Going to be interesting.....

[everydayupsanddowns]

I think 'bribe' is being used in a sort of knowing parental way...

For my money, offering a reward for positive behavior, rather than sanction against negative behaviour is a completely valid approach and can certainly help make the results of improvement more immediately tangible. Nothing wrong with using something wished for as an encouragment. I read a US blog post a few months ago that eloquently described the emptiness of putting in all this work so that 'nothing' happens (ie no complications). 'Nothing', she suggests, is a rubbish reward.

Texting my Pancreas - What we aim for

Of course, the approach has to be clear and whatever the reward is needs to be judged carefully 🙂

 

[Marc]

Arrgghh

Why do I always see these when I'm at work. I will reply when I get home. I'm also going for a drink with a youthworker at Birmingham Childrens Hospital with young diabetics so may see if she can give any ideas she picking my brain.

Marc

 

[Hanmillmum]

Hi, I think a reward for achieving a good Hba1c is justified, after all it is hard work and effort, why not reward same ? IMO if there is no motivation to change then he ain't gonna. Best wishes Tina - must be hard knowing which way to go with it x 🙂

 

[koko]

Hi Tina63

I am so sorry that must be incredibly tough. I was diagnosed at 10 so had sometime before hitting my teenage years to adjust. But there were times when some of the kids at school would say thinks like "are you a druggie?" and I would run off an hide in the toilet to do my insulin when I was moved on to 4 injections as I didn't want anyone to see. Kids and teachers would also ask me if I was using my diabetes as an excuse for various reasons like if I was high sugar and couldn't go out they would say I was making it up or if I was low sugar and needed to excused from class they would say I was making that up too didn't matter what my BM was!
After returning to school after being in hospital with DKA I was asked by one of my friends why I hadn't been in and explained what had happened but one of the lads in the class had a grandfather with type 2 who never went in hospital and told that to the whole class and said verbatim "you don't go into hospital with diabetes she's lying" the whole class believed him over me. I didn't go back to school for 2 weeks after as I was so upset.
I think like Sue said maybe his being bullied or it might be peer pressure. It took me years to admit what was going on to my mum.

I really hope you get the results you need he might come around soon, will be keeping everything crossed for you.

Kay X

 

[MeanMom]

Hi Tina

Hope it goes well - FWIW I don't think a 'bribe' is going to work - either he wants to look after himself or he doesn't - you wouldn't bribe an adult to manage their diabetes properly...

Don't believe telling him 'horror' stories would help either - I would guess he has probably googled them all anyway. That may be part of the trouble - know it is with my K

Sue's idea of giving him other options/different regimes may help - it would make him feel he has more choices and that HE can be in control of the Diabetes, not the other way round.

Don't worry too much about record keeping and testing - people used to manage without finger prick testing when it wasn't available - I think it's a good sign that he injects the Levemir - he does want to look after himself - and is doing (just not enough,perhaps)

Like I said hope it goes well, he may surprise you!

Xx

 

[Tina63]

Well....... HbA1c was 11.6 - not quite as bad as I thought it might be, but bad enough. Our GP said it's the worst he has for any type 1 on his books at the moment!

It was a very good consultation I felt, I was welcomed, though I did offer to leave after a few minutes but both of them told me to stay. And we got a full 20 minutes - not he allotted 10, and our GP NEVER runs over!

He empathised with him, kept saying it's a tough diagnosis to be landed with, but that he has, so has to make the best of it. Said all the usual stuff about not letting diabetes rule your life, but find a way to let it live alongside you etc.

I am not very good at retaining and relaying information, but basically he told him it's obviously not good enough running at such a high level, he needs to find a way to get things back under control. He said it's like he has syrup running through his body, and that's not good for his eyes, heart, kidneys, feet and legs and just generally.

He then went on with the horror tale of a girl he claims in on his books who was diagnosed at a similar age, had bad control for a couple of years, and now at 26 or 27 is blind in one eye. At that, my son burst into tears. He apologised for upsetting him, but said he just wanted to get across how quickly things can go seriously wrong. He mentioned a timescale of 2 years of bad control to get this serious.

I was a little shocked (knowing what I do from on here) at his immediate solution, to up his Lantus by at least 5, maybe as much as 15 units in the short term 😱 before he sees his consultant next week with a view to lowering his levels quickly. I have to say he did admit at the outset earlier this year that he knows very little about diabetes - it shows I think! He then mentioned the alternative of twice a day injections after I commented that now he is in 6th form with a different group of friends he doesn't feel comfortable injecting at school like he did before the summer. I KNOW that would be disasterous for my son. He would never cope with the fixed regime on that, of injecting the same time twice a day (he is all over the place with his Lantus timing as it is) and he certainly COULDN'T deal with eating set amounts at set times. He never stops eating.

