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hba1c 10.5

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This thread is now closed. Please contact Anna DUK, Ieva DUK or everydayupsanddowns if you would like it re-opened.
M

MrsBoyle

Well-Known Member
Relationship to Diabetes
Parent of person with diabetes
Dylans been clinic today and his hba1c is now 10.5 and was 8.5 6 months ago.
The consulant wants us to work towards making Dylan have daily hypos.
said if he isnt having a hypo he isnt having enough insulin.. 😱

Surly this isnt right. My cousin has been in a coma from having a hypo so why would our consulant want us to chance that with children.
 
I usually have a mild hypo every few days, and this ensures me that I am getting enough insulin.............

I would agree that it is a bit risky with young kids who could panic at hypos......

What does the blood glucose records say...............does dylan have hypos at any time.....
 
He's said there is no limit to the amount of hypos he can have as long as he does not get confused. He also said he needs more insulin and it doesn't matter if he has a hypo.

So his care is, give as much insulin as Dylan needs no matter how many hypos he has per day. Dylan has been 1.6 before, as my wife said, her cousin went in a coma with just having a reading of 1.8.

Surely this can not be right way to treat him?
 
This sounds like worrying advice to me. It might be worth speaking to your DSN to get some more information.
As adults it's usually accepted that 2-3 mild self treated hypos a week is acceptable with good control. But daily hypos for a child doesn't sound very safe to me.
 
MrsBoyle said:
Dylans been clinic today and his hba1c is now 10.5 and was 8.5 6 months ago.
The consulant wants us to work towards making Dylan have daily hypos.
said if he isnt having a hypo he isnt having enough insulin.. 😱

Surly this isnt right. My cousin has been in a coma from having a hypo so why would our consulant want us to chance that with children.
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WHAT?????????!!!!!!!!!!!!!!!!!!😱

Move to another team now - this Consultant is giving you dangerous and possibly life-threatening advice for your little boy. He sounds to me as if he wants the hypo's so that the hba1c improves as it 'averages' the levels out.

I cant remember what regime Dylan is on - is he on mixed insulins or on MDI (Novorapid and Levemir). If the hba1c has gone up so much then there is something very wrong with the regime Dylan is on - not because of your bad management at all - simply because it sounds as if your team are not good and havent been able to offer you any advice to get the levels down. 10.5 is very high and I would be worried about it - but the answer is in your hands - move to a better team now. All you have to do is to ask your GP for a referral and under 'patient choice' they have to agree. Then do some homework and find out what teams are 'good' teams - teams who are pro-active in the use of pumps are always forward thinking and will give you much better advice than this. Dylan deserves better.🙂Bev

p.s. Are you sure the Consultant wasnt trying to say bring levels down in general to avoid being hyper and wasnt meaning to induce hypo's.
 
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bev said:
WHAT?????????!!!!!!!!!!!!!!!!!!😱

Move to another team now - this Consultant is giving you dangerous and possibly life-threatening advice for your little boy. He sounds to me as if he wants the hypo's so that the hba1c improves as it 'averages' the levels out.

I cant remember what regime Dylan is on - is he on mixed insulins or on MDI (Novorapid and Levemir). If the hba1c has gone up so much then there is something very wrong with the regime Dylan is on - not because of your bad management at all - simply because it sounds as if your team are not good and havent been able to offer you any advice to get the levels down. 10.5 is very high and I would be worried about it - but the answer is in your hands - move to a better team now. All you have to do is to ask your GP for a referral and under 'patient choice' they have to agree. Then do some homework and find out what teams are 'good' teams - teams who are pro-active in the use of pumps are always forward thinking and will give you much better advice than this. Dylan deserves better.🙂Bev

p.s. Are you sure the Consultant wasnt trying to say bring levels down in general to avoid being hyper and wasnt meaning to induce hypo's.
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No, the Consultant said what i said above, i made him repeat himself. Dylan is on mixed insulin, 2 a day.

Today we had both the DSN and to me, the main one was making it out like it's our fault. She even said we are testing his sugar levels to much. They don't listen to us when we say he is high, and acting out. We had to make them train up school up because when Dylan high or low, he gets very naughty at school, hits, etc..

