A Case Study

[Heretic]

We have a 12 yo daughter (Kim) who was diagnosed with Type 1 on her 2nd birthday. There have been the usual ups and downs over the years but no serious problems. My wife is the prime carer, giving injections, finger pricks etc. and constantly nagging her about her dietary choices. As well as general support, I take care of logistics, making sure there is an adequate supply of needles, lancets, strips, etc, as my wife is careless in that area. My wife is very much a ‘black & white’ person (no shades of grey, no compromise) and if she reads something, she will retain the fact - but not necessarily understand it. On the other hand, I am a great believer in common sense and I look upon diabetes as more of an inconvenience than of a life threatening ailment that my wife considers it to be. Consequently, our ideas differ as to the management of Kim’s diabetes. In the last year. Kim has been behaving as most juveniles do. Reluctant to go to bed, pop music, on the phone with friends, etc. She is rarely sick but her appearance, tall, slim and pale skinned, makes her seem so at times. Kim does not inject herself yet, mostly because she relates injections with pain as her mother has never been gentle. Her mother goes ballistic when her BSL goes too high but I tell Kim that she should learn to know her own body. It’s all about how she feels. She will know if she is not feeling well. She doesn’t need a machine to tell her so. Perhaps the very knowledge that her BSL is high (or low) in some way contributes, psychologically, to her well being. Her mother drones on and on about how she will faint at school (she never has) or collapse in the street (she hasn’t even come close).
Having said all that, I will no doubt horrify the purists, medical professionals, etc when I describe how she lives day to day. Kim usually goes to bed between 11pm and midnight most nights. I have tried to change the pattern without much success. My wife plays a passive role in this, preferring just to shout at her. After so many years of nagging it falls on deaf ears. Anyway, in the morning the fun starts. Kim is a slow starter but I have a routine that works. Getting her up (physically) and letting her get dressed fills the time available. She may drink a mouthful of Milo and eat a couple of biscuits - and that’s it. I walk with her to the school bus as she eats a health bar. While at school she eats maybe a sandwich for lunch and some dried fruit, biscuits, etc. When she returns home she is usually quite hungry and eats a meat pie or sausage roll. Then there is dinner (usually pasta) followed by a peanut butter sandwich or cereal for supper. To some that may not seem like much but she does not have a big appetite. I am amazed that she is not as sick as my wife seems to think. Both Kim’s doctor and Diabetes Counsellor are apparently very concerned with her behaviour - although her general health is good. Personally, I think they are just tired of changing the insulin dosage on a regular basis. Is Kim developing some kind of tolerance towards her high BSL? Is her metabolism adapting to cope with food and insulin intake? This is what amazes me - she seems perfectly normal and healthy despite her lifestyle and eating habits. Of course, there will be people who will say I am irresponsible for allowing her to do as she pleases but my philosophy dictates that everything will find it’s own level. Kim will learn to compromise and adapt her life to accommodate the diabetes - not the other way round. The above is just an outline of Kim and her life with diabetes - there is obviously more to the story that I have told. However, let me end by stating that Kim is an ‘A’ student, more cerebral than physical, and to all intents and purposes, healthy. I think that the medical profession tends to forget that everyone is unique, everyone is different. What is good for you may not be good for me. The reason why so many diet programs work (or don’t). I do believe that in the case of diabetes, it is treated generically and that may not suit everyone.

[3js]

http://forums.childrenwithdiabetes.com/showthread.php?t=347


unfortunately, diabetes IS a life threatening disease. d-kids can do anything they want and have full healthy lives. but the fact remains that d-kids can become VERY sick VERY fast. i urge you to rethink your postion on the importance of insulin adjustment and bg monitoring.

[Mama Belle]

Thanks for your post and for being so open about your life with diabetes. I think there is a lot going on in your world right now that is causing stress for all of you with respect to Kim's diabetes care and her world in general. I don't think your wife is wholly responsible for the issues you are facing right now, nor do I think you are (and I especially don't think Kim is). I think there are many things that can change the way we view treatment for diabetes. I do not think that blowing a gasket over high blood sugars is a very good thing for Kim. Diabetes is a serious disease and needs to be treated with a great deal of respect and vigilance in order to avoid future complications. However, yelling at Kim for a high blood sugar is not going to help her to become more responsible with respect to managing her diabetes, it will probably do the exact opposite.