He was asked to be honest about what he actually does do regime-wise, not what he should do, but what he is actually doing. He did admit he is injecting very little Novorapid, but never forgets the Lantus. That's why the GP feels upping the Lantus by a load would cover not injecting Novorapid. Surely it doens't work like that? I have told him to leave it where it is, or just up it one or two units tonight, no more than that. He did also tell him to be completely frank and honest with the consultant, it's no good lying to her.

He did then go on about being his servant, saying he is employed to serve people like my son, so any time my son wanted a chat he would be there to see him. He said they would work together to get things running as smoothly as possible.

Oh and the GP talked about weight, upping insulin ups your appetite, but upping your food intake ups your weight, and so it's a vicious circle. He has told him he really does need to keep his weight under control, watching his carbs and upping his exercise. He did say genetics play a part in weight (amazed he said that, he has always been 'off' with overweight people) and my son is doomed coming from our family that way!

So, much as it sounds a bit of a muddle, I did come out of the consultation feeling pretty positive, at least pleased some hard facts were given to my son. He is shell-shocked though I think, and did say to me on the way home that he is dreading Christmas and can feel a big depression descending on him. I am confident he will be ok, he will bounce back - whether he will heed anything he has been told tonight or not I can't be sure at the moment. I am going to leave him to it for a day or two, just wait for him to come to me and talk when he wants to. As I said, I did just say to him that I think it would be dangerous to up his Lantus immediately by 5 units - would be interested to hear what any of you think about that?

 

[everydayupsanddowns]

Thanks for such a thorough update. I'm sure many are keen to know how your son gets on.

Upping Lantus like that is not something I've heard of, but I can sort of see why it is being suggested. The high levels are down to insufficient insulin and while the BG is rising in spurts around mealtime, at least with more Lantus there wood be a steady(ish) level of insulin dealing with some of the days BG. The problem, of course, would be if the dose was too high. And if levels began to fall overnight hypos would become a real risk.

It would be better to try to get novorapid to be more of a habit (which will open up much more flexibility food wise too).

 

[Tina63]

Yes that's what I thought, we proved back in the spring/early summer when we got his HbA1c down to 6.1 from a starting point of 15.8 that it can be done. I find it so frustrating knowing that he could acheive it if only he wanted to. Would you personally jump it by a whole 5 units in one go?

Oh well, I will see what tomorrow brings.

 

[margie]

Pleased that the appointment went better than you expected - I won't say well because it sounds a bit traumatic but it sounds like your son is mindful of what was said.

I did have one consultant tell me that they normally increase Lantus in 4s. Though personally I would go for the smaller increase myself.

I would not want to increase by that amount unless I had an idea of what was happening overnight as that is when his body will be relying on the Lantus alone and as Mike said if its too high there could be hypos.

 

[trophywench]

I suppose it depends on what your dose of Lantus is - mine was 18u a day so NO WAY would I ever have slapped it up by 4u ! - I used to go flipping hypo about 6.00 am as it was.

I'd buy him his own copy of Ragnar Hanas and tell him if he wants to look after his own D, then at least take advice from the book - which is good! - if he won't accept any advice from anywhere else.

It's perfectly true incidentally - I know that girl - except the one I know had to have a kidney transplant, followed by losing her sight, before she was 30, followed by another kidney transplant 2 years ago when she was 36.

I kinda think it's a bit like this - get diabetes, oh this is new! - concentrate on it for 6 months. OK that's quite enough now, everyone says I'm doing well, so I'm not spending any more time on that, want to get on with my life so I'll just ignore it now.

You see he's 16. Forever - how long's that? - I mean anyone over 25 is completely past it, so no point in worrying what happens after that .....

 

[Copepod]

I think in this case, I'd do what the GP said about increasing Lantus dose by 5 units, because (a) it sounds a realistic increase, expecially if Tina's son is missing some bolus doses, and (b) because it would be unwise to only follow some of his advice, now that you both seem to trust him.

 

[lizabetic]

You sound like you have such a thoughtful GP, he actually takes into account your sons lifestyle. I know it sounds obvious but i've never been asked about what I do or anything by my GP or Consultant.

I pressume your son got put straight into adult care rather than paediatric? That was what they done with me. We always thought there was a lack of patient care around the fact you've got a diabetes diagnosis i.e. no councelling or anyone telling us what is what!

