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D Day

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Here's hoping this is the start of your son getting back on track and dealing with his condition. Best wishes to you all for the next few weeks and onwards x 🙂
 
Interestingly, William gets very bad tempered when he's high - so much so that we suggest he tests if he's being particularly unreasonable 🙄 often it does show a high.
 
Sounds like progress - fingers crossed the tweaks to his doses help get his bg levels down enough to convince him it's worth the effort to test, record, assess & tweak. Fingers crossed this is the start of a good upward spiral for you both. Xxx
 
Fingers crossed that you are heading toward a better place Tina. And I'm another who gets VERY grumpy when high. Partly cos I hate seeing the numbers, but more than that - it does seem like a physiological reaction because the grumpiness can come first and the test point to the reason.

Hope he feels better all round on the new doses.
 
Fingers crossed the HbA1c continues to come down Tina xx
 
I have the upmost respect and admiration for you - as a mother of an 18 year old lad I cannot imagine what you and you're son are going through; I really hope this is a new chapter and things start to improve; throwing you both a big hug {{{}}} Amanda xx
 
Robster65 said:
You may find that, as a family, you'll need to review what sorts of foods you buy so that you're all eating what he needs together.

Not sure how acceptable that would be but it would help me to feel I wasn't being singled out.


Rob
Click to expand...

Thank you everyone for your lovely replies and continued support.

Re the food thing Rob, we do eat as a family, all eat the same, it's just the odd stuff I buy in specifically for his lunchboxes. At the outset we were told he could carry on totally as normal (of course he was on Novorapid then) and carb count for his meals and the hospital even supplied us a sheet of what was considered a 'normal' school lunchbox - sandwiches (no mention of type of bread or fillings), crisps, piece of fruit and chocolate biscuit/cake bar. As that was pretty much what he had, I just carried on buying that but generally making the cake/biscuit a cereal bar.

The problem is as most mothers do, I buy the cereal bars and crisps in multipacks. They are of course left accessible in the kitchen. After we have eaten our main meal, pudding, if any, is a yoghurt and/or fruit. My son goes along with that, but invariably within half an hour he claims to be hungry and is ferreting around for food. Of course he won't go for the yoghurt/fruit option, but starts helping himself to the crisps and cereal bars. This carries on throughout the evening, with the odd bowl of cereals thrown in. Of course one thing per evening isn't enough, he is up and down constantly, even after we have gone to bed. Invariably within 2-3 days all the crisps and cereal bars are gone and I end up buying more. I need to learn to stop doing that.....! (or hiding it all)

Though he is on fixed doses of both Humilins, we have never been told to restrict his carb intake. I think I am going to try my damndest to tighten the carbs in his meals though, being mindful too though that with dosages being upped, his potential for hypos will become more of an issue. I am also very aware I believe he has a massive fear of hypos still, so if too many of those start he may back off injecting again. It's a fine balance. I will address these issues in my email to the DSN at the end of the week.

I took his friend home last night and did try to ask on the way home what went on at the consultation, knowing in advance he wouldn't want to be asked (do I ever learn???) and though he got cross with me he did say they wanted to admit him, but said they did have an issue with beds and as he showed a positive attitude towards change they did agree to let him off the hook for now. It came as no surprise to me though that he didn't test on arriving home or before dinner as they had asked, but I'm sure that was a normal reaction from him still steaming at the ears! I am confident that by bedtime he would be back on track with the testing. He did have his teatime Humilin S, I know because I took all his pens to the hospital, lids on them all (he never puts lids on) and when I went in his room late evening the lid was off and a needle attached.

So from today I am going back to letting him get on with it on his own, I will just help myself to his meter now and then when he is out of the way to update his diary (he did agree to that in the consultation apparently) but try to keep my mouth zipped!

Thanks again everyone!

Tina
 
Hi Tina,
just a sugestion for you.
If he eats all his packed lunch stuff during the evening like that, then he goes without. Just replace with the carb equiv of bread 😉 Tell him point blank you are not made of money so that's the weeks supply gone so no more.
 