On the other hand, down playing the seriousness of diabetes also isn't doing Kim any favors. How can you expect an intelligent cerebral person such as your daughter to care for herself in the future in a serious manner if you do not arm her with accurate information. Diabetes is certainly not a death sentence and one shouldn't walk around expecting to get sick at the drop of a hat. But, there is a very real danger associated with this disease. Severe low blood sugars in themselves are very dangerous and I can see why your wife might be concerned about her daughter fainting at school (I think most of the parents on this forum have that concern from time to time).

I think it is important to remember that this disease is multifaceted and not definitive. It is ever changing and requires the ability to modify the treatment on a daily basis. With respect to changing the insulin doses constantly I think it is important to keep in mind that at Kim's age her insulin needs can and will change dramatically from day to day. The growth hormones released during adolescence can make a person insulin resistant. Since the growth hormones vary from day to day, so do the insulin requirements. You add on to this the fact that this is a time of rapid growth and that is a real recipe for crazy BSLs. It is okay to not have perfect numbers during this time. But it is also important to try to keep up with the changes as much as possible by changing insulin dosing.

I think out of everything it is important for you guys to remember that your daughter is a teenager (almost) and is acting pretty much like a normal teenager. Some of the issues with Kim revolve around having diabetes, but some of them just have to do with being 12. I think it would be really good for you and your wife to work on getting on the same page with respect to your daughter and her diabetes. If you can each work on trying to understand the other person a little bit more, you will likely be a more united front when it comes to setting expectations for your daughter. I wish you all the best of luck.:D:D

If I can offer some advice, I would suggest that the following books may help you and your wife figure out how to get on the same page and develop a plan when it comes to Diabetes and Kim's treatment plan.

Think Like A Pancreas: A Practical Guide to Managing Diabetes with Insulin, by Gary Scheiner (http://www.amazon.co.uk/s/ref=nb_ss_w_h_/202-0867896-4937421?initialSearch=1&url=search-alias%3Daps&field-keywords=think+like+a+pancreas&Go.x=0&Go.y=0&Go=Go)

Understanding Diabetes (aka the Pink Panther Book) - By Peter Chase (http://www.uchsc.edu/misc/diabetes/ud11.html). This book is used by many people here on this forum and has a section of the book devoted to dealing with diabetes at different ages (they even have a chapter devoted just to teens! (http://www.uchsc.edu/misc/diabetes/ud19.pdf)) The above links are for the read only online version, but books can also be purchased here (http://www.childrensdiabetesfdn.com/publications.html).

[kel4han]

To answer your question, YES, your body does become adapted to the higher blood sugars. She DOES need to rely on a machine for her health. I am sure you are aware of what "good" numbers are, what is too high or to low. These numbers determine her future health. She may feel good at higher numbers becuase her body is used to that, you really need to understand that if she is say 280 and feels good, that is not okay from a future health outlook. Her Meter is her lifeline to staying "normal" Her meter really is dictating where she needs to be. Meters don't lie. If she is running high alot, she needs an intervention from a responsible, educated parent.

[Tamara Gamble]

Hi Heretic,

Her body won't always tell her what is going on until she may be in danger, she needs to use the machine. My son is twelve and he is really great with taking care of things and monitoring things himself etc. Most of the time he cannot tell he is high until he is really high and until he is on a fast downslide he cannot tell when he is low. We need the machine he checks about ten times a day faithfully.

Teenagers are on a different time clock than we are and they sleep alot when they finally do crash out. This is a tough one to straighten out particularly with girls I have noticed.

If your endo won't do what they should find a new one.

Your daughter should be able to eat what she wants to eat for the most part. It's all about figuring out what works for her. You need to learn how to do the adjustments so that you know what to do if there is a problem or something that needs to be changed.

