[diabetes] DAFNE - anyone done it?

tbh

Hello hello - I was at the specialist this morning, got my bloods back - not great at 8.9 but as I've been travelling a lot, I kind of expected it. Anyway, the doc said he was going to enroll me on a DAFNE (Dose Adjustment for Normal Eating) course - details here: http://www.dafne.uk.com/

Has anyone done one before? Any experiences? I don't know when I'm due to start, but I'm looking forward to it..

robinph

Never done a course on it, but I thought that was aproximately what I have always done anyway. I don't do it very well admitedly but I have always been changing my doseages around depending on what I'm doing, eating or forgotten to do.

I'm already doing most of what they say on the "What is DAFNE" page, apart from testing enough. They have had me doing the 2 injections of Lantus for a few years now, but the reasoning behind that change was that the one dose didn't actually work evenly enough throughout the 24/ 36 hours for me. Or it was that it was working too evenly but because I was alseep for part of the 24 hours that was actually too much, I cannot remember exactly now though.

tbh

yeah, I thought that as well - I'm kind of doing it anyway - but i think this is like applied carb counting - the story the doc gave me was that at the moment, I'm kind of fitting my lifestyle around my diabetes (although I think my HB1AC would argue with that!) but this was like fitting diabetes into my lifestyle. I'll let ye know how it goes anyway, although no idea when I'm going to do it yet...

robinph

I certainly don't think anyone would accuse me of trying to fit my lifestyle around my diabetes, more like my life carries on regardless and the diabetes pops in every now and then to anoy me a bit. But my HbA1C numbers are probably not too far off yours either so maybe they'll be trying to bring in somthing more structured with me on my next service as well.

mike65

Interesting but its what I'm doing already for the most part (only one long dose of acting insulin does though).

My HB1AC is about 5.3 so I'm happy enough and I feel perfectly fine in myself.

Mike.

tullie

mike65 wrote: »

Interesting but its what I'm doing already for the most part (only one long dose of acting insulin does though).

My HB1AC is about 5.3 so I'm happy enough and I feel perfectly fine in myself.

Mike.

First off congrats on the HBA1c mines 8.9 at the mo. I did DAFNE a few weeks ago and well have mixed feelings about it. I did it simply because I want an insulin pump and in Beaumont you have to do DAFNE to get it.

The course is basically an education in dealing with diabetes and carbohydrate counting. It is great for people who have just been diagnosed or people who have had it for years but didn't educate themselves about diabetes for whatever reasons.

For me it was a week of my time wasted as there was nothing new in it for me and I've had diabetes for 19 years. I really believe it is the diabetics responsibility to educate themselves about the diesase and have always tried my best to get the blood sugars right. Not succeeding lately mind you. But if you don't feel confident in managing your diabetes of are wondering about the complications or worried about the genetics etc it is def worth while.

LegacyUser

im only after doing this course with my husband .it is a great course to do .i found my husbands sugers were always up in the 20 and now he has then down under 10 which is great and he can also eat what he want as long as he counts what crabs is in whatever he eats. he can even have aa slice of cake or some chocolate now.i would recomend this course to any with type on diabetes ,

niamh.brady

Hi guys,

Just wondering if anyone has done the DAFNE course - particularly if they are attending UCHG as I am getting referred to UCHG (to Sean Dineen I think) and I wanted to get some feedback on what the clinic is like, how hard or easy it is to get on the course and what happens on it.

Thanks

tbh

Hi Niamh -

waiting (a while) to do it myself.

g'luck, and if you get there first, let us know how you got on.

blackrhythms

I have just completed the DAFNE course and found it to be amazing! It sounds simple in theory, and it is, but it is basically re-education on what you thought you already knew. I thought that I was already matching my insulin to what I was eating, but the fact of the matter is - I wasn't - I was way off!