I suspect he is doubling his food intake (certainly carbs-wise) with snacking. Possibly more than doubling it.

60g's worth of spuds in a dinner is a pretty hefty plateful, but a bag of crisps and a cake bar could easily be 55g.

Not that there is necessarily a problem with a higher carb intake if the insulin is balanced against it (though it can be trickier to manage). Hopefully his team will be able to take the increased level of results and move toward getting the balance right, though it still seems that there is a 'lightbulb moment' to be had for your son in realising that the person who benefits most from more effort in managing D and the better control that gives is him both in the long and short term.

It took me many, many years to really 'own' my targets rather than seeing them as some ridiculous (and impossible) burden being placed on me by medical professionals who had *no* idea what it was like to live with this stupid thing day in, day out.
 
Yes Sue, that's what I think I will do, and hide all the spare crisps/bars etc in my room.

After he went off to school I went for a look at his meter and it should have come as no surprise to me that he didn't test at all yesterday evening/night, but more disturbing is the fact he hasn't tested this morning either. I am not happy! I am not going to say or do anything, not for the time being anyway. He has injected both his insulins last night and his mixed this morning, so at least he is doing that.

I will check his meter again tomorrow and if I find he still hasn't tested, I will contact his DSN and ask her to phone him and give him an ear bashing. Getting a bit fed up with it all now.
 
I think you're right that the DSN needs to be the one with the stick. She can get through to him about the seriousness of it and it doesn't matter if he hates her for it.

I think, however you acheive it, that removing the snacks is the way forward as long as everyone in the house can resist the temptation while he's around.

Testing is definitely the key. But only the hospital can show him, in a safe environment, what happens if you inject and eat randomly without testing and knowing what to inject.

He needs to have a few hypos, treat them and then see how to control his BG without going there. Only they can get him to do that.

Keep unloading on here. Don't want you sliding under with it all.🙂

Rob
 
Tina, I don't know your son, but I do know if I was in his position I would be a confusing mixture of hugely angry at being stuck with diabetes, and absolutely terrified about the mess I was in. And I'm incredibly grumpy when I'm high too.

Is there any psychological support available to him via the diabetes team? Does he know anyone else with diabetes he could talk to? Even on Facebook? Diabetes can be lonely at the best of times, but when its all going wrong and you have no one you feel you can turn to, it's truly awful. (And that's no criticism of you or his family, it's often much easier to talk to a stranger about this stuff rather than someone who's there day in day out).

I haven't been through the extremes of what your son is going through, but I have had periods when I've wanted to just give up being diabetic. If its helpful to hear about someone elses's experience, I wrote about it here http://www.shootuporputup.co.uk/2011/01/diabetes-burnout/ and the comments on this post are an interesting insight into people who've been in exactly the place your son is now, and survived: http://www.shootuporputup.co.uk/2011/03/the-invisible-diabetics

Best of luck to both of you
 
Another 24 hours and still no testing - grrrrr! I have spoken to his DSN who has basically said there is nothing any of us can do, we just have to wait for him. I suppose she is right. If he doesn't want to do it, who can make him? She has said to tell him she called to remind me about emailing his levels over the weekend and to tell him she hopes he has got lots of readings for her and that the new doses are working better for him. I will mention it later, but he will go off on one at me, I am sure.

I have today made a note of all his pen levels, just to be sure that he is at least injecting. He was skipping the odd Lantus before but I know he had all 3 insulins within the first 24 hours of coming home from clinic, so I just want to keep an eye surreptitiously on the levels of all 3 to at least get some reassurance.

Re the diabetes holiday ideas, I'm afraid he is at that age where anything like that mentioned he just laughs in my face and says really derogatory things. Our team offer days out (Thorpe Park etc) but he wouldn't even remotely entertain that last year. Maybe if he had been diagnosed much younger and brought up with such things then he would have gone, but not now. He won't agree to talk to any other T1s either in the flesh or on Facebook etc, he just isn't interested. School offered to arrange it, but he refused point blank. I know he just wants the whole horrible thing to go away and I still think he is burying his head in the sand.

