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Clinic yesterday

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C

Carynb

Well-Known Member
Relationship to Diabetes
Parent of person with diabetes
J had his second clinic appointment yesterday, his HbA1c was 7.7% so very happy with that but it's flipping hard work!!!!
They still won't do carb coutning with us,grrrrrrr. said next time when we go back they will have another look at his ratios. I told them I was starting to teach myself- a few stern looks from them but tough!!!
I don't understand why they don't just teach it fron day 1 even if the insulin needs are too low to calculate at least you still have the principle of carb counting from the start...
Anyway I'm very proud of my little boy as he works hard at his Diabetes too, bless him.
C 🙂
 
That's a fantastic HbA1c! We're still working on getting F's down from 9.1.

Their attitude to carb-counting seems very odd. We were taught from day 1, and I know other parents were. It's standard procedure at our hospital that as soon as a child is diagnosed with type 1, the dietitian comes round to speak to the parents.

Well done to J. He's doing SO well!
 
Great results Caryn, it is hard work but by doing that you are doing great things for your son and his future health.

Keep going with the carb counting. One friend I had her daughter's ratio was 1 : 20 for a long time and was having silly units for food and this girl was is 10 years old. She has been carb counting even though they don't do it down here where we live either, but that is because they are rubbish !!

My personal thoughts about your team are too strong a words to put here and I would definitely get told off but lots of people. What planet are they on, as it is not the planet of good diabetes care, that is for sure.

Carbs play such a huge part. I always say to people that your team are there to work for you and you do not have to believe everything, you definitely have to question everything. How do you know they are right?

So well done and keep going it. I think we can start a new club actually called 'knackered mums' or something similar 🙂
 
Kei said:
That's a fantastic HbA1c! We're still working on getting F's down from 9.1.

Their attitude to carb-counting seems very odd. We were taught from day 1, and I know other parents were. It's standard procedure at our hospital that as soon as a child is diagnosed with type 1, the dietitian comes round to speak to the parents.

Well done to J. He's doing SO well!
Click to expand...

Hiya

If I'm right I'm thinking that your children are on twice daily mixes. I may well have said this before as I know I repeat this lots and lots to lots of different people so apologies if I have already said this too you. You will not get anywhere near decent levels on mixes and don't let your team tell you that you will. No amount of carb counting will get you out of that one either. The sooner you get your team to wake up and smell the roses and get your children on to MDI, the better you will make their future chances of less complications.

Sorry, that isn't meant to sound harsh but I feel so strongly about that. No decent team in the UK puts children onto twice daily, whatever their age. :(
 
Adrienne said:
Hiya

If I'm right I'm thinking that your children are on twice daily mixes. I may well have said this before as I know I repeat this lots and lots to lots of different people so apologies if I have already said this too you. You will not get anywhere near decent levels on mixes and don't let your team tell you that you will. No amount of carb counting will get you out of that one either. The sooner you get your team to wake up and smell the roses and get your children on to MDI, the better you will make their future chances of less complications.

Sorry, that isn't meant to sound harsh but I feel so strongly about that. No decent team in the UK puts children onto twice daily, whatever their age. :(
Click to expand...

Thanks Adrienne. Yes, you have mentioned it many times to me in the past.

At the moment, with two children who are fairly newly-diagnosed and one 21-month-old, I'm finding mixes work well for us. I don't know what you call decent levels, but last week both children were between 4 and 7 for the whole week, with just 3 hypos between them. Not bad, I'd say!

J is currently only doing the mixed insulin in the morning, with a fast-acting after dinner at a rate of 25:1 carbs to insulin. He's doing well.

I know MDI will be in our (probably fairly near) future, but I'm grateful that the team did put us on mixes for a start, because it has enabled us to get two small children gradually used to the injections without traumatising them with multiple jabs each day.
 
Great HBA1c 🙂 you should be very proud of J x

... and Kei fab numbers hun 🙂 x
 
I'm definitely in Adriennes camp here.