It's a fantastic course and for anyone offered the chance to do it, I would say jump at the chance. For the first time since my diagnosis in 1990, I feel in full control of my diabetes, rather than letting it control me! Being able to eat what I want, when I want, or even for that matter, choosing to skip a meal without fear of a hypo is just fantastic! I honestly cannot recommend it enough!

mike65

Intrigue, can you outline the method?.

blackrhythms

It's as simple as counting carbs and matching your insulin to suit. First off tho is getting your background insulin down to a level where you can actually skip a meal without going hypo, then you have to work out the ratio of Carbohydrates:Quick Acting Insulin that works for you - i.e. keeping your levels between 5 & 7. (Note those levels vary throughout the day). So you're weighing and measuring your food and checking labels to see how much CHO is in what you're about to eat - both in your food and drink, until you are familiar enough with the portions. You're also factoring in how active you are at that particular time of day, or how active you expect to be. So it doesn't matter what you eat, once you count in the carbs in it. It's also about being aware of High Glycaemic Index carbs and Low Glycaemic Index Carbs and how that energy is used in your body!

Over the week, the topics covered are: What is diabetes, Types of Diabetes, Metabolic Control, Insulin, The DAFNE approach - food and insulin, Hyperglycaemia, Coping when you are ill, Hypoglycaemia, Physical Activity and Exercise, Setting Goals and Action Planning, Annual Review and then covering, Footcare, Travel, Driving and Pregnancy.

It's an intensive week, but such an eye-opener. Things I thought I was fully aware of, it turns out I had been very poorly educated on!

mike65

That reminds me a bit of when I was diagnosed in the late 70s, I learned that a Weetabix was worth "15 carbs" as was a a slice of bread etc.

blackrhythms

That's it, bang on - the way to count carbs hasn't changed - matching your insulin to suit what you eat has! No such thing as you can't eat X because of it's high sugar content anymore, and no such thing, either, as having to eat at certain times of the day!

atmmusa

how can I participate in DAFNE?? Do I need to pay for it?? I'm reading the website but still not sure..

tbh

you need to get a referral from your specialist

LegacyUser

blackrhythms wrote: »

It's an intensive week, but such an eye-opener. Things I thought I was fully aware of, it turns out I had been very poorly educated on!

I totally endorse everything Blackrhythms is saying about DAFNE. I've been insulin dependant for the last 30 years and have gone through every type of new insulin, pump, pens, diet etc. I thought DAFNE would be a refresher course with maybe a few new developments thrown in. I was so wrong. Its been by far the best thing I have done since I became a professional full time diabetic (as opposed to the part timers :-)).
Before DAFNE my HBA1c's were ok - some good, some not so good. I consider myself active and have never let diabetes stop me from doing anything. However it was not until I went through the full week programme that you see how bad the traditional diabetes approach is. For example and this turns out to be very common - I was overdosing my insulin by 20 -30% every day and then having to top up with snacks to counteract lows.

Doing the proper DAFNE programme basically re-engineers your complete insulin regime and gives you a credible but highly practical and pragmatic approach to eating, exercise, sick days, nights out and basically life in general. As I said earlier I have tried and abandoned many approaches over the years but this approach is simple but radically different from anything else. I have been following the DAFNE approach now for nearly two years.
A word of warning though - DONT TRY AND TEACH YOURSELF DAFNE. It really does require the full weeks programme in your diabetic clinic as they radically reengineer your insulin regime and to make it work you need this expertise to help and assist you.

Ireland is actually way ahead of many countries with supplying diabetics with the medication they need, but this is the first time ever that I was given a methodology to use insulin properly. I did some triathalons last year for the first time. I could have done them pre-DAFNE but using the DAFNE programme made it so much easier. And enjoyable. Overall my mystery highs and lows have disappeared and I am now in complete control of my diabetes.
I cant recommend the programme enough - my consistent and reduced HBA1cs prove this but just as important my 24/7 quality of life is on a par if not better than a non-diabetic.

