# hba1c 10.5



## MrsBoyle

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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## novorapidboi26

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.....


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## MrBoyle

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?


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## sofaraway

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.


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## bev

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.





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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## MrBoyle

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.



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.


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## bev

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.



I dont think mixed insulins are working for Dylan. Have your team offered you MDI and carb counting yet.Bev


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## Northerner

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.



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.


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## MrBoyle

bev said:


> I dont think mixed insulins are working for Dylan. Have your team offered you MDI and carb counting yet.Bev



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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## rachelha

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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## bev

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.



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


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## MrBoyle

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.



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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## Misst104

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


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## MrsBoyle

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

We have got a appointment for tuesday afternoon to see his GP.


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## Ruth Goode

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


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## MrBoyle

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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## Ruth Goode

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.



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


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## bigpurpleduck

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.


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## Gemma444

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


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## Gemma444

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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## MrsBoyle

We have made an appoinment for Tuesday to see the GP.
We are looking for a diabetic consulant. Either in alder hay or the hospiatl in manchester.
not to sure of were any more are. we will be using Daniels mum and my gran to be driving us to the hospital. until Daniel Can pass his driving test.


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## Gemma444

MrsBoyle said:


> We have made an appoinment for Tuesday to see the GP.
> We are looking for a diabetic consulant. Either in alder hay or the hospiatl in manchester.
> not to sure of were any more are. we will be using Daniels mum and my gran to be driving us to the hospital. until Daniel Can pass his driving test.



Hya

Im sure some of the mums on the email list can help with a hospital closer to you thats much better than the one your at. Hopefully your GP can help but some GPs can be difficult. Get all info ready for your appt, have an answer to any questions your GP may ask and under the patient choice you can request a referall to a hospital of your choice. This is a legal right now so you have every right to ask for that referall from your GP. 

Good luck and keep us informed. I will be thinking about you.


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## MrBoyle

Sorry for the delay in getting back to you. 

I was meant to do it the other day but forgot. I spoke with a GP but she was not a partner at the practice so she was going to have to speak with one and take it from there. 

As she does not know what other hospital there are and if they are accepting referrals at this time. Told me to ring back today between half one and 2 so I can see if a referral been sent and if not, speak with her to why not etc. 

Other than that she said the consultant Dylan under is a doctor that specializes in diabetes for children, she?s even worked with him. I ask her why he would not change the insulin regimen etc and she said it?s either because:

His experiences tell him this is best for Dylan or he thinks this is the best for Dylan. 
But she did say he can be wrong at times and we are entitled to a second opinion.

But I could tell she was not impressed with the fact his hba1c reading is so high after a year and especially after I told her that he ups the units, the nurse down the units. 

Currently, Dylan readings are:

Friday he was fine,
Saturday he had hypo at 11ish and was on 3.4 and then 12.5 for tea,
Subway he was 14.7 for breakfast and then he was 25.3 for tea, 
Monday he was 7.2 for breakfast, had a hypo at school and was 4.2 for tea,
Tuesday he was 14.3 for breakfast, had a hypo at school and was on 10.1 for tea,
Wednesday he was 13.4 for breakfast and 15.4 for tea,
And today he woke up on 14.7.

We do the same each day, we follow what they told us which is not much to be honest.
So going by that and what we?ve been told, we should up his morning insulin and tea insulin.


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## novorapidboi26

If he is having hypos between breakfast and dinner then the morning dose shouldnt go up, would you agree........??


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## shiv

Hi MrBoyle

If possible, find out the name of the consultant you want to be referred to. This makes it much easier for the GP to write to them and get you referred - I have no idea if they can legally refuse a referral, but personally I wouldn't stand for that and would insist they refer me anyway.

I was very lucky having being diagnosed at the age of 2 - mixed insulins worked fine for me for many years and I didn't switch to MDI until I was 18. This was my choice - it was offered to me at a much younger age - but I was too scared to try new things.

However it does look as if mixed insulins are not working for Dylan. With such varying results and the same input, it looks like a total nightmare! To bring his morning levels down, you would need to adjust the tea time injection. It looks as if some well placed snacks may be needed to prevent the hypos? When I was on mixed insulins I had a very strict routine of eating the same amount of carbs at the same day, every day!