Dylan can never get a good day or week, he is either high or low, if lucky, get one day okay.

Today the Consultant (who is not a diabetologist) told us to up his insulin in the day by 2 units, i told him that he will get hpyos at school, he said tuff they will have to deal with it. The school already deal with it but it's not the point, point is nothing working and we've seen the Consultant i think 4 times, each time he's tells us its not good control.

But today they made me feel like its our fault which has annoyed me.
 
MrBoyle said:
No, the Consultant said what i said above, i made him repeat himself. Dylan is on mixed insulin, 2 a day.

Today we had both the DSN and to me, the main one was making it out like it's our fault. She even said we are testing his sugar levels to much. They don't listen to us when we say he is high, and acting out. We had to make them train up school up because when Dylan high or low, he gets very naughty at school, hits, etc..

Dylan can never get a good day or week, he is either high or low, if lucky, get one day okay.

Today the Consultant (who is not a diabetologist) told us to up his insulin in the day by 2 units, i told him that he will get hpyos at school, he said tuff they will have to deal with it. The school already deal with it but it's not the point, point is nothing working and we've seen the Consultant i think 4 times, each time he's tells us its not good control.

But today they made me feel like its our fault which has annoyed me.
Click to expand...

I dont think mixed insulins are working for Dylan. Have your team offered you MDI and carb counting yet.🙂Bev
 
MrBoyle said:
...Today the Consultant (who is not a diabetologist) told us to up his insulin in the day by 2 units, i told him that he will get hpyos at school, he said tuff they will have to deal with it. The school already deal with it but it's not the point, point is nothing working and we've seen the Consultant i think 4 times, each time he's tells us its not good control.

But today they made me feel like its our fault which has annoyed me.
Click to expand...

I can't begin to say how atrocious I think this is! Very sorry that you and your wife are being made to feel as though this is your fault - Dylan is very young and on a regime that is (by all accounts) quite diffcult to get right. I've had a fair few hypos and they are never pleasant experiences, so I shudder to think how I might feel as a very young child being purposely made to have them.

I'm pretty disgusted by this and I think that you should try and get referred to another consultant, and also make an official complaint about this dreadful person's attitude. PALS may be able to help you http://www.pals.nhs.uk/cmsContentView.aspx?Itemid=944

If you are being treated so poorly, it's likely all his patients are and it doesn't have to be that way.
 
bev said:
I dont think mixed insulins are working for Dylan. Have your team offered you MDI and carb counting yet.🙂Bev
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Ni, they don't want someone as young as him on MDI, and each time we asked, its a:

"We'll review his readings in a week and see how they are and go from there."

That week never ends and just starts over again.

We are going to look for another Consultant.
 
I am really shocked that you were given this advice, to me it is just ridiculous. With daily hypos he would become less and less aware of the symptoms which is really not good. How is he meant to concentrate at school with all the hypos?
Unbelievable, I am so angry on your behalf.
 
MrBoyle said:
Ni, they don't want someone as young as him on MDI, and each time we asked, its a:

"We'll review his readings in a week and see how they are and go from there."

That week never ends and just starts over again.

We are going to look for another Consultant.
Click to expand...

Dylan is not too young at all - I know of lots of children aged 2 who are on MDI - so that is also not good information. You have made a good decision about moving to another team as this one just doesnt seem to know a lot at all.:(🙂Bev
 
rachelha said:
I am really shocked that you were given this advice, to me it is just ridiculous. With daily hypos he would become less and less aware of the symptoms which is really not good. How is he meant to concentrate at school with all the hypos?
Unbelievable, I am so angry on your behalf.
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He's not aware of the symptoms a this time, sometimes he will tell us he is low and he will be but other times its, i'm low now, and will say that for hours and he's not low and he's fine or high.

At the school he doesn't tell them if he is low.

Like i said, the Consultant says he needs more insulin as he's not on enough but today, he had a low before his lunch. How many lows does he want Dylan to have per day, its hard enough trying testing him like we do now never mine try and get more lows.

Just told Dylan that Consultant wants him to have more hypos per day, he nearly cried, make me really angry.
 