Her behavior may or may not be normal depending upon what she is going through. How long has she had diabetes?

Tami

[miss_behave]

First of all, Type 1 diabetes is most definitely a life-threatening, serious condition. I personally know several people who have died from low blood sugars in the night. It is not something you can take lightly. People die from diabetes.

You may think your daughter looks healthy, even with high numbers. Do you realise whats going on with her poor body on the inside? I'm sure you know of the complications that come with a lifetime of bad blood sugar control. The sad truth is, if your daughter does not control her diabetes, she will get kidney failure, blindness, amputations... the list goes on. Its a bleak outlook for sure. Your daughter has had diabetes for 10 years. Think of the damage caused in that time. I know several teenagers about my age (18) who are already facing complications from not looking after themselves for so long.

What insulin regime is she on?
These days, insulin is matched to the carbohydrates eaten, so your daughter should be able to eat whatever she wants. But you simply cannot just take a fixed dose of insulin a day and eat whatever you want. So yes- insulin doses change everyday, because we eat different things, do different activites, have different numbers on the blood sugar meter etc.
At 12, especially with 10 years of diabetes under her belt, your daughter really should be quite self-sufficient. I'm surprised she doesn't do her own injections. What about lunchtime at school? At friends houses?
Have you considered getting her an insulin pump? It makes life so much easier for a teen with an upredictable lifestyle.

As 3js said- I urge you to rethink your postion on the importance of insulin adjustment and bg monitoring. For the sake of your daughter's health.

[allisa]

Do you visit the endo and diabetes counselor WITH your wife and daughter,have you expresssed your thoughts and attitude to your team ? Because while I understand the "laid back approach", there is a limit as to how much is allowable.....

"but I tell Kim that she should learn to know her own body. It’s all about how she feels. She will know if she is not feeling well. She doesn’t need a machine to tell her so. "


This statement is NOT true......she DOES need the meter to tell her....and while she DOES need to learn how her body feels....you can't assume that she doesn't need assistance.

"Both Kim’s doctor and Diabetes Counsellor are apparently very concerned with her behaviour" .....are you aware of the very scary "trend" of teenage girls who allow their blood sugars to run high in an effort to keep weight off themselves ?? It has been posted on this site several times ( If I can find the links I'll post for you)....what were they terming it ? Instead of Anorexia they wre calling it "diarexia"...I think that is right.....someone let me know if my facts are wrong.....perhaps they are concerned for this ? Or they have other legitmate long term effects they are thinking of.....have you looked into long term complications ??

"What is good for you may not be good for me. The reason why so many diet programs work (or don’t). I do believe that in the case of diabetes, it is treated generically and that may not suit everyone." You are right that not all regimes work for everyone ( that is why some pump, some stick with shots, etc etc) BUT......they ALL use insulin, carb coutning, meter readings and exercise....that underlying equation is ALWAYS there and needs to remain.

Lastly, I have to say that I don't think you sound very respectful of your wife and what she has done to manage your daughters diabets for the last ten years here is how you describe her :

constantly nagging her (not very supportive)

my wife is careless in that area. ( she has a LOT on her plate !)

she reads something, she will retain the fact - but not necessarily understand it. ( wow....pretty condescending statement !)

she relates injections with pain as her mother has never been gentle. (ouch...THAT one HURT me....talk about not gentle !)

Her mother goes ballistic when her BSL goes too high (hhmmm......hostile choice of word)

Her mother drones on (again, not too supportive)

My wife plays a passive role in this, preferring just to shout at her. ( maybe by midnight.....she is exhausted, no ?)

I LOOKED.....but there was NOT ONE positive thing you had to say about your wife :( That is VERY sad !!
I think you need to become a team with your wife.....I think your attitude towards her borders on hostile ! You sound condescending and judgemental and not only is your wife getting that vibe....but your daughter is, too and I iamgine she is playing the two of you against each other.