I would definitely get out of your clinic ASAP. Have you joined the Children With Diabetes UK emailing list? They are a fab group of parents who email each other daily to offer advice, answer and ask questions, etc. They would definitely be able to recommend a consultant to you.

If you are able to travel to Leeds for his appointments, Dr Fiona Campbell is considered one of the best paediatric consultants in the country. I saw her speak at Friends for Life and she really knows her stuff.

You are doing such a fantastic job and it's obvious how much you care about Dylan. Being proactive in his care is essential - keep doing what you are doing!


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## Ruth Goode

Carly had much the same when she was on 2 a day, now since she is on 4 a day her level is much better - wish you could try it too :-(


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## MrBoyle

novorapidboi26 said:


> If he is having hypos between breakfast and dinner then the morning dose shouldnt go up, would you agree........??



Following the advice from the care team, it would be to up his insulin and if he has lows, to quote the consultant, "Tuff, they have to deal with it!"

We can only do what i've been told.


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## bigpurpleduck

Based on Dylan's BG readings, I suspect he may be having undetected night-time hypos - so his liver is kicking in and causing the highs in the mornings. After suffering a hypo a diabetic is at increased risk of another one for quite some time, so this theory would also explain the hypos at school.

Have you tested him at night at all? If you can test every couple of hours over a couple of nights, this will let you know whether it's a night hypo or a night high causing the morning highs, so you can then adjust his dose accordingly.

My only advice on making changes is to do it slowly and only do one thing at a time. It's tempting to try to get everything right at once, but if you change too much it's almost impossible to see the effect of the changes and it becomes a mess - I have done this often myself!


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## bev

Hi MrsBoyle,
Did you find out whether your GP has done the referral.Bev


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## MrsBoyle

We do his bloods when he gets up in the night and there 17+

We are seeing the nurses on monday to talk about it all with them, as they rang us this afternoon about it.


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## MrBoyle

Spoke with the nurse and she told me that one hypo per day is one to many for her. 

She said Dr X was wrong to treat us how he did, and said it must have been a busy day but he should give us his full attention. 

We talked about everything and we are now crab counting, aiming for a set amount of crabs per meals and sacks. She said that Dylan's day to day readings are not too bad to get his HBA1C so high, so we have to look in-between pre breakfast and pre tea readings. 

She wants us to try this and asked us to test his bloods morning sack and before lunch to see if he is high. If he is, we will change his type of insulin to another one and give that a try. 

We spoke about the MID and she said, is better control but the school have to do his insulin, no issues there but she said it may be if someone has to hold Dylan down as they have rules to follow. 

But she also said that we should be able to work around that but if i'm happy, try the above and then if that does not work, try MDI or get a referral to another hospital. We don’t have transport so not in our best interest to go another hospital. 

She also said Alder Hey will see us on a one off but as we live out of the area, they won’t see us for clinic.


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## Northerner

Glad to hear that you have made some positive progress  I hope that the changes suggested help Dylan to more stable levels. If not, then MDI is definitely the way to go (or possibly even a pump, as there would be no issue at school of people holding him down). Wishing you all the best of luck and hope that you are able to enjoy Christmas.


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## bev

Hi MrsBoyle,

It sounds like you have had much better advice than you did previously - so hopefully things will start to look up. I am not sure what was meant by 'holding Dylan down' - but hopefully school will take it all on board if MDI is introduced in future.Bev


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## Ruth Goode

Im so pleased to know you got a better advice :-D you're doing so well to know it was not right and seek a better advice, etc so well done and Merry Christmas to you all


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## bigpurpleduck

This sounds like *much* better advice. I'm so pleased you've found someone happy to help. Carb counting will definitely help. Hopefully with the assistance of this DSN Dylan's control & quality of life will improve.

Keep us posted, & feel free to pick our brains anytime


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## Gemma444

Hya becca

Glad you have had some positive advice. What do you give Dylan for his snacks at the moment? We were told to not give a snack over 20 cho (carbs) we stuck to around 15 cho when jack was on mixes. Good luck and have a good christmas. At least your nurse is willing to try other options if things don't improve. Xx


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## MrsBoyle

Hiya 
He is having 15-20g for morning snack and afternoon snack is 10g


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