• Please Remember: Members are only permitted to share their own experiences. Members are not qualified to give medical advice. Additionally, everyone manages their health differently. Please be respectful of other people's opinions about their own diabetes management.
  • We seem to be having technical difficulties with new user accounts. If you are trying to register please check your Spam or Junk folder for your confirmation email. If you still haven't received a confirmation email, please reach out to our support inbox: support.forum@diabetes.org.uk

Going to be interesting.....

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

Tina63

Well-Known Member
Relationship to Diabetes
Parent of person with diabetes
I feel a rant coming on - sorry!

Tonight my son has an appointment with our GP as his prescriptions need renewing. He had blood taken a couple of weeks ago, so his HbA1c will be there in black and white tonight - expecting something spectacularly high - will be very interested to see just how high. Given that our GP was not at all happy with a 7.8 only weeks after diagnosis, I can see him blowing a gasket tonight, as I am 100% sure it will be well into double figures, possibly 12+.

Whether or not my son permits me to go in on the consultation is another matter. Our GP is very good, speaks only to the patient, so unless my son draws me in on a conversation (very unlikely - he just sits and nods in all the right places, saying what he thinks they want to hear) I would be there simply to observe, but I would like to hear what is said. It is very difficult at his age (16, almost 17) as I appreciate it's all about him and he has every right to confidentiality, but I'm his mum and care deeply about him and what happens to him and I also feel we all still have so much stuff to learn and of course I am 100% concerned that he isn't conforming at the moment. We were shut out at his last hospital appointment so only have the information sent in a letter the following week.

It really is such a difficult position to be in as a parent. Had he been diagnosed much younger and I had been fully involved, maybe things would have been easier now. As it is, he took 100% control from day one, testing and injecting, and though we have been shown how to do it all, he has never allowed us to. There have been many times in this past 3 months when I feel he should test for ketones, but he has refused to even check his BG levels (last tested on 17th Nov I believe).

He then has his annual review at the hospital next week (first one) and they automatically do an HbA1c every time, so it will be interesting to see if in the space of a week he can start to turn things round, that is if our GP gets through to him today. I guess I should just be grateful he hasn't ended up with DKA. I am worrying with Christmas coming though. He was diagnosed on 29th Dec last year (and would have been earlier had I been able to get him to see a doctor) and he is an out and out glutton, so all the extra food over the holiday period will be a big problem, especially if he doesn't bother injecting half the time (which is what he does at the moment 'Oh I forgot' is his bog standard reply). We are out and about visiting various people over the whole holiday period, so I know temptation will be there all the time, and I will be less able to steer food to healthier options. One side of our family are BIG on the chocolate front, and I can guarantee tins of chocolates will be passed around all day and left for people to help themselves to etc etc. He will be unable to stop himself. Maybe I should have a friendly word in advance?

Oh I don't know, I just want someone to wave a magic wand. I appreciate the big D can't go away, but I just wish he would start taking it all a bit more seriously. I am pleased as punch he seems to be getting on with life, school, weekend job, out with mates etc, but if only he would take proper care of himself.

Thanks for listening - I will report back later!
 
This must be so difficult for you. Could the hospital / gp get someone to talk to him who now has serious complications due to not looking after themselves properly and give him an insight into what could happen - bit harsh, I know, but might make him more aware. Bless him at 16 he probably feels he is adult enough to take control etc. Maybe a word in family ears to explain seriousness of situation might work with regards to leaving chocolate and sweets out.

Also is there any young adult forums, support groups he could join ?

Hope you figure things out, I'm sure everything will work out for him x
 
Hi Tina - sorry that you are having such a rough time. Can you make an appointment with your GP to talk about how you are feeling. He or she may be able to point you in the direction of something that can help. You could talk about how difficult your days are and how worried you are particularly your concerns over Christmas. Even if your Dr cannot provide any concrete help it will give them a better understanding of your son and that may enable them to ask your son questions that uncover where the issues are.

Good Luck {{{Tina}}}
 
Hope it works out, Tina.

I'm pretty sure the GP will realise what's going on, and may consdier that in the long term, the only way for your son's situation to improve is to speak with him alone, and explain that it's his responsibility. GPs and clinic staff have good ways (which I won't list in public, for obvious reasons!) of identifying any "made up" blood glucose readings in record sheet, for example.

Many hospitals have a handover scheme from children / paediatric to adult diabetes clinics. That information should be available to parents by phone.
 
I used to make up results and say i'd lost my book, etc and I'm sure they knew exactly what was going on. We didn't have HbA1c's then to catch us out, so they couldn't really do much.