People can disagree and have different attitudes, but at some point you need to work together for the best interest of your daughter.....and I don't think you are thinking of your daughter at all:(

I have a lot more thoughts, but will stop now as I realize that I, too have now crossed over to hostile.....but you asked for opinions and I think you need to re-examine yourself and what you want in your family......

[allisa]

On the other hand, I am a great believer in common sense and I look upon diabetes as more of an inconvenience than of a life threatening ailment that my wife considers it to be.

I, too am a very practical person when it comes to caring for my children & I AGREE with both sides of what you said above.....

I KNOW it is a life threatening disease that needs respect and diligence, BUT on a day to day, hour to hour basis I prefer to think of it is an inconvience rather than a death threat over our day. So you see, you can be on the same page and see both sides of it.....I think you may be as "black and white" as you claim your wife is......

[Ellen]

I applaud you for coming to this forum to learn about the many approaches to parenting children with diabetes and the varied views of what it means to have a child with diabetes or be a person living with diabetes 24/7/365. That said, respectfully, I have some reactions to your comments and will insert them below and hope you will embrace the dialogue.

We have a 12 yo daughter (Kim) who was diagnosed with Type 1 on her 2nd birthday. There have been the usual ups and downs over the years but no serious problems. My wife is the prime carer, giving injections, finger pricks etc. and constantly nagging her about her dietary choices. As well as general support, I take care of logistics, making sure there is an adequate supply of needles, lancets, strips, etc, as my wife is careless in that area. My wife is very much a ‘black & white’ person (no shades of grey, no compromise) and if she reads something, she will retain the fact - but not necessarily understand it.

How do you know she doesn't "understand it"? Perhaps she understands it differently than you do.

On the other hand, I am a great believer in common sense and I look upon diabetes as more of an inconvenience than of a life threatening ailment that my wife considers it to be.

My son was diagnosed with type 1 diabetes 18 years ago. He's now 19 years old. I see it as far more than a simple inconvenience as does he. In some ways it takes over one's life. In other ways, he just goes with the flow and accepts the myriad of tasks required to maintain health and try to find balance with quality of life. I think to view it as simply an inconvenience undermines the chronicity and relentlessness posed by diabetes.

Consequently, our ideas differ as to the management of Kim’s diabetes. In the last year. Kim has been behaving as most juveniles do. Reluctant to go to bed, pop music, on the phone with friends, etc. She is rarely sick but her appearance, tall, slim and pale skinned, makes her seem so at times. Kim does not inject herself yet, mostly because she relates injections with pain as her mother has never been gentle.

This appears to be a blame on the mother who seems to be doing the best she can. Respectfully, why haven't you been giving the shots if you perceive her mother as never being gentle?

Her mother goes ballistic when her BSL goes too high but I tell Kim that she should learn to know her own body.

Having strong emotional reaction to the high blood sugar is not productive...but it may be out of fear. It would be good to discuss the reaction out of earshot of your daughter. I too used to react to high blood sugar levels out of fear. The best advice pertaining to parental reaction was from Dr. Richard Rubin at a Children with Diabetes Friends for Life conference was "When your child tells you his/her blood glucose level is high, there is only one appropriate response from the parent - Thank you for checking." After that we as parents help troubleshoot to get the blood glucose headed back to target with extra insulin, water, exercise etc. whatever it takes.


It’s all about how she feels. She will know if she is not feeling well. She doesn’t need a machine to tell her so.

The research refutes this as they have asked participants to gauge their blood glucose levels and then they compared with a meter and most of the time, the patients did not accurately know what their blood glucose levels were. While I agree with you it is vitally important for a person with diabetes to trust what their body tells them, it is equally important to confirm with a glucometer to determine if insulin or food/drink is necessary to help them feel well.


Perhaps the very knowledge that her BSL is high (or low) in some way contributes, psychologically, to her well being.

There may be some truth to this if one learns to judge themselves based on blood glucose readings - high being bad, low being frightening etc. Often adults will express if blood glucose is high in the morning, it's going to be many hours until they feel better.

