DAFNE experience - the good and the bad!

[donnellysdogs]

Ayah, not in my particular case of stomach probs I agree. However, dafne is there as a tool to help people to self manage their diabetes. It is only because I had such superb advice 30 years ago that has enabled me to look at my levels, my exercise and food and insulin needs. With the prompt of my gastro consultant asking me what had changed in my diet in the previous 12 months enabled me to understand what happened in my case.

I was very lucky that I did not need dafne to prove that I managed my diabetes with carb counting and diet and managing my insulin and that a pump would help me. However, the care and advice that I got given 30 years ago from Poole Hospital seemed to fall by the wayside in the NHS as a whole for a long while, and then of course in 30 years many people have become used to carbs, ready meals, junk food etc.. I didn't.

I understand why dafne is now seen as a necessity to help diabetics to self manage. Albeit I haven't used it, I am certain that it is helpful in this day and age.


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[mo1905]

I'm not entirely sure, but I would point to the following
1. constant daily activity helps
2. low BMI helps
3. low body fat index helps
4. good diet helps
5. possibly low duration of T1 helps
6. possible low age (50 or under at a guess)

These may all help in keeping the digestive system constant. Alter 1 or more, and I postulate that the digestive system becomes more unstable, and so an open-loop control becomes more difficult

So, if your diet is relatively healthy and not too overweight then DAFNE works ? I understand the open-loop thing and digestion but what I still don't understand is why readings would be different every time ? There is always variances as diabetes is not an exact science but if I ate the same meal then my BG levels should not vary by more than 10%, excluding exercise factors. I'm not 50 yet so I can't say for sure. I'll get back to you. Unless there are 50+ members out there carb counting and struggling ?


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[smidge]

However, after being on a dose adjusting course surely you are told to monitor your readings after meals and look for patterns etc?

No, quite the opposite. DAFNE forbids you from post-meal testing. They insist you test before meals and calculate your dose based on carb units/bolus ratio + correction. You have no data from after the previous meal/jab, so when the following pre- meal figure isn't what you were expecting, you have no idea what your BG has been doing over the previous 5 hours or so. You take a wild stab in the dark at it and the implication is that you miscalculated the carbs or the dose at your previous meal or your basal is wrong - but you have no way of knowing whether you spiked post-meal or drifted up gradually because you don't test.

My week on DAFNE was the only time and place I've ever been made to feel ashamed of testing. I had to sneak out and test n the corridor to avoid getting told off by the tutors for non-compliance.

Smidge

 

[mo1905]

Good explanation Brian. It makes more sense now. So, to summarise, are we saying that once we reach 50ish, carb counting is pointless and we should just "guess" our insulin requirement or are the tolerances we are talking about still acceptable according to DAFNE teachings, in regard to dynamic ratios and ability to self adjust ? If not, is there a better method than carb counting ?

 

[CollieBoy]

PS ....shall I make a separate thread explainig closed-loop and open-loop control, and the control systems in the body associated with BG, and where the systems are "broken" in T1 and T2 ??

btw I found these by googling
possible T2 http://www.atp.ruhr-uni-bochum.de/DynLAB/dynlabmodules/Examples/WhatIsControl/WaterLevel4.html
non-diabetic http://www.atp.ruhr-uni-bochum.de/DynLAB/dynlabmodules/Examples/WhatIsControl/WaterLevel5.html

Yes please and STICKY IT for those involved to use.
Perhaps an "advanced level - post DAFNE" kind of forum could evolve

 

[Brunneria]

Lots of people are referring to the 'normal' diet.

Huh?
What on earth is that?
To even pretend that there is such a thing (and the assumption seems to be that it is high carb), involves a massive dismissal of social, cultural, age, regional, even sexual, variations. I said sexual because I don't know many men who are chocoholics but I work with 5 women who are.

I won't fall into the temptation of ranting about how sugar has only been widely/freely/cheaply available for an evolutionary blink of an eye (approx 250 years), and is therefore emphatically not 'normal' compared with the diet we evolved to consume. Having magnificently curbed my rant on that subject...

Instead, I will just say that most people assume that what they eat is 'normal' and what other people eat is not, whether that is high salad, low saturated fat, high takeaway, or low veg. In light of this, even using the word 'normal' is a nonsense, and it has done nothing to clarify discussions in this thread.

Using the word 'normal' in the title of the DAFNE course is probably a large part of why it is not reaching its potential results.

 

[mo1905]

Because the "normal" referred to in DAFNE is personal. It's doesn't tell you what to eat, just how to dose for it. Also, why is there an assumption it is high carb ?


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[mo1905]

I don't think the wording matters too much to be honest. Normal eating or everyday eating means nothing to me. I just learned to adjust dose to what my diet is. That is what is "normal" to me. My diet may change next year but it will still be my normal diet. It's the course content, not the title that is important. Although, as we have discussed in the past, it's not perfect but there is not an alternative at present.


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[Brunneria]

Because the "normal" referred to in DAFNE is personal. It's doesn't tell you what to eat, just how to dose for it.


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Precisely. People think that what they eat is normal, and the course reinforces that.

Not always in their best interests though, is it?

 

[mo1905]

Precisely. People think that what they eat is normal, and the course reinforces that.

Not always in their best interests though, is it?

I see your point but because everyone's diet is different, a single course would be impossible to cover all options. That's why they teach carb counting rather than force a diet on someone. I think eventually they may slant towards a reduced carb routine but even then, that's open to huge debate. Your carb intake will be different to mine. At least by sticking with carb counting and dose, hypo's and hypers should reduce although you may not be eating the healthiest diet. That's personal choice. They also teach how to deal with alcohol but they don't encourage people to drink.