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Hi There MrBoyle

How old is Dylan? I am mum to Oliver who is 3. he was diagnosed aged 2 and has been on MDI from the start. I was told recently that the hba1c we had of 7.5 was too low and that it meant ols averages were too low (in other words they wanted it higher to avoid chance of hypo) The doctor was quite insistant that the risk of running abit higher ie. 8-12 was less than the risk of trying to keep to 6-8 and risk hypo as it can be damaging to a young child to have too many. they dont want him having any.

We are actually struggling to keep ols bloods under control and he does swing about during the day alot of the time. We are in the initial stages of looking at getting a pump and have just started carb counting which we hope may help.

Jo
 
Dylans 4 he has been diabetic for just over a year now.

We have got a appointment for tuesday afternoon to see his GP.
 
Oh no, I'm so sorry you didn't get a better result :-( and that advice is madness!! Please don't try it, it is NOT safe!!
Carly's last hbA1c was 10.1 and they said it was a little high, it was nicely stated as I know it is high! so they want Carly to go on 4 a day and carb counting which now I feel is more successful as her level is much more stable BUT she do get bit more hypos than 2 a day. They said they wouldn'y worry if she is at least 3.7, they will worry if its go less than 3.7 so I hope to see Carly's better result on 17th if 4 a day is better and I will let you all know 🙂
 
Dylan's been as low as 1.6 and at school his lowest was 2.5 i think, point is, we've upped it, now got to see what happens. But i telling you, if he gets too many lows and i'm going to tell them to change it right away because its not fair on him.
 
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MrBoyle said:
Ni, they don't want someone as young as him on MDI, and each time we asked, its a:

"We'll review his readings in a week and see how they are and go from there."

That week never ends and just starts over again.

We are going to look for another Consultant.
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Carly is 2 years old and she is on 4 a day in the last 3 months with carb counting and I would say it is successful and her DSN are very impressed with her but I will know the result on 17th to confirm it
 
As has been said, this advice to intentionally give your son hypos is shocking. Frequent hypos can actually make the HbA1c worse because of the rebounds, so it would be counterproductive anyway before you even consider how poor his quality of life would be.

I would most definitely look into transferring Dylan's care to a better team. I would even suggest complaining to your PCT about this advice. Following this advice is only going to do more damage.

MDI would be far better than twice daily injections, and an insulin pump better still. When you find a better team, I'm sure they will switch Dylan to one of the two. In the meantime, though, of course you're going to want to improve control on the regime he is on now - it will be unpleasant for him swinging from high to low.

I was diagnosed at age 3, and was on twice daily injections for about 6 years. My control was very good, but there was a price to be paid for this - my parents were very, very strict about what I ate when. The only thing that worked for them on this regime was routine - exactly the same amount of carbs at exactly the same time for breakfast, mid-morning snack, lunch, mid-afternoon snack, dinner and supper. For example, 30g of carbs for breakfast at 8am every day, 15g of carbs for mid-morning snack at 10.30am every day. Of course this is difficult and far from ideal, especially given that you will have had very little carb counting training from such a terrible team (I'm assuming this is the case?). So my advice to you for the moment is to try and get Dylan to eat roughly the same amount at roughly the same time every day - this will help get some consistency with his meals, and therefore BG. It will be easier to spot highs and adjust doses accordingly.

Hope this makes sense - feel free to PM me if you'd like more detail/advice.

I'm so sorry your team are making things so difficult & confusing for you. I wish you the best of luck in finding better care for Dylan. You will get it, and it will make the world of difference.
 
Hi Becca

Im so shocked at what the consultant has said to you. telling you to let Dyaln have more hypos, how bloody dangerous esp for a little one. I would really consider moving hospitals you can ask your GP for a referall, where do you live and do you live near to any other hospitals? If you do consider moving hospitals ask on the list for advise lots of the other mums have done it.

Im shocked i dont know what to say. If it was me i would of probably walked out or slapped the idiot.

What are you thinking of doing?

Gem x
 
sorry didnt realise that mrboyle and mrsboyle are now on here lol i didnt look propley, I should read propley really lol sorry.
 
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