New DAFNE graduate

[Mumof1]

Hi, I'm Type 1 diagnosed 19 years ago and have recently completed DAFNE. Was blown away by all the amazing information and feel so so happy that now I have all the tools to hopefully make the correct decisions and manage my health better.
I live an active lifestyle and have been lucky enough to have the FreeStyle Libre 2, which has been a benefit to understanding patterns prior to the DAFNE course.
My insulin I take are Novorapid and Tresiba.
Wanted to reach out to one of these forums as after meeting other type 1s through the DAFNE course got so much support and understanding through them, was so nice to speak with other people who actually understood what it was like...
My 10 year old son was also diagnosed this year as Type 1, luckily caught very early so he had no complications and didn't needed to be in hospital overnight. He is actually managing amazing, self injecting, taking his BG and has been since week 1 of diagnosis. His diabetic team are fantastic also.
So my newly learned info can also be passed to him which is fab.
Has anyone else done DAFNE? Be interesting to hear how you've got on.
Also interested to hear from parents and how they have coped with transition of care from primary to secondary school, this is causing me some anxiety atm to be fair!

 

[nonethewiser]

Long long time since did course, well worth it & recommend it to anyone.

Sounds like you got lot from course & made friends along way, well done & well done your lad.

 

[Inka]

Welcome @Mumof1 🙂 I haven’t done DAFNE but I’ve found connecting with other Type 1s to be a huge stress relief.

Sorry to hear about your son’s diagnosis. At least he has an experienced and well-informed mum 🙂

 

[rebrascora]

Hi and welcome

Yes, I am a DAFNE graduate. I so nearly didn't do the course because of the "Normal Eating" part of the title because I follow a low carb way of eating and was worried that it might be of limited use, but so very pleased I did. As you say, mixing with other Type 1s is one of the huge benefits of the course and that throws light on the vast array of different experiences people have with it as well as the similarities. To me one of the big advantages of the course is that you share data and discuss what might work to improve things within the group, so you learn how to solve the problems other people are experiencing as well as your own. That may not be relevant at the time but we all know the goal posts move with diabetes and you may experience those problems in the future. It is also liberating to be in a room of people who all sit down for lunch and get their pens out to inject their insulin. I had been a bit uncomfortable about injecting in public up until that point but I took my cue from the young women in the group who very casually exposed a bit of midriff and injected it without any issue.

I know there are online courses like BERTIE which I am sure is very good, but actually spending time with other diabetics and sharing experiences is one of the big bonuses of DAFNE. Really pleased that has lead you to join the forum here, as it has probably played an even bigger role in my learning process with diabetes than DAFNE and in helping me to cope since my diagnosis. Hope you find it equally beneficial.

 

[eggyg]

I graduated 3.5 years ago after many years of nagging my DSN to send me on a course. It really was the best thing I’ve done. It was intense, five full days, just me and three blokes, but we all got on and I think we all learnt something from each other as well as tons from DAFNE itself. I was always petrified of corrections or making basal changes but they made it so simple to understand. I’m now so much more confident about it all. Anyone who gets the chance please, please do it. It’ll change your life, for the better.
I’m so glad @Mumof1 that you got so much out of it and can now pass on that knowledge to your son, he’s a very lucky boy.
I will tag a couple of parents to try and answer your question re school.
@Sally71 @stephknits

 

[rebrascora]

@eggyg Yes, gaining "confidence" to make adjustments particularly to basal insulin was one of the key benefits for me too.

I also think that having done DAFNE you stand a better chance of getting support for new tech to help manage your diabetes. I am sure they said yes to Libre for me as a result of being a DAFNE Graduate and at least two of the people on my course got pumps within a few months of completing the course, because the trainer identified problems with their diabetes management which a pump would benefit and because they are DSNs they can change prescriptions and share their views with consultants, so it can be a foot in the door to that sort of thing.

 

[Mumof1]

Thanks guys, yes definitely feeling way more confident and happy which is obviously important for me but also super beneficial for my son. His diagnosis this year definitely spurred me on (after the emotional breakdown)to have all the knowledge and as many answers that I can have and I definitely feel the DAFNE course has helped with this.
Hopefully that I can bring my HbA1c down a tad too (always my goal)!!
Agree with @rebrascora about getting the access to tech and other little bonuses too my diabetic team have been amazing and I'm so pleased my new GP specialist nurse referred me to them.
I had the info for DAFNE online forums but didn't find that many threads so came and joined this one instead!!
Our DAFNE course was actually done online, we met up weekly via teams and had some home learning online and with textbook for 5weeks, the 3 of us that were on it have our own little what's app group which has been so great and your right you can have the tools to see patterns in other people's info which then I found gave me better clarity to identify what was happening with me. I've now been 2 weeks without hypo and spending 86% of my time in range via my freestyle libre (woop woop)!
Be great to have links to school changes thanks so much @eggyg

 

[martindt1606]

Have lived life according to DAFNE for nearly 10 years, whilst every day may not be perfect at least I have the background knowledge to understand why and therefore not overstress.

