Hba1c

[lcsj]

Hi my 12 y/o daughter got diagnosed with type 1 yesterday. Her Hba1c came back as 136. Can anyone tell me what this means please as the diabetic nurse isn't in untill Monday and the dr couldn't tell me. Thankyou

Hi.
So sorry to hear about your daughter's diagnosis. It must have been an awful shock for you all. Hope she is starting to feel a bit better now.

The learning curve is very steep at the start but you get to grips with it, and eventually becomes a way of life.

HBA1C is a measure of average blood sugar over the last 3 months. As she's only just been diagnosed it will be very high, but should reduce quite sharply now she's on insulin. Just think of this measure as a baseline or starting point.

The hospital will give you direction on target blood sugar (ours is 4 - 8 mmol / l) and if she's is mostly in this range HBA1C will come down.

My son is 12, diagnosed 2 years ago this week and we find blood sugar very high at night when he's growing.

The nurses will be working with you on getting the right insulin doses for your child over the next few weeks. It can take a while.

One day at a time....

Good luck.

@lcsj - I"m sorry to hear of your DD's diagnosis. Can I just check, you should have been referred to hospital for emergency access and if she was diagnosed yesterday, I would expect her to still be there as an inpatient. Is it your GP who made the diagnosis? Has she been started on insulin? Please respond and let us know as a number of people have bad experiences with GPs not following protocol and I want to make sure your DD is safe and you are getting the correct support.

An HBA1C of 136 equates to an average blood glucose of 20 mmol approximately over around 3 months. Normal is 4-7 mmol. If she is receiving appropriate treatment now, then please don't worry about the pre diagnosis number. It will be much lower next time as you work with the specialist team to adjust doses and bring it down appropriately. Your DD will have this checked every three months to see how she is doing when she has her quarterly appointment with her consultant.

If your DD is not for some reason in hospital receiving treatment now, please go immediately to A&E.

@worriedaboutmygirl hi I took her to the gp Friday who done her blood sugar levels and ketones they were high so sent us straight to the hospital. She started on insulin that day they said they are expecting her to stay in untill about Tuesday so they know that we know everything. I've found them really helpful but as the diabetic team doesn't work over the weekend we haven't seen them since Friday we will be seeing them tomorrow now :)

@Focalpoint hi Thankyou you replying :) it is a massive shock she keeps breaking down to me I come home and haves a cry. Her dad stays in with her through the night as I have a 14 week old baby who is breastfed so needs me through the night.
It seems soo much I'm not really understanding anything atm I hope when I see the diabetic nurse tomorrow I will start understanding a bit more. How did you cope at first because atm I'm really not. How long untill you get good results hers went down to 12.2 today now have gone up to 16.7 I just assumed they would keep going down but like I said atm I don't understand anything about it just yet

@worriedaboutmygirl Thankyou for that. When they tested as soon as she got to the hospital it was 20 she got tested an hour ago and they are 16.7 they were 12. Something at 5 o'clock Isit normal for them to go back up? and her ketones were 5.6 when she went in but they have now come down to 0.2.

@lcsj Thank goodness! Ok, this is a really big diagnosis, but you will learn all about it. Unfortunately, you and your DD are in it for the long haul so you will take your time and gain experience. It might help to write a list of questions for the diabetes nurse tomorrow.

They may have explained to you that your DD is not producing sufficient levels of insulin now, so she will have to inject insulin instead. Things like food (mainly carbohydrates - starches and sugars), stress and growth raise blood glucose levels, so they need insulin to bring them down. You should be taught how to help her manage mealtimes, exercise and sickness which are some big things which affect her levels. The DSN should be talking to you regularly as her doses will need a lot of adjusting in the beginning. She will also need a plan for going back to school. You and your DD should be offered psychological support, but sadly not all hospitals offer this.

There are a few facebook groups that you might find it useful to join as you will get a lot of support - Parents of Children with Type One Diabetes is one, UK CWD is another. You might want to ask your nurse about any support groups in your area, but again, this can be patchy.

It's going to be OK, but it is a period of adjustment and you should allow yourself to grieve when you are not with your DD.

That's great news about her ketones. Ketones above 1.6 or so can be quite dangerous as they may have told you, so it is excellent that they have come down to a safe level. When she leaves hospital you should be given a blood ketone testing kit so that she/you can keep an eye on them if her BG goes above about 14 mmol or she is unwell in the future.

@worriedaboutmygirl Thankyou so much for taking time to reply to me. They went over a few things on Friday and she said we will do a lot more on Monday so hopefully I start understanding a bit then. I will join them groups thanks :) we have been told we will have support so I'm glad my hospital offers that. They have said she doesn't have to change her diet which has really confused me so I will ask more about that tomorrow, I think she said I will be seeing a dietician tomorrow aswell. Will she be able to go home when we are more educated about it do you think or will they want her levels to come down first?