Can't say much about the insulin upping - except when I had to come off my insulin due to hypos (complicated you might not have read my story soz!) they took me from 10 units to none because of it. They didn't lower it to see first. So not surprising I guess!

 

[Phil65]

I suppose it depends on what your dose of Lantus is - mine was 18u a day so NO WAY would I ever have slapped it up by 4u ! - I used to go flipping hypo about 6.00 am as it was.

I'd buy him his own copy of Ragnar Hanas and tell him if he wants to look after his own D, then at least take advice from the book - which is good! - if he won't accept any advice from anywhere else.

It's perfectly true incidentally - I know that girl - except the one I know had to have a kidney transplant, followed by losing her sight, before she was 30, followed by another kidney transplant 2 years ago when she was 36.

I kinda think it's a bit like this - get diabetes, oh this is new! - concentrate on it for 6 months. OK that's quite enough now, everyone says I'm doing well, so I'm not spending any more time on that, want to get on with my life so I'll just ignore it now.

You see he's 16. Forever - how long's that? - I mean anyone over 25 is completely past it, so no point in worrying what happens after that .....

Good post...particularly concur with the last two paragraphs.

 

[Phil65]

I'm pleased that you feel happier Tina with your appointment yesterday. I have to say this is one of the most interesting, fascinating and worrying threads I have read for a while. The whole story and everyone's differing advice and opinions is quite compelling. Although your GP sounds caring and understanding I also think that he sounds out of his depth when it comes to Type 1 Diabetes....as worried as he is about your son, he lacks expertise in diabetes. His recommendation of raising lantus by 5 units is not a bad suggestion at least it should help to lower your son's bs's a bit. However, he really needs to take his fast acting with meals or ketones and DKA are almost inevitable, I'm surprised that he hasn't suffered complications already. Your consultant and specialist diabetes nurse (if you have a good one?) really need to lay their cards on the table and all of you need to work together and formulate a plan to help your son.....before he should then take complete control of managing his own diabetes. Then Tina....maybe you can get off your son's case a bit? I hope you all work it out.

 

[Northerner]

Personally, I would NOT increase lantus by such a large amount unless I was already on a high dose and the 5 units represented a small proportional increase. Since I am on 4 units of lantus currently, an increase of 5 would be a 125% increase! 😱 If he's on say 40 units though it's less of an increase, but I'd still be inclined in that case to raise it by no more than 2 so I could check that it wasn't causing hypos.

Something else to bear in mind, which rarely gets mentioned because it doesn't seem logical, is that it can be a bad thing to reduce HbA1c too quickly as this can lead to problems like neuropathy. We've had a few members report that this has happened to them, sometimes when they have gone onto a pump and got good control very quickly.

I hope he does get serious about looking after himself. If he spends some time now learning about it (the Ragnar Hanas book is excellent) then it won't be a constant problem for him.

 

[Copepod]

I still reckon that Tina's son's GP knows the situation better than any of us.

In particular, Tina has said her son is missing bolus doses, so what would seem a large relative increase in someone taking both basal and bolus doses, is not such a large proportion increase in total insulin being taken in a 24 hour period.

 

[Robster65]

Pleased to hear he's had a bit of a wake up call. It'll do him no harm at all.🙂

Rob

 

[Tina63]

Thank you all for your replies. It is interesting how opinions differ. His current Lantus dose is 25, and the GP said up it to 30, even as high as 40, before he sees the consultant next week. I just feel even 5 is a massive jump - being scared of night-time hypos, so going up 15 seems suicidal. I guess though, given that his waking levels have been as high as 14 (when he last tested a month ago) that he actually will probably be fine.

I am very scared to hike it so much given that the GP admits diabetes 'isn't his thing' - he's a dermatologist by specialty - and I really do think he is out of his depth to some degree. Saying that, he is incredibly thorough and doesn't like to leave any stone unturned. I just feel happier leaving things until next week, or at least only making minor changes.

My son was very subdued this morning, but I did find more used needles than usual in his room this morning (he is an incredibly untidy so-and-so and leaves used needles on his desk - but at least I get to see how many he has used) so I hope that means he had some novorapid last night, and again this morning. I asked him if he upped his Lantus last night, I got the bog standard reply - 'I can't remember!' I left it at that. When he came in this afternoon he went to his room as usual. I told him units for dinner, but whether he has had any or not I don't know. I actually suspect he hasn't as his backpack has sat on the bottom of the stairs all evening and his kit is kept in there, and he always takes it to his room. Some time later he came down and something was said again, so I just asked casually again 'So how many units of Lantus did you really have last night'. He said 28, but he said he has been gradually been increasing it lately anyway. I don't have a clue if he has been testing though to see what effect it has had.