My biggest regret is that I did not have the opportunity to do this 30 years. I know I have gone on a bit and risk sounding like a fundamentalist born again diabetic but every diabetic should/must give DAFNE a go.

tbh

thanks for that Eddied, great post.

atmmusa

hmmmm.I asked about it in Mater and they told me they didn't do DaFNE. They offered me ''BURGER'' (BERGER?) instead <lol> telling me it's the same but im not too sure<?> has anyone heard about it? there doesn seem to be anything on the web.I am a bit disappointed, should I change the Hospital?

stinkybum

Hey there - glad i found this thread.
I started the DAFNE course on Monday and wasnt able to go today cos my daughter got really ill and i had to take her to the doctors. I've had to forgoe my place and i'm gutted about it but i'm hoping to get another place soon as i really want to get a pump.
As far as i've been told by friends, F*&TH (in the mater) doesnt offer the DAFNE. He doesnt advocate the pump very much either.
From what i've learned in one day on the course is so much better than what i was told when iwas diagnosed 10 years ago. The eduction i had was DREADFUL and as much as i did research and read up on carbs etc, to have someone who has put it into practice help me work it out was brilliant !! Its not just how much insulin to carbs but its also seeing patterns in your levels and how to adjust when you have a run of highs or lows.

As regards an a1c of 5.3%, i'd hate that. You'd need to be low most of the time to achieve that !! I had an a1c for 5.5% at one point during pregnancy and i was literally teetering on hypo the whole time. It was horrendous and it would be impossible for me to take the risk of running so low for so long with a toddler to mind. Ugh !! I upped it to 6.2% and although they werent happy, i was safer to be around.

I had an a1c of around 6.5% for years but it all went pete tong when i got ill and i lost my way. God i hope DAFNE helps me get back on track.

philten

Hi stinkybum, how did you get on the DAFNE course? I attend the mater but have neglected to make another appt with the Diabetic clinic as not too happy with it in there and thinking off changing to tallaght maybe. If the mater don't do it might make my decision easier

stinkybum

I dont know for sure that they dont do it, i'd just be very very surprised - they've always poo-poo-ed the idea.
I got on the DAFNE course by asking at my clinic - i went through my consultant initially but they are bloody brilliant in Beaumont. the girls in the clinic are fantastic and i have a whole heap of respect for them.
I'm gasping to do the course now as i've had a bit of a taste of it and i just really want to totally understand it and get cracking.
Good luck.

1967

As someone who was diagnosed type 2 christmas eve 2007 woke up in intensive care 3 days later to be told i was diabetic and that i had died my blood sugars were 96.4.I am on Byetta and was wondering if anyone else uses it as you dont adjust dosages or anything like that its a fixed dose everytime.

stinkybum

1967 wrote: »

As someone who was diagnosed type 2 christmas eve 2007 woke up in intensive care 3 days later to be told i was diabetic and that i had died my blood sugars were 96.4.I am on Byetta and was wondering if anyone else uses it as you dont adjust dosages or anything like that its a fixed dose everytime.

Hey there - you might get more responses if you start a new thread. teh DAFNE course is specific to type 1 diabetes and me, for one, doesnt know much about T2. Sorry and good luck with the Byetta - i hear the s/e can be a bit rough.

graflynn

I cannot believe that I stumbled on this thread!!! I have been searching for an online type 1 diabetes community for about two years now.

Anyway, I was trying to gather information to have DAFNE implemented in the Diabetes Clinic in Limerick and came across the official DAFNE website. It lists all the centres that run it in Ireland.

The reason more centres don't provide it is because it take a bit of money to set up and maintain. I assume in the long run the clinics will save money because after completing the course you only have to attend your clinic once a year unless you run into problems (wouldn't it be fan-flippin-tastic to not have to be trekking to the clinic 4 times a year).

So, I contacted the Diabetes Federation of Ireland to get some info on how to make this happen in Limerick - there are only 2 Dafne centres outside of Dublin, which has 3. I got some of the info and I'm ready to take on the next step. I'm hoping that there are more people like me who see something that's going to improve their life, that they deserve and others deserve and go for it?

tbh

fair play Gra! and welcome to boards

niamh.brady

Hi guys,

I don't know where all the old DAFNE posts have gone, but I've searched and can't find one so I am starting another one.