I might not be happy about it, but I am now pretty much of the opinion that I really do have to let him get on with it in his own way, and just be there to pick up the pieces. It causes so much friction if I as much as mention one word to do with it, so I am learning to keep my mouth shut! I think the info from the nurse I will just write down and leave on his desk to see when he comes in. Damage limitation exercise!

Fortunately, I am a real 'happy go lucky' type of person, so though frustrated, it's not truly getting me down, for that I have to be eternally grateful. I could see this grinding many a person down into the depths of despair. At least I have you lovely lot to talk to! Thank you.

Tina
 
Sorry to hear that he's still not testing Tina :( There's obviously some vaguely-formed notion at the back of his mind somewhere that it might go away, plus I also think he is scared of the numbers because they confirm he has it. I guess it's hard to believe when you are his age that this is something you'll have to deal with for life, or until there is a cure. For heaven's sake don't tell him that a cure might be just a few years away, because I can imagine him stopping altogether and hanging on for it! 😱

You're doing all you can, I hope he starts doing his bit soon and makes life easier for everyone - most of all, himself 🙂
 
So sorry to hear it isn't going well :(

I agree with you and Rob, it's the DSN who has to be the "baddie" here.
Unfortunately, I can't give you any sensible advice 😱, but I have to say - you have the patience of a saint!!!! I would have thrown a huge "paddy" by now (which I have to admit, I have already done with Carol 😱)

Lots of hugs
 
A bit of progress, 3 tests in past 24 hours. All over the place, from 17.9 to 4.7.At least we are getting some data to work on now. Long may it continue.
 
Tina63 said:
A bit of progress, 3 tests in past 24 hours. All over the place, from 17.9 to 4.7.At least we are getting some data to work on now. Long may it continue.
Click to expand...

It's a start! Have you any idea how the numbers relate to when he ate?
 
Northerner said:
It's a start! Have you any idea how the numbers relate to when he ate?
Click to expand...

Well he was 17.9 when he came in from school (3.30) and at that point had 16u Humilin S. He would then have started snacking, crisps, cereal bar, cheese & crackers, I don't exactly know what, but anything he could get his hands on. I have put away the majority of 'spare' lunchbox stuff but left an odd pack of each thing out in case he needed something in a hurry. We would normally then eat our main meal around 5.45-6pm but we were a bit later that evening and he tested at 6.30 just before eating, to find he had dropped to 4.7 despite snacking in those 3 hours.

Dare I confess we then had chip shop? He had donner meat and chips. He didn't test at bedtime, so unfortunately I don't know what happened after dinner, but his friend came over and they went out to the shop across the road and I wouldn't be at all surprised if they had come back with a load of chocolate between them. They just disappear up to his room complete with carrier bags (always with a bottle of Pepsi Max in but no doubt more than that) and that's the last we see of them for the evening.

Anyway, on waking the next morning he was 11.4. He would have had 30u Lantus at bedtime too (and I know he did, I am keeping an eye on levels in pens).

I guess with this erratic eating though, we are never going to know really what exactly is going on. He hasn't been anywhere near the 4's for quite some time though, so at least the doses of Humilin must be getting somewhere near where they need to be. I don't actually understand how the Humilin S works, and there is nothing useful in the leaflet to tell you either.

Unfortunately, he didn't test on coming in from school last night though, nor before his dinner, so I only have this one set of figures. Dinner tonight will be a much healthier affair with plenty of vegetables etc, so it will be interesting to see how his body copes with it. I will keep a watchful eye.
 
I should have started that last reply by saying he had 2 slices of toast for breakfast that day, and his lunchbox consisted of a round of chicken sandwiches, a bag of crisps, a cereal bar and an apple. He has sugar free drinks all day too. He does tend to eat the vast majority of his lunch at morning break though, just keeping an odd bit back for proper lunchtime. He had 34u Humilin M3 before breakfast, but didn't test, so don't know what he was on waking that day. The 17.9 was what he was when getting in from school following all that.
 
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