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[Spiker]

That's because the idea is to Adjust your insulin Dose to Normally Eat rather than to adjust your diet - it's in the even in the acronym; and you are free to apply the DAFNE techniques to whatever you want to eat.

Yep. They don't call it Diet Adjustment For Normal Endocrinology.

 

[Spiker]

The issue then with DAFNE is whether it is good enough; it does some good and is clearly better than nothing but why can we not demand more? The core issue for diabetic complications is whether your HbA1c approaches normal levels or not; that is very clearly set out in the DCCT, I think the 'good enough' view of an HbA1c of 7.0% leaves so many diabetics on a direct heading for the full gamut of complications. They might get them a few years later than their brothers and sisters with HbA1cs of 9.0% but get there they will.

I think your statement that wondering whether "going below 7% is a good idea or indeed possible for some" is frankly bizarre though; if you have an HbA1c of 5.7% why shouldn't we all? I know your statement follows the view of most the HCPs I meet but again we need to ask whether that is good enough - I don't think it is.

Looking at it from the NHS's point of view, HbA1c is only one of their targets, and the evidence they are using tells them that the benefits of pushing HBA1c below 7 (or 6.5) are marginal or even negative. So from the NHS's point of view, the NICE point of view, it makes sense for the measurable goals of DAFNE, or any activity aimed at T1s, to be to get HBA1c down around 7, and put probably equal weight on reducing hospitalisations from things like severe hypos and DKA. That would meet their economic goal in terms of economic benefits to the NHS and value for money in DAFNE.

Getting HBA1c below 6.5-7 would be more a personal decision and personal goal for us as T1s I think. The NHS can't even advise us to do it, let alone assist us, when their evidence is suggesting negative consequences below 6% due to statistically increased hypoglaemia risk, which comes with acute hospitalisation and significant mortality risk. I guess I'm saying that, for getting below 6.5-7% HBA1c, we're on our own.

 

[Spiker]

The short answer is that the overlap of the profile of insulin absorption must match the profile of carb absorption. If the overlap is variable, then BG readings will vary.

Brian, good discussion about digestion times. I have struggled with this too.

Dr Bernstein has a good grasp of gastroparesis in diabetics, with the likely causation being autonomic neuropathy. He has tests for it, and some degree of treatment, though it's hard to treat.

I approached my GP and hospital team a number of times to get these done but without success. I got referred to a specialist in autonomic neuropathy at my hospital. His answer, which does kind of make sense, was to the effect that autonomic neuropathy is very hard to diagnose, and even harder to treat, so why bother. Depressing but you can kind of see his point. If you can't treat it, why diagnose it.

I guess the response to different digestion times is to try to match the insulin action curve to your personal digestion time. This might be achievable by injecting earlier or later, but more likely it would (also) need using a less rapid acting insulin. So Novorapid rather than Humalog, or Actrapid, or old regular insulin, or the old mixes. This assumes that your personal digestion time is actually predictable. If it's variable, as it can be with bad autonomic neuropathy, the problem gets even harder to solve. :-(

 

[robert72]

I believe there's a device you can have fitted if gastroparesis is really bad

 

[equipoise]

Maybe it should be renamed Dose Adjustment For Temporary Solutions?

 

[noblehead]

I guess the response to different digestion times is to try to match the insulin action curve to your personal digestion time. This might be achievable by injecting earlier or later, but more likely it would (also) need using a less rapid acting insulin. So Novorapid rather than Humalog, or Actrapid, or old regular insulin, or the old mixes. This assumes that your personal digestion time is actually predictable. If it's variable, as it can be with bad autonomic neuropathy, the problem gets even harder to solve. :-(

That makes perfect sense Spiker to match the insulin to the slow digestion of the food, autonomic neuropathy must be a nightmare to live with and get decent bg control

 

[Spiker]

spam

Spam reported: Link to click bank URL. First time poster. Outrageous claims.

This is the same cheezy link that was being shilled by BenKenzi on Sunday, albeit with a different tracking link. Possibly it's the same spammer. IP block needed?

 

[elvis the cat]

Dose Adjustment For Fixing Your Daily Unknowable Carb Kilos

good old daffy duck

 

[ElyDave]

Thanks, I do appreciate +ve feedback on this, I did feel I was sticking my neck out by raising an issue that I suspect to be more prevalent than is known

I have recently been prescribed Humalog, and if my BG is around 4 or 5 before I eat, I inject Humalog instead of Novorapid (analog), depending on what I eat (e.g. Novorapid would lead to hypo on BG of 4 or 5 before cheese-on-toast). Sometimes I just wait until the BG has gone up and then use Novorapid. I don't think the condition is too bad (how would one know though), but it is variable, and I have an idea of what some of the influences are.

[btw LOL, in control systems, +ve feedback is a bad thing, whilst -ve feedback is good, I'll try to explain this when I eventually start a thread about it. I have thought of a pictorially/hopefully good way of explaing it, and then pictorially try to describe the +ve and -ve feedback variations that we all often face, several times a day]




Yes there is, but it would have to very severe (vomitting food back up). I doubt if it'll ever get that bad in me, and as I say, I suspect it is more prevalent in varying degrees, than is known.

Good luck with that one.

I've been trying to explain positive feedback in terms of climate change to my dad for years.

I may have a few decent diagrams in various textbooks if you like?

 

[mpe]

that's the trouble with attempting to fit symantically good words into an acronym based on someone's mother/wife/daughter (I assume that's how the acronym was dreamed up)

Which would make it a "backronym" anyway.