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A Question for Katherine( or anyone who is interested)

O

oskar

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A while ago Katherine posted that one of the things she is wary of about DAFNE or some courses is that people meet to compare stories about manipulating results.

My son who is 13 has recently started attending an expert patient programme called staying positive which is for children and young adults with chronic medical conditions and facilitated by them. Today I attended an event in Wakefield where someone talked about a similar programme called get sorted- apparently children have talked about things like manipulating insulin to loose weight. I asked the question what if instead of working things through the kids decided to do things that compromised their health or considered doing things that would never have entered their heads- a bit like kids who are sent to young offenders institutes and come out as hardened criminals. I was made to feel this was a very trivial question-after all I am only a parent. I have noticed that whenever I ask a question like this everyone always moves swiftly on or reverts to waffle speak, acronyms etc.

Sorry if this sounds very po-faced and judgemental but what does anyone else think.
 
You're not going to help kids control their diabetes by keeping knowledge from them. In fact the only way to stop them from doing these things IS to educate them. That includes courses like DAFNE.
 
Hiya,
I think there is something in what you say, but I always tell myself that the health professionals see things in a textbook sort of way, whereas we, as parents of diabetic children, see it affecting real lives, our children's and our own. It is much more complicated from our point of view than from theirs. I try to ignore it when I feel patronized!! I think they 'move swiftly on' and try and shut us up when certain questions unnerve them, because they're outside the textbook world they operate in. Just my opinion.....
Sue
 
I agree about Dafne but I am not sure that discussing how to manipulate insulin is useful for children who have never thought about doing this and I am wondering if these "facilitators" have the skills to deal with this or if some of the children should be receiving help from psychologists.

Thanks for your reply.
 
Or maybe a bit of both love and discipline at home? Just a wild idea, as opposed to sending them to a shrink.

If they discuss it they can explore the subject in the open.
 
Hi Oskar

I don't think the point you made was trivial. As a young diabetic, I was never aware of the connection between manipulating insulin and weight loss until a diabetic consultant told me that lots of young women manipulate their insulin to lose weight. At the time, weight wasn't an issue for me as I was quite a skinny person. However, I can see that if I had had underlying weight issues, that kind of information might have tipped me into not taking insulin etc.

It's hard to know what to do though, as sweeping things under the carpet doesn't really help, especially for those young diabetics who are having problems around weight. They're the ones who need educating about the harm that missing shots can do to their bodies. But at the same time you don't want to draw attention to missing insulin as a weight loss strategy to those suggestible young people with vulnerabilities around weight. I suppose like all teenage issues you have to trust that your son's got a good head on his shoulders and will muddle his way through teenage challenges without too many problems. What does your son think about it?
 
With the media daily screaming about Britain's overweight children I can actually see this becoming more of a problem.In susceptible children and teenagers manipulating insulin to be thin could and does happen.
 
Luckily this subject has not been discussed on the course my son attends -he really did not want to go on the course, went and actually had a great time. Just gave them all an opportunity to have a caht ,offload, they did a drama workshop and it was a good day. He has 2 more sessions.

My question really arose from a day I attended yesterday-evaluating diabetes care, for those who live in Yorks and Humber. Lots and lots of people there- Sue Roberts (diabetes Tzar before Rowan Hillinson) Dr Fiona campbell, dof health commissioners and people like me- parent, volunteer etc.

Interesting day-one phrase used a lot was people with long term health problems to be "armed and dangerous" also a lot of discussion about how everyone will havetheir individual care plan, more emhasis on empowering people etc.

I went to a workshop on children and young people and these workshops were discusssed- when I heard about these stories of manipulating insulin as a parent it worried me and also reminded me of a comment Katherine had made, at the moment my son is doing well and I worry that some children will be doing exactly the opposite of this and these courses wont encourage better care.

I agree that love and discipline are needed but I'm afraid where I live, many parents are really not too bothered what their kids are doing as long as they are doing it way from them. I also think children with eating disorder do need intensive and specialist help -I don't believe these young facilitators have the skills to cope.

Thanks for eveyone's views- I agree that this constant emphasis on obesity in the press is unhelpful.
 
Hi Oskar,

Your question to the health professionals who run the courses is one that I think needs a straight answer.

In WW2 all the officers who had attempted escapes were put in Colditz Castle. This was meant to be the ultimate security prison. All the officers who were put there were much more motivated to escape and their inventiveness led to several successful escapes.

I perceive forums such as this, a place where highly motivated and inventive individuals can meet up and help each other solve problems regarding diabetes management.

So far, DAFNE has not been offered to Steven and if it was I'm not sure I would be cartwheeling about with glee. BRUCIE is the local version but it is for over 18s and the first run was unsuccessful. The average hbaic was 9.5% before the course and 9.5% 3 months after the course.
I don't want Steven to learn how to up his hbaic by 4% thank you very much.