We carb counted from day 1 and on MDI. It has worked amazingly for O, and his HBA1C results have been brilliant, 12.1 on diagnosis, 9.6, 5.4(!) and the last one was 6.1.
We have come out of honeymoon now, and we are more exact now with our ratios. He tests 4-5 times a day and BG is usually within target. We rarely have to do corrections ( and if we do, I usually know why!!) and I cant remember the last time he had a low, I think it was one breakfast time last week, and even that was only about 3.5.
So I am a huge fan of carb counting, and can talk for hours about it, and I know I still have loads to learn.
However, that said, we have to do what works at that time, and if a childs levels are good and HBA1C is within target while on twice daily jabs, then thats ok too.
The thing I have learnt with diabetes is to stay flexible and that hings change on a daily basis - what worked yesterday may not work tomorrow!:confused: We always need to be open to new suggestion.
 
Kei said:
Thanks Adrienne. Yes, you have mentioned it many times to me in the past.

At the moment, with two children who are fairly newly-diagnosed and one 21-month-old, I'm finding mixes work well for us. I don't know what you call decent levels, but last week both children were between 4 and 7 for the whole week, with just 3 hypos between them. Not bad, I'd say!

J is currently only doing the mixed insulin in the morning, with a fast-acting after dinner at a rate of 25:1 carbs to insulin. He's doing well.

I know MDI will be in our (probably fairly near) future, but I'm grateful that the team did put us on mixes for a start, because it has enabled us to get two small children gradually used to the injections without traumatising them with multiple jabs each day.
Click to expand...

Whoops sorry, won't mention it again then.

What I call good levels is the HbA1c which is 9.1 and this indicates that the numbers inbetween when you are testing are way way too high.

People have found it is more traumatising changing the children to MDI after starting with twice daily than to have started with MDI, as they know no difference.

In Europe and the USA they don't do mixes anymore, they do pumps or MDI. We have the worst results for HbAc1's and that is due to the mixed insulin and lack of carb counting (which I know you do).

I'm not having a personal go at you at all, so please don't take it like that, I just know the facts which I can't and won't lay out for you as that is not my place. I just know that all children should not be on mixes at the start of their diabetic journey. The good levels that can be achieved at this early stage is such a huge part of their future health, when they hit teens it goes haywire but hopefully by giving them the good start we have done our best to avoid the complications, if you see what I mean. This was a study that was done.

I'll not mention it again, I promise. 🙂
 
Adrienne said:
What I call good levels is the HbA1c which is 9.1 and this indicates that the numbers inbetween when you are testing are way way too high.
Click to expand...

That was a couple of months ago, and was only her second clinic visit, after a 3 month period that included a long diarrhoea and vomiting bug. I'm pretty sure the next one will be a better number.

Anyway - let's not hijack this thread. I'm so glad that Caryn's J is doing so well, especially such a short time after diagnosis.
 
Of course, you are right, Caryn and J are doing fab.

Here's to a good result for you and your children next time then which it should be with results like you have been getting. I can only wish for constant results like that. We never had the honeymoon at all. We went from birth to no pancreas 😱
 
Wow Caryn that is amazing after such a short amount of time! Brilliant in fact!

Alex was diagnosed a year ago and had an awful 12.7 on diagnosis then 8 then 9.6 (this was the reason i begged for a pump as i didnt want all the damage being done because MDI wasnt working for us) - then 6 months after being on the pump he is 7.1 - and i realise this still isnt great - but its heading in the right direction - i would love to get him in the 6% club. I feel so scared of the damage that has been done already with the 9.6 - i always ask him if he can see ok - poor boy!😱

Kei, I do understand how much hard work it must be for you with 3 little ones to look after and the injections etc. I have to say though that our team are trying to get the last remaining children off mixes as i dont think they work very well for most children. Alex went straight on to MDI and i am really grateful that he did as it does seem that mixes can cause hypos late morning and then high's early evening. I suppose it really depends on the child - i have heard of 1 child who had a great hba1c of 6.5 i think and she was on mixes - but mostly it seems to be the case that most children are moved very quickly onto MDI and things tend to improve quickly after that. I suppose it will depend on future hba1c's and whether its coming down a bit.🙂But its great that you carb count - it does seem odd to me that some people are put on insulin without carb counting - i just cant imagine not carb counting - but then we started doing it 2 weeks after diagnosis so its probably more that we are used to doing it this way.🙂Bev
 
Hya caryn, well done to you and J!! xx
 
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