Now they have, the GP can tell him in no uncertain terms what his future will be if he doesn't look after himself. I'm sure his sense of self-preservation will kick in once he hears it from the horse's mouth. He's clearly working for his future, so he must feel it's worth doing what's needed and perhaps he just needed to get his head round things a bit more before he takes the bull by the horns.

I'm sure, also that he takes in what you tell him. But if he feels he's doing it all just to keep you happy, he'll resent it as a controlling influence. If he can decide for himself that he needs to do it, it'll be a part of him.

Not sure what I'm saying but maybe if you could try calling his bluff and tell him he's a man now and can make his own decisions, with love and support, but on his own terms, maybe he'll be able to find a compromise?

He'll come round when he needs to.🙂

Rob
 
He has probably been told about complications (but it all seems a bit 'never never' 'at some point in the future').

Not sure if it was just the age at which I was Dx (21) but one of the icicle-down-the-back better-take-this-seriously realisations for me was not the loss of eyesight, feet or kidneys, it was more to do with the dangly collection of objects in my trousers. Knowing that they were high up on the Diabetes Complications Hitlist was a significant motivator for good control!
 
everydayupsanddowns said:
He has probably been told about complications (but it all seems a bit 'never never' 'at some point in the future').

Not sure if it was just the age at which I was Dx (21) but one of the icicle-down-the-back better-take-this-seriously realisations for me was not the loss of eyesight, feet or kidneys, it was more to do with the dangly collection of objects in my trousers. Knowing that they were high up on the Diabetes Complications Hitlist was a significant motivator for good control!
Click to expand...

.....your car keys Mike, and that you might lose your license if poorly controlled? 😉:D
 
Hopefully the result itself along with a chat from the Dr might help your son get back on track. Keeping my fingers crossed for you Tina 🙂
 
Mike actually got the right idea with the wedding tackle notion..
It?s no good trying to scare them with tales of doom and gloom, teenagers see themselves as invincible and immortal..

Telling them that they won?t get a driving licence is also a pointless task, as how many teenagers can realistically find a job to afford a car! They know this so having a driving licence isn?t something they tend to hanker after like they used to?.

So pointing out how lack of diabetic control can affect ?sex? and how much it is here and now rather than like kidneys and feet falling off sometime in the future has a better chance of getting the message through.

As to his GP and diabetic team, no they won?t be hoodwinked into believing him, they know when they are being sold a story line but there problem will be how to tackle it without alienating him from clinic? Which if they start tearing into him it likely to do, a lot of times for the team it?s a case of treading very carefully to keep him coming back to clinic, as they will only have a chance of helping him and turning him around if he?s in clinic

As a mum what can you do apart from worry which is a normal duties bestowed on mum's when it comes to their brood

Well you can discuss his control directly with his team due to confidentiality reasons, but this doesn?t stop you from dropping in it with his team and priming them with information or concerns about him..

But when you phone do ensure that you say that you aren?t phoning to discuss his diabetes as you do understanding that they can?t due to confidentiality reasons, but you would like them to have some information which you feel would be helpful for them to know?
 
Ellie Jones said:
Mike actually got the right idea with the wedding tackle notion..
It?s no good trying to scare them with tales of doom and gloom, teenagers see themselves as invincible and immortal..

Telling them that they won?t get a driving licence is also a pointless task, as how many teenagers can realistically find a job to afford a car! They know this so having a driving licence isn?t something they tend to hanker after like they used to?.

So pointing out how lack of diabetic control can affect ?sex? and how much it is here and now rather than like kidneys and feet falling off sometime in the future has a better chance of getting the message through.

As to his GP and diabetic team, no they won?t be hoodwinked into believing him, they know when they are being sold a story line but there problem will be how to tackle it without alienating him from clinic? Which if they start tearing into him it likely to do, a lot of times for the team it?s a case of treading very carefully to keep him coming back to clinic, as they will only have a chance of helping him and turning him around if he?s in clinic

As a mum what can you do apart from worry which is a normal duties bestowed on mum's when it comes to their brood

Well you can discuss his control directly with his team due to confidentiality reasons, but this doesn?t stop you from dropping in it with his team and priming them with information or concerns about him..

But when you phone do ensure that you say that you aren?t phoning to discuss his diabetes as you do understanding that they can?t due to confidentiality reasons, but you would like them to have some information which you feel would be helpful for them to know?
Click to expand...


.....Ellie, I was having a joke with Mike
 
Eh?

I was actually talking about car keys... You lot are SO rude! 😉:D
 
Take a step back!