I suppose that Steven will have to make his own mind up about any courses he attends in the future. One of the members of Diabetes Support Forum attended recently. Her hbaic is 5.3% and she had been told by her DSN that this was unacceptable. DAFNE's hbaic targets are 6-7% but they usually acheive 7-8%. The woman running DAFNE conceded that you couldn't really get to target blood sugars for pregnancy without carb restriction but said that it was acceptable "risk" on the short term for the sake of the baby. The "long term effects" on the mother of such a diet were not known and that is why restricted carbing is not recommended. What risks I wonder are worse than going blind, going on dialysis, getting your legs amputated, living in constant pain and having a stroke?

I worry that Steven could meet the diabetes equivalent of "a bad crowd" at BRUCIE or equivalent. And that is just the staff.
 
Thanks Katherine,

At the moment Louis has a HBabc of 6.1- he is actually managing to achieve this on Novomix, but he has had a couple of c-peptides done and is actually making some insulin ,although c-peptide is now out of normal range. I read the articles you wrote for IDDT on metabolic memory (the first time I ever read about this was in the JDRF publication- Breakthrough/Countdown) it is odd that this is never mentioned, especially as you say in the first years when the hypo counter response is better.

Lol about comment about the bad crowd. As you say, talking to well motivated people is a wee bit different to many of the people we tend to meet who are often dismissive and tend to make you feel that you are a bit obsessive whereas they are "just getting on with it."
 
My older daughter (Type 1) is 14, and obsessed with her weight. She knows about 'diabulimia' and teenagers not using insulin as a method of weight control. We discuss these matters at length, openly and without flinching. She thinks it's a dumb idea - long may that attitude last. She's very sensible and well aware of the risks to her longterm health of not keeping her BG's under control. I suppose I should just thank my lucky stars and hope she doesn't change.

What does break my heart is when she compares herself to airbrushed models in magazines etc and hates herself. There is far too much pressure on young people these days as far as this issue goes.
Sue
 
Doctors do it all the time <sarcasm>

It's all part of the "management culture" IMNSHO, where targets are more important than reality: you measure something that's easy to measure rather than something that needs to be measured and use what techniques you have to manipulate the numbers rather than solve the problems.

No doubt many diabetics have learned to make up their readings to please the staff rather than concentrate on REAL control ( somewhere there is a rather horrifying site of diabetics' stories where they admit to doing this even while their legs come off).

Really it's down to the parents to teach the children the reality of dealing with the situation, the education system in general also concentrates on targets so the training begins young.
 
Trinkwasser, you wrote:

it's down to the parents to teach the children the reality of dealing with the situation
Click to expand...

You are so right. Unfortunately I can't rely on NHS clinic staff to give correct information to my son. The problem is exacerabated by their policy of excluding parents from the consultations once the child gets to the age of 14.

Their take on this is to give more responsibility to the child.

My take on this is that the child then loses the support of any other adult who can see through the hogwash that they systematically peddle.

I am very wary of the medical and dietetic staff I meet at the hospital because I do not have the belief that they have my son's interests at heart.
 
There was an example of a diabetic girl on a TV programme, who stopped taking her insulin, to loose weight and ended up blind.
As parents (and grandparents) we have a duty to help our kids learn to assess risk with proper understanding. We can only do this by talking everything through and presenting evidence and reasons. It's best done early. Well before it becomes an issue bound up with peer pressure.
I remember doing this on the subjects of shoplifting ( it never happened) drugs and underage sex(also never happened) with my daughter. Now she's a responsible married mother herself.
I was always honest with my daughter and although some of the talking wasn't particularly easy. It paid off.
 

BE VERY CAREFUL in case they decide you have Munchausens By Proxy and take him into care!

Otherwise I agree, sadly with a few exceptions current NHS protocols are still in the Dark Ages compared to what so many patients achieve when they get decent information.

The only good thing is that in general Type 1s are treated less crappily than Type 2s.
 
Yes, at least type ones don't get blamed for becoming diabetic in the first place.

Steven reminds me that two of his classmates ( while still aged 15) became fathers. Fortunately he is getting too old to take into "care."

It is ridiculous that parents have to keep their kids away from health professionals who are determined to make sure they will get complications from diabetes.
 
that is a very negative coment - there are alot of HP who are helping young people be independant - you will have to let go sometime and its tough - i dread my 3 kids leaving home but they need to do it.
 
Tell me Ally ,when your kids leave home are they likely to be given bad advice which could seriously affect their health? No, well that is what Katharine is talking about!!She is not talking about breaking the apron strings but the survival f her son into adulthood!!
 
Ally,

I've been going about the complications which as you know are considered mainly to be the hyperglycaemic ones which take 5-20 years on average to become obvious. The thing is that hypoglycaemia is even more of a worry. Even a typical restricted carb diet of 70-90g carb a day reduces hypos 20 fold in type ones. (Neilsen)

It is a terrible shame that most type ones never even get the option at mainstream diabetic clinics.
I know you know enough not to flog the higher carb diets but so many of your colleagues won't deviate from the Diabetes UK / Government Food Standards Agency protocol.

Adolescents need guidelines for living. Not for dying.
 
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