 

[everydayupsanddowns]

Welcome to the forum @Mumof1

Glad you got so much out of DAFNE - it can be a huge breakthrough for so many, and gives lots of proven strategies for dealing with the vagaries of pretending to be your own pancreas!

Sorry to hear about your lad’s diagnosis - but great that you will be able to pass on the information you’ve learned. He sounds like he is getting on brilliantly.

Look forward to hearing more from you over the coming weeks and months. 🙂

 

[Sally71]

Golly it’s been 4 years since my daughter transferred schools, i have to say though it all went much better than anticipated! Just make sure you get in touch with the school as soon as they have invited your child for the induction days. DSNs can help visiting/talking to schools if you have any problems but in our case I was able to sort it all out myself. I emailed the enquiries address stating that my daughter would be attending the induction days, please pass the following information to any staff who will be with her during those days (then listed VERY basic hypo information/lunch time procedure) and that I would sort out a proper care plan before she started in September. Had a reply within a couple of hours from the teacher who would be her head of year, all very helpful. They had had diabetic students before of course but maybe not with a pump! There was also a school nurse there at the time who was very businesslike, introduced herself to my daughter on the induction day and basically told me how they deal with diabetic students at lunch time!

I had done various updates of the care plan whilst she was at primary school so just did a new one for secondary myself, did run it by the DSN but she’s quite happy to let me get on with things like that myself. At that school they have a procedure whereby my daughter is let out of the last morning class a few minutes early, goes to the medical room to do her insulin (the school like to keep their own file of her BGs and so on, I didn’t ask them to do that!), then she goes to the dinner hall before everyone else gets there to get her food. The cook emails me the menu every Friday, I send back my daughter’s choices and then the cook reserves them so that we can carb count and make sure she gets exactly what she has ordered and bolused for. I think we’re lucky there though, that the cook is very helpful and seems quite clued up about diabetes, I don’t know of any other schools who do that! You should be able to come to some arrangement though. My daughter says now that she finds all the going to medical room palaver a bit of a nuisance and would quite happily just sit at the dinner table and do her bolus (easier with a pump and sensors because you don’t have to use any needles). I’d rather the staff were a bit over-cautious about it than not caring though.

The only issue we had early on was that some teachers wouldn’t allow students to have their bags in the classroom, I had explained in the care plan that my daughter needs her test kit and hypo treatments to hand and shouldn’t have to leave the room or be walking around looking for them, but then she came home one day and said while they were having PE the teacher had made everyone leave their bags in the changing room and had locked the door so that no-ones possessions could get stolen. Fair enough for everyone else but not for my daughter!! So I emailed the head of year explaining that she must be allowed to have her bag nearby, either in the same room or could she not have it outside at the edge of the field for PE, and once I’d raised the issue it all got sorted out within 24 hours so that was OK. Sounds like a bit of a misunderstanding or some teachers not connecting the information they’d read with the child!

In the end she seemed much more comfortable with her diabetes at secondary school than she ever was at primary, and from what I’ve heard the staff there seem much more clued up/sympathetic to it than they were at primary, so for us it was a good change. Maybe we are lucky with the school, she has other problems as well now and they are really looking after her, all schools should be like that though! Hope it all goes well for you 🙂

 

[Mumof1]

Hey @Sally71 thanks so much for reaching out.
Wow, I can only but hope his transition to secondary school is as great and well supported as your daughters has been.
Unfortunately even in his primary school the school kitchen wasn't prepared to work with me to make sure I could efficiently count his carbs for him so he just has packed lunches now, he says he doesn't mind but it was really disappointing that they didn't really "get it" and weren't happy to support us in the way I wanted but as parents we adapt and luckily my son has adapted too❤!! The rest of the support at his primary school has been fantastic thou he will be due to go on his year 6 trip next year for 5 days and have already liased with them to do some additional training and some carb counting training which they have been happy to do.
It was really helpful to have your insight. I was diagnosed when I was 15 but was on mixed insulin then so only injected twice daily and didn't carb count so never injected at school, so can't even rely on my experience for this really...
I won't find out which school he will go to next year yet but will definitely be liasing and seeing what the care plan will be (or just moving and enrolling him at your daughters school who seem to have nailed it)!!

 

[stephknits]

Hi, I have done DAFNE myself and also have a child who is type 1. They are 17 and diagnosed at 16, so can't help with the transition. Am so glad I did Dafne as it has really helped me teach my 17 Yr old what to do,without it being just my opinion. Best of.luck with the schools, I think that bit is such a big jump, but hopefully, with the schools being much bigger, they might well have other type 1s there and have some experience.