Hi Tina

I don't mean to be harch but take a step back if not it will be worse for both of you two. Me and my mum had a similar problem when I was a teen so I left home at 15 and still haven't come back and its over 12 years now!

My best advise to u is to take a step back treat him as an adult ask questions like Hi, how are you today? How was school? Is there anything you need let me know. Give him tasks like one day a week its his time to cook dinner. Simply let him come to you and show him you are there ready to help him when he wants. Take a step back from his diabetes I remember from my own time I felt it like that was all my mum spoke about everytime I saw her and I hated it. Ask him but not too often. I am glad to hear that he has taken on his own diabetes from start thats a good sign! Be proved!

All the best Tina!
 
Wise advice from Miss Molly - it's tough, but necessary for parents of teenagers with diabetes to bear in mind that the aim is the end result of a healthy responsible adult with diabetes.
 
Thank you everyone for your kind words and messages of support. Well I've learnt a thing today - I didn't know it can affect your wedding tackle! Well there you go, I've been educated anew!!! Mind you, he has no interest in girls whatsoever at the moment (or boys come to that :D) so that may well not carry any weight telling him that!

My son is still under the paediatric team at the moment, maybe because he was 15 at diagnosis (3 days short of turning 16), and they gave us a whole years appointments in one go. I don't know when they will move him over to the adult services, but that will be in a completely different part of the hospital. Next week's appointment is the last one we had booked in advance, so I guess we'll find out what will happen then,whether he stays with the childrens service or moves to adults.

I am never sure how we stand over confidentiality issues with him being 16 now. Every time he has a hospital appointment, a letter (copy for the GP) comes addressed to 'The parents/guardians of.....' so of course we open that. We do share the contents with him, then file it all in our folder we set up to keep everything together. We have always been welcomed into appointments with him too, but last time he was expecting a rocket up his backside so as he was called through, he said 'I'm going on my own.' He did come out and offer his HbA1c, it was 9.1, up from 6.1 3 months earlier, and he had apparently promised faithfully to start testing and injecting properly again, but he literally did for only 2 or 3 days. Ever since (mid Sept) he has just gone back to ignoring it all again. His last hypo was in July - that in itself speaks volumes I think.

He hasn't bothered writing BG levels down for months, but as I said, he hasn't tested for ages anyway. The hospital seemed very laid back about that. Said there was no point looking in his diary if he wasn't going to write it down, rather than telling him to use it properly, so he just hasn't bothered. I suppose its difficult for them too. They can only make suggestions, not bully him into things, but I had expected them to be much 'heavier' with him, instead they are just so nicey-nicey. Maybe adult clinics would suit him better? He only tests in bursts, once a day for 5 days, then nothing for a month again. I guess he has been damn lucky to avoid DKA, and the only positive I can come up with at the moment is that he does always faithfully take his Lantus. He won't inject at school anymore, and not sure that he always does at breakfast, mainly only with his dinner. He grazes all day too, and certainly never bothers to inject with that. When he did go through a burst of morning testing early October, he was having waking levels of 14+, so I know it's going to be dire.

I really have backed off considering how full on I was for the first few months. I was I admit constantly talking about it, scared and fearing big problems, wanting him to test all the time, but I realised I was stifling him, so backed off big time, and sometimes now I feel that is what has caused this backwards step. It has now developed into full-blown rebellion/denial. It is so hard, because on the whole he seems so well and is obviously getting away with it at the moment, so I don't suppose he can see any great need to bother testing and injecting if he doesn't feel like it. He did see a psychologist in the early days as he had massive anxiety problems over leaving the home to go to school each day, but since then he has refused when offered a session with her. She has since left and a new psychologist has taken over, but I don't suppose that will make him any more inclined to take up an appointment. They will give him the opportunity again next week, but I can guarantee he will say no thank you!

I will wait and see how we get on tonight, then maybe email his DSN ahead of next week, so at least she knows what it going on. I have done in the past though, and not heard back from her. I have left phone messages too and end up having to chase several times to get to speak to her. It's not always easy getting hold of her. She seems to just nod and agree with what I say but has nothing particularly constructive to offer me, but I'm not having a dig, teenagers are a right handful at the best of times without things like this to contend with. I don't suppose there are any magic answers. As several of you have said, it has to come from him when he is ready to deal with it properly. It just worries me what damage he could be doing in the meantime.

Do GPs send HbA1cs back up the line to your consultant? I know it comes from Consultant to GP, but not sure if it goes the other way too.

