health lawyer but it isn’t that simple. There are provincial laws and have been courtroom battles dealing with these situations. Regardless, type 1 diabetes is not comparable with cancer or kidney failure where a patient is faced with a series of bad choices and may sensibly refuse treatment in certain situations.


#37

That is just so deceptive. You need to go back and reread this stuff. Even a mature minor must go through significant hoops to refuse medical treatment in defiance of their parents or guardians. And then this involves courts who will not let a minor commit what is essentially suicide especially for a readily treatable condition like Type 1. I really don’t know where you get this.


#39

Hi, @Eric31.

I’m sorry about your daughter’s diagnosis and the difficulties you are currently having.

I haven’t read every comment here - there’s lots of great advice from people who have lived it to provide perspective, which I found very helpful when my son was diagnosed in 2007. I agree that giving your daughter autonomy and choices is important, including eating that cheeseburger. I think it will be helpful if not only you and your wife can be aligned, but considering your daughter’s age, that the three of you can be aligned.

Can you agree to certain parameters? I may be misinterpreting but it sound like there are two ends of the spectrum in play - one where food choices are wide open without much consideration to affect on bg, and the other where food choices are entirely restricted to ease the management of bg. Is there a middle ground that considers both freedom of choice and the importance of good food choices?

Although your daughter is older and deserving of autonomy, she is still a child. My son will be 15 in January. He is greatly autonomous and has nearly eleven years of diabetes under his belt. But there are still things that are not negotiable. He must bolus and finger stick and change his sites regularly, and if his numbers start to trend in an undesirably direction, then we need to take steps to get them back on track. We don’t have a defined range that’s required - we just know when things are getting looser than we’d like. But since this is newer to you, perhaps defined measurements would be helpful and you can discuss them weekly and make tweaks as a team.

You’re all still learning. Don’t be too hard on yourself or be in too much of a hurry to master everything. But if you can deal with one thing at a time and develop goals and strategies one by one, you’ll have progress and in time it will all be much easier.


#40

For an example of the mature minor doctrine, consider the Canadian Supreme Court ruling in A. C. v. Manitoba, 2009 SCC 30, at paragraph 121, per Justice Abella. She said, speaking of the child, A. C., who sought to make her own decisions of what her health care program should be in relation to statutory restrictions which might have limited her options, “… she successfully argued that the provisions [of the restrictive legislation] should be interpreted in a way that allows an adolescent under the age of 16 to demonstrate sufficient maturity to have a particular medical treatment decision respected.” The case was brought to assert the minor’s Charter s. 7 right to “life, liberty, and security of the person” against interference by the state.

Keep in mind that we are not even close to discussing the freedom of a minor to kill himself, but just to adopt a looser approach to strict blood sugar control, which every single young diabetic in the world had up until the mid-1980s, when home glucometers first became available and made strict control possible. Everyone on this forum, including myself, who is a long-term survivor of type 1 diabetes, went through a good 20 years without anything approaching the strict control observed today, and yet we survived. So no one should equate the decision not to observe strict control with suicide.


#42

While there is room for discussion in the forum on how tight of a control one chooses and it is loosely related to the OP, let’s try to get this discussion back to its intent - supporting @Eric31 as a parent of a newly diagnosed teenager.

@Eric31 - I hope the tangent in the discussion hasn’t discouraged you from responding. I’m curious about how things are going. How are you?


#43

I agree with Tim. Why can’t people use the knowledge they have gained thought living with diabetes or their loved one to be of assistance instead of going on some tangen trying to prove they know everything and start almost every reply that ALL people ALL doctors and All hospitals do this or that which just isn’t true. Teen age years are hard because they just want to be like everyone else. I hope the three of you can work together with some give and take and balance out. Their are so many people that can give you useful advise here. Is there a teen diabetes group in your area that might be helpful.


#44

Thank you things are fine we have our ups and downs of course. But for the most part my daughter is doing good with taking care of herself. I have been taking a step make and let her make her choices . She stays on top of bolusing and testing. She now has a decom which is a huge help but we stI’ll have a ways to go before we use it to its full potential. I appreciate all the feed back I’ve been getting it is very helpful.