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hba1c 10.5

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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.
 
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.
Click to expand...

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.
 
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.
 
If he is having hypos between breakfast and dinner then the morning dose shouldnt go up, would you agree........??
 
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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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 :-(
 
novorapidboi26 said:
If he is having hypos between breakfast and dinner then the morning dose shouldnt go up, would you agree........??
Click to expand...

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.
 
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!
 
Hi MrsBoyle,
Did you find out whether your GP has done the referral.🙂Bev
 
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.
 
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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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. 🙂
 
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
 
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
 
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 🙂
 
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
 
Hiya
He is having 15-20g for morning snack and afternoon snack is 10g
 
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