We do on the whole have a good, close relationship. He can be a typical 'Kevin' sometimes but on the whole is a really pleasant lad, but of course if I ever mention anything diabetes related he just sees red (well very occasionally he is open to talk about it - but only once in a blue moon). I just tell him how many units his dinner will be if it's something he wouldn't know the value of, but even then I just say 'dinner's served and it's 8 tonight.' I don't make a big deal of it. That's another issue, he won't now inject before a meal either, waits and does it 15-20 minutes after eating - or when he 'remembers'. He says it's fine, he was told he could do that (we were told that if you were out at a restaurant for example, and didn't know at the start if you would have dessert or not it would be ok to inject straight after eating) so says that is fine That can't be helping either. Oh he drives me insane!

He would never consider going on a forum or to anything like a support group, he just isn't interested. He would go mad if he knew I write about him on here, he just wouldn't understand my need to discuss it.

Oh well, as I said earlier, this next week he is going to see both his GP and Consultant, so let's see if anyone can get through to him. Fingers crossed everyone!

Thanks
Tina
 
Oh Tina,

It must be sodifficult for you! If you don't talk to him about his diabetes he thinks you don't care and if you do you are such a nag! I can't imagine how worrying,frustrating and at times useless you feel. I would try and get your son to look at this forum and maybe join....or another forum that has other diabetic teenagers on. What is most important and critical to his health is that he doesn't keep skipping injections. Do you carb count all of his meals for him? Maybe you should encourage him to carb count his own meals? Maybe offer him a treat if he achieves an HbA1c of under 7? He definitely sounds like he is in denial of his 'D' and is rebelling......this happens very easily and before you know it you journey down a road of bad habits. He needs to motivate himself to get back on track or he is risking nasties like his eye sight etc,etc.......the very best of luck!
 
Phil65 said:
Oh Tina,

Do you carb count all of his meals for him? Maybe you should encourage him to carb count his own meals? !
Click to expand...

I only carb count main meals for him, as I don't think he really knows the values of things like potatoes, rice and pasta, and I do weight those (well rice and pasta anyway) as I feel the margin of error for those is very wide. He does all the rest himself, he has done for ages. I did used to in the early days put a note in his lunchbox - sandwiches 4u, crisps 1.5, biscuit 1.5, apple 1.5 etc, but he soon got to know what was what, so I stopped that. I do just mention if he has something different for a change (like a sausage roll for example) and say when he comes down 'your sausage roll in your lunch today is 2' but as I said, he won't inject at school anyway.

Good point over the bribe though - he wants to buy out of his phone contract and get a new iPhone. Maybe we could stretch to paying his last few months of his old contract if he did get it down to 7 - good idea. Will store that in my memory bank until after next week's hospital appointment, when maybe it's a good time to start a discussion and offer that as a bribe. Actually, maybe tonight after the GP! Good one. Thanks! Anything's worth a try.
 
Hi Tina,
sorry to hear about your continued frustration and worry.
What it boils down too though is he has no idea how you feel and as far as he is concerned you have no idea how he feels :(
Which is very hard on both parent and child (teenager)

I also wonder besides teenage hormones and denial as to whether he has been bullied or feels as if he is different at school thus wont inject.

If this is the case even though it's a bit restrictive has anyone suggested using mixatard? This is both bolus and basal in the same syringe. This way he would only have to inject twice a day and perhaps have some rapid insulin for high numbers/corrections when needed.

Best wishes
Sue
 
I would caution against bribes. Simply because it could easily be something he comes to expect or he could use to get what he wants.

Remember to try and find some time for yourself - your health is important too.
 
margie said:
I would caution against bribes. Simply because it could easily be something he comes to expect or he could use to get what he wants.

Remember to try and find some time for yourself - your health is important too.
Click to expand...

I agree Margie. 🙂

Also, Sue's suggestion is a good one. Better to look for direct solutions. And there's always the possibility that he'll see it as being worse off and realise the regime he's on isn't all that bad. Pity he can't 'accidentally' meet an older diabetic who regrets poor control from early days.

Rob
 
Robster65 said:
I agree Margie. 🙂

Also, Sue's suggestion is a good one. Better to look for direct solutions. And there's always the possibility that he'll see it as being worse off and realise the regime he's on isn't all that bad. Pity he can't 'accidentally' meet an older diabetic who regrets poor control from early days.

Rob
Click to expand...

I don't agree, a little bribe occasionaly doesn't hurt if it helps to get someone back on track and lower their HbA1c....I'm not talking stupid bribes here I'm talking a little motivator..I know what teenagers are like!
 
Status
This thread is now closed. Please contact Anna DUK, Ieva DUK or everydayupsanddowns if you would like it re-opened.
Back
Top