Her mother drones on and on about how she will faint at school (she never has) or collapse in the street (she hasn’t even come close).

"Drones" what a strong statement. Sounds like her mother is afraid of what could happen. As a parent, do you have no fear about it at all? I know I have that fear and will ask my son to check blood sugar, make sure he has glucose tablets or other food on him in the event of a low while he's out on his own. Have you ever witnessed a person having a hypoglycemic reaction? Sometimes it seems to come out of nowhere.

Having said all that, I will no doubt horrify the purists, medical professionals, etc when I describe how she lives day to day. Kim usually goes to bed between 11pm and midnight most nights. I have tried to change the pattern without much success. My wife plays a passive role in this, preferring just to shout at her.

Passive and yelling - oxymoron? Sounds like the mom is frustrated because she knows your daughter needs sleep to function well.

After so many years of nagging it falls on deaf ears.

Welcome to the club. It's always a challenge to update how we respond so they listen to 10% of what we say.;)

Anyway, in the morning the fun starts. Kim is a slow starter but I have a routine that works. Getting her up (physically) and letting her get dressed fills the time available. She may drink a mouthful of Milo and eat a couple of biscuits - and that’s it. I walk with her to the school bus as she eats a health bar. While at school she eats maybe a sandwich for lunch and some dried fruit, biscuits, etc. When she returns home she is usually quite hungry and eats a meat pie or sausage roll. Then there is dinner (usually pasta) followed by a peanut butter sandwich or cereal for supper. To some that may not seem like much but she does not have a big appetite.

Are there any fresh fruit or vegetables eaten or doesn't she like them? How is her blood glucose control with what she eats and the exercise she gets? How often does she check blood glucose levels during the day while away from home and in order to know she has the right amount of insulin in her body for the foods she eats?

I am amazed that she is not as sick as my wife seems to think. Both Kim’s doctor and Diabetes Counsellor are apparently very concerned with her behaviour - although her general health is good. Personally, I think they are just tired of changing the insulin dosage on a regular basis.

What evidence do you have that they are tired of changing insulin dosage on a regular basis? Did you know that during puberty doses need to be changed frequently even if our children do the same thing everyday and eat the same foods everyday?

Is Kim developing some kind of tolerance towards her high BSL?

How high is her blood sugar running? Surely people get used to the highs and the potential results can lead to damage as a result of consistent long term hyperglycemia. While this article is 10 years old, it's still important to read about applying the knowledge gained from the DCCT to children and adolescents: http://journal.diabetes.org/diabetesspectrum/97v10n4/pg259.htm

Is her metabolism adapting to cope with food and insulin intake? This is what amazes me - she seems perfectly normal and healthy despite her lifestyle and eating habits. Of course, there will be people who will say I am irresponsible for allowing her to do as she pleases but my philosophy dictates that everything will find it’s own level.

What do you mean "everything will find its own level"?

Kim will learn to compromise and adapt her life to accommodate the diabetes - not the other way round. The above is just an outline of Kim and her life with diabetes - there is obviously more to the story that I have told. However, let me end by stating that Kim is an ‘A’ student, more cerebral than physical, and to all intents and purposes, healthy.

Her health is likely your wife's goal as well as your goal for your daughter, although you each may have different approaches. Your wife may feel compelled to focus on the physical health and you may be more concerned with the quality of life/psychological health. Both are equally important and that's what we all need to do - find a healthy balance with all of it...easier said than done.

In the 18 years of communicating with families of children with diabetes, it seems parents of exceedingly bright kids often excuse the diabetes care because they feel their children are so smart and do so well in school. We just cannot let the diabetes care slide. The reality of diabetes is that it can do damage when hypoglycemia and/or hyperglycemia are the norm.

I think that the medical profession tends to forget that everyone is unique, everyone is different. What is good for you may not be good for me. The reason why so many diet programs work (or don’t). I do believe that in the case of diabetes, it is treated generically and that may not suit everyone.

AMEN to that and we do have to consistently remind the healthcare professionals and ourselves of the need for empowerment for each individual to find a healthy balance in life.