I can't remember who asked, but no, he is not seen in adults yet, he is seen at the children's hospital - don't have a clue when he will be moved over to adult services - it has never been mentioned. Is there a standard age they are moved? Or does it depend on things like age at diagnosis? He is almost 17 now. He is currently seen there every 3 months. Will that change under adult services? I suspect yes. I quite expect though (from a friend locally whose son is also type 1) that they may want him back within the month with levels like this. We should have had a home visit end Oct/early Nov from our DSN and dietician, but for whatever reason it never came about.

Back to the Lantus, I am just so wary that at the start the nurses were so strict about the altering of the dose of that. They said he must never go up or down my more than a maximum of 2u at a time, preferably only one at a time. I think he started initially on 30, then came down bit by bit to 25, which is where he has been since about his third week.

He is more just plain old bad tempered tonight, pretty much aimed at me, but I am big enough and old enough to handle that! His sister will be home from uni at the weekend and they do get on very well together, and she has a great desire to chat to him one to one, so maybe she can get somewhere with him.

I just want to say a massive THANK YOU to everyone on here though. I really value having people to talk to. I love my husband dearly, but he just seems disinterested and gets bored when I want to talk about things. He just doesn't seem interested. Men eh??? (Sorry boys on here, you lot are great) It's good to be able to share my worries and thoughts though.

I will keep you all posted with developments. Watch this space.....!

Oh and we do possess the Ragnar Hanas book, but again he isn't interested. He says he can't understand why I bought it as it's not my problem, and though he did a token flick through on one occaion, he hasn't touched it since. I may mention looking at it again, or pop it into his room, but I know I will get a knock back from him.

 

[Pumper_Sue]

Hi Tina this bit caught my eye

I told him units for dinner, but whether he has had any or not I don't know.

I think personally you need to tell him how many carbs in the meal not how many units.
There is no way he can know what units to have until he has tested. (correction could be needed)
Another option is that you don't put a meal in front of him until he has injected. Lunches make them as low carb as you can, then again the impact won't be so bad on his blood sugars 🙂
He also needs some help to come to terms with his diabetes. Perhaps a word with the DSN to arange this for him or have someone to talk to him at his apt.

Another option is that you have another talk with the GP and perhaps arange your son is seen every week with all blood tests written down and insulin doses as well.

 

[Tina63]

Hi Tina this bit caught my eye


I think personally you need to tell him how many carbs in the meal not how many units.
There is no way he can know what units to have until he has tested. (correction could be needed)
Another option is that you don't put a meal in front of him until he has injected. Lunches make them as low carb as you can, then again the impact won't be so bad on his blood sugars 🙂
He also needs some help to come to terms with his diabetes. Perhaps a word with the DSN to arange this for him or have someone to talk to him at his apt.

Another option is that you have another talk with the GP and perhaps arange your son is seen every week with all blood tests written down and insulin doses as well.

Sue

I really appreciate your comments BUT he WON'T test, last did on 17th November. He knows his carbs to units ratio 1:10 so if I tell him how many carbs he knows the units, really makes no difference. He calculates is own lunch and breakfast ones - well used to when he did inject. He is over 6' 2" and 15st so I am not going to be able to physically make him do anything he doesn't want to, it just won't happen. This is why I despair so much. If he were younger/smaller, I could be more firm with him, but at his age and size I am up against it.

He has his own money, he has a weekend job, so if I don't have food in he likes he just goes off any buys what he wants - I have no control over that whatsoever.

Also, another big problem is that carbs are his 'thing'. He's not a bread or potato lover, but pasta, couscous, pastry and cakes, biscuits and sweets. He thinks nothing of going and buying a family sized bar or chocolate or large bag of Skittles and eats the lot in his room, I just find the rubbish the next day. I really don't see what I can do, short of locking him in (and he is allowed into town from school at lunchtime being in 6th form) so I really don't have any control.

I do have every intention of contacting his DSN before Monday and seeing if maybe they can almost bully him into seeing the psychologist. They always offer when he is there, and he always politely declines. He needs to be told he is seeing them rather than asked if he would like to.

There was only one needle in his room this morning, so that means Lantus only after school yesterday, nothing with dinner and nothing with breakfast. What I don't know is what amount of Lantus he had last night. He won't write anything down, he doesn't test, so it's all a guessing game. I know at some point something will give, but I want that to happen sooner rather than later.

Thanks anyway for your advice, I do appreciate any input.