@lcsj I know it's hard but try not to worry.

Getting rid of keytones is the first step and blood sugar is the next. The doctors and nurses will look after the insulin doses and find a regime that works for her for the initial phase. It takes a while and everyone is different.

For my son it took a week or so of increasing insulin to get his blood sugar down, then the honey moon period kicked in and his insulin reduced again. It is up and down a lot in the first few weeks.

The emotional side is very hard for everyone. It is a major shock - it is a slow process but you will get there and so will she but it takes time.

There is a lot of technology out there that will make it easier as time goes on.

Seriously at this stage - just take it step by step and day by day.

Check Facebook to see if there are any parent support groups. I'm in Ireland so the one I'm on is probably not relevant but there will be some in the UK.

It must be so hard with a newborn as well. I really feel for you.

@Focalpoint I agree the emotional side is horrible, I'm going to try and not worry so much as I don't want her to see I'm worried. I've heard about the honeymoon stage and I'm really looking forward to that. How long did your sons last for? The nurse told me it's between 6-12 months. I'm hoping we can do the 12 months Thankyou for replying it's nice to get some advice from people who are in the same situation. I hope your son is doing okay.

@lcsj my son is doing great. Still doing all the sports he was before - made the athletics relay team which is a big deal for him. He's on a pump now which is great.

But it really is baby steps at the beginning. I remember thinking it was like bringing home a new born when we left hospital as you are totally clueless and have to learn how to look after them.

Honeymoon period is a weird one. They never actually told us when it was over! It just means lower and less predictable insulin requirements. But once the teenage hormones hit him I think it's not too predictable anyway!

It is really tough on the kids and so hard when they are breaking their hearts crying and there is nothing you can do to make it go away. All you can do is be there, listen and reassure. It's such a hard age too when all they want it to be exactly like their friends.

Does she know any other kids with T1 who she could talk to?

@lcsj my son is doing great. Still doing all the sports he was before - made the athletics relay team which is a big deal for him. He's on a pump now which is great.

But it really is baby steps at the beginning. I remember thinking it was like bringing home a new born when we left hospital as you are totally clueless and have to learn how to look after them.

Honeymoon period is a weird one. They never actually told us when it was over! It just means lower and less predictable insulin requirements. But once the teenage hormones hit him I think it's not too predictable anyway!

It is really tough on the kids and so hard when they are breaking their hearts crying and there is nothing you can do to make it go away. All you can do is be there, listen and reassure. It's such a hard age too when all they want it to be exactly like their friends.

Does she know any other kids with T1 who she could talk to?

@Focalpoint sorry for the late reply, ah that's amazing him being on the athletics team. I will tell my daughter it just shows that she doesn't have to let it hold her back. Sorry to sound stupid but what's a pump?
She came home from hospital yesterday and she's doing really well so that's good.
It really is like having a newborn but already we know so much more and I suppose we will just keep learning everyday.

Hi. An insulin pump. It's a device that pumps insulin through a tube into his body as an alternative to injections. I'm not sure of the situation in the UK but in Ireland they offer to some kids when they've been diagnosed a year or two. It means he doesn't have to be a restricted on the timing of when he eats as he was when on injections.

My daughter had just turned 3 when she was diagnosed
There is a great fb group I’ll double check the name for you x

@lcsj great that she's home from hospital and doing well. Summer holidays is good timing as it means she'll be well used to everything by the time school starts. My lad was the same - diagnosed early August.

UK CWD AG (UK children with diabetes advocacy group)

Lots of lovely people on there and support 24/7

@PinaC hi I joined that group the other day. Thankyou though hope you're daughter is doing ok

@Focalpoint that sounds really good!
I know definitely she's got a few more weeks to get to understand it better before school. From next week we will be carb counting I think that is going to take me a while to get use to

Yes she’s 9 now doing well. It’s hard at first and you think things will never be the same, which they won’t but suddenly it all clicks and diabetes just becomes part of day to day life x

I was diagnosed type 1 while pregnant at 41. As an adult I was able to accept it and as I was also preoccupied with being pregnant it wasn’t as impactful psychologically as developing it as a child. Be reassured that there are Olympic athletes with Type 1 (swimmer, gold medal cyclist, runner etc) and many professional athletes and of course Teresa May. So it isn’t a barrier to a complete and fulfilling life.
I believe there will be a cure in my lifetime, it probably won’t benefit me but it will your child. As it is, there have been huge strides in monitoring and insulin delivery. Keep positive after the period of adjustment it will become easier, though it is something that must always be taken care of.
I’d recommend a insulin dependant medical ID bracelet.

There’s a lot of accomplished people with T1 (and a lot of normal people too).

If she’s into the Jonas brothers then she might be interested to know that Nick is T1. He’s involved with a great website called beyond type one.

I was diagnosed at 37 three years ago. It’s a huge adjustment, but hasn’t stopped me.