I moved to the diabetic clinic in UCHG last month and, as hoped, they put me on the waiting list for DAFNE. I was advised that the wait list worked out as an 11 year wait!!!! 2 weeks later I got a call with a cancellation appointment so I am doing the course at the end of the month (July 27th).

I know that it is full time over 5 days (and have checked all the websites), but can anyone offer more insight into what happens, what is discussed, expected etc? Has anyone whose done it found a huge improvement in their management?

Thanks

graflynn

Hi Niamh,
Congrats on getting on one so soon. I know a guy who did his in February and he just raves about it. The first thing they do is sort out your long acting insulin (this may involve a basal rate test - nothing too worrisome). Then they start at the beginning with the basics. They go through carb counting, finding your insulin to carb ratio for each meal, how to handle excercise, alcohol, etc.

This may sound very basic but they do tailor it to each individual plus you get to meet other type 1's face to face. And the bonus for me would be that you only have to attend the clinic once a year afterwards - unless you want to.

Good luck and let us know how you get on.

Grainne.

niamh.brady

graflynn wrote: »

Hi Niamh,
Congrats on getting on one so soon. I know a guy who did his in February and he just raves about it. The first thing they do is sort out your long acting insulin (this may involve a basal rate test - nothing too worrisome). Then they start at the beginning with the basics. They go through carb counting, finding your insulin to carb ratio for each meal, how to handle excercise, alcohol, etc.

This may sound very basic but they do tailor it to each individual plus you get to meet other type 1's face to face. And the bonus for me would be that you only have to attend the clinic once a year afterwards - unless you want to.

Good luck and let us know how you get on.

Grainne.

Thanks Grainne, I'm very excited. I think that I got on so soon as it is Galway Races week and noone wanted to be driving into and out of Galway city that week, but I don't care about how long it takes once I'm on it.

5 full days of learning so it must be very intensive. It would be great to know once and for all how much insulin I need - on my first appoint. with the clinic they couldn't believe that I'd been put on so much long-acting and so little short-acting before and advised that changing this should give me better control over my sugars and my weight - so yipee alround!

graflynn

I'm excited for you too! I'd give a lot to be going on a DAFNE - aaahh it's the simple things in life that us diabetics want

I'm trying to campaign for DAFNE to be adapted in Limerick but with cutbacks in the HSE, it's difficult. I think there should be a similar programme in every clinic in the country not just the chosen few.

A huge step in this campaign would be if more people with diabetes knew about these programmes and started asking for them - power to the people and all that. If you could, I know this might be impossible but, if you could post a day by day account of what you learned on the course, it might encourage more people to get in on the action.

BTW are you from the Clare side of Galway or the other? I live in Clare!

niamh.brady

graflynn wrote: »

I'm excited for you too! I'd give a lot to be going on a DAFNE - aaahh it's the simple things in life that us diabetics want

I'm trying to campaign for DAFNE to be adapted in Limerick but with cutbacks in the HSE, it's difficult. I think there should be a similar programme in every clinic in the country not just the chosen few.

A huge step in this campaign would be if more people with diabetes knew about these programmes and started asking for them - power to the people and all that. If you could, I know this might be impossible but, if you could post a day by day account of what you learned on the course, it might encourage more people to get in on the action.

BTW are you from the Clare side of Galway or the other? I live in Clare!

I'm living in Ennis. Had attended Ennis and Limerick clinics but was advised by so many people (within the hospitals) to move to the clinic in Galway that I got myself referred. Before moving to Clare I attended St James' and all 4 hospitals have been so different. Some really showed very little worry about potential side effects and high hba1c's. Galway is brilliant.

I do agree though that the course should be everywhere but I think there is a lot of staff training involved and of course the people need to want to teach the course. With so many short-staffed clinics these days its no wonder they haven't gotten any further in adding any more DAFNE centres.

I won't have my laptop with me the week of the course - I'm staying with family in Galway as the commute on race week would be crazy, but I will post the weekend after to give summaries on what we did each day.