High HBA1c

[sadiemills]

Hi all

My son who is just sixteen, was diagnosed with type one diabetes eighteen months ago. His hb1ac levels were fine the first couple of times, ie 7, 7.5 etc. But the latest thing we have got is a letter saying that it has now gone up to 10.4, meaning that his diabetes is poorly controlled.

This is a real shock as I thought he was doing ok, and he seems to have his treatment under control. He was told by the diabetic nurse when he was diagnosed, 'eat what you like, when you like, and take insulin for the food you have eaten.' ie a dafne type approach..........but without the dafne training!

Being novices we just accepted what he said, but unless my sons ,metabolism has changed or whatever, then this method is definitely not working for him! Trouble is, that is the same nurse who we would have to go back and talk to for further advice, and in general he is pretty useless.

Just to say also that my son had been to a local pop festival for the weekend, the weekend before his test, but I didn't think this would make any difference as the hba1c is a long term, average measure isn't it?

I just don't know what to do. How bad is 10.4? How long will it take to get it back again ?

Any help greatly appreciated.

 

[Jen&Khaleb]

Hi there,

My son is much younger than yours and I'm sure some of the mum's and dad's with teenagers will be along at some stage.

The hormones travelling in your son's blood can make for some high blood sugar levels. Also, trying to fit in with what his mates are doing may have something to do with his higher a1c. The 10.4 isn't a horrid figure and your son would be able to get that lower very quickly. The hba1c gives you an average picture of control over the last 2-3 months. The blood cells they use for this test only last 2-3 months in the body so that is why it isn't done more frequently. There is heaps of info about hba1c's on this site.

Has your son been through a honeymoon period that is now coming to an end? He may have been producing some of his own insulin over the last year or so and now it is time to readjust his insulin/carb ratios or he may have just grown and put on weight and in need of more insulin. He may have been ill in the last few months and had higher levels that would also raise the a1c.

Have you had a look through the memory of the glucose meter to see what times of the day he has higher levels? Kids have been known to lie about their levels to avoid disappointing their parents or getting a lecture.

Your son might just be a bit sick and tired of having diabetes and he may allow you to take over for a bit if he needs a break. Diabetes is so relentless and frustrating and being a teenager at the same time must be very difficult.

I wish you and your son all the best. JDRF might also be able to put him on contact with other kids. Support from peers is a lot easier to swallow than parental advice.

 

[sadiemills]

Hi Jenandkhaleb and thank you so much for your detailed and caring reply. For some reason when we got the letter it was missed so I only opened it late last night and I thought 10.4 was a really bad level. I still need to tell my son but of course he is still in bed being a teenager!

Yes he may have had a longish honeymoon period I suppose, and also what you say about fitting in with his mates rings true. Grabbing a sandwich while out in town and guessing what's in it is not ideal. Also I think he is maybe less careful with snacks than he used to be when he was first diagnosed, and just doesn't bother injecting for them.

As for what's been happening, he hasn't been ill but he has taken his GCSEs which wile not an illness can be fairly devastating! All in all, thinking about it, it has been a stressful three months.

This morning I need to tell him what's in the letter and hope that we can work out a way of getting through the rest of the summer holidays with an improvement rather than a continuing slide. If he would let me help that would be wonderful, let's hope he wants a break from all the counting and measuring.

Thanks again

 

[dragongirl]

I may have mentioned this before but Diabetes Through the Looking Glass by Rachel Besser is truly excellent for parents wanting to understand diabetes type 1 from their children's/young people's perspective. The author is a Specialist Paediatric Registrar working with such young people, and also on diabetes holiday camps in the UK - and Type 1 herself and not particularly old!! Lots of quotes and case studies from young people too. I have no connection with her except having read her book and interviewed her for my counselling journal. Class Publishing 2009, and endorsed by the Juvenile Diabetes research Foundation. Thought I'd mention it in case it helps anyone.
DG

 

[sadiemills]

Thanks dragon girl, will look into that.

 

[simonoconnor]

Hi, As you first mentioned "without the DAFNE training" the eat what you like and have insulin for what you eat is ok if you know that you are giving the right dose. If you can get your son onto the DAFNE course local to you it would be well worth it. I did the course last month and found it extremely useful and it changed my control regime instantly and I have been T1 for 30 years but I was that Teenager once :lol: . The eat what you like is fine but he has to give the correct dose against his ratio. A really helpful course for him to attend I would say. Hope he has a great summer!

Si

http://www.dafne.uk.com

 

[sadiemills]

Thank you so much Si, his diabetes specialist has now agreed that he could go on a DAFNE course as it would be very much to his benefit to do so. All we need now is dates, and hopefully this will help him focus. Lol at 'i was that teenager once '!

Sadie x

 

[noblehead]

Thank you so much Si, his diabetes specialist has now agreed that he could go on a DAFNE course as it would be very much to his benefit to do so. All we need now is dates, and hopefully this will help him focus. Lol at 'i was that teenager once '!

Sadie x

Sadie,

Your lad will benefit enormously from the DAFNE course, it is extremely rare to here of anyone that has not gained new skills and understanding of their diabetes after attending a course. It was mentioned on my course that overall patients see a reduction in their hba1c by around 1.5, and have fewer episodes of hypo/hyperglycemia, so in effect this must be not only beneficial to the patient but to the NHS budget as well.

Just remember that the course will only provide the knowledge and understanding of insulin/carb ratio etc, after which it will be up to your son to implement this thereafter, but in time I would hope to see a big reduction in his a1c from 10.4 to a more sensible level set out by his diabetes care team. Good luck!

Nigel