At a loss as to what to do

[Tina63]

Hi all, haven't posted for a while. As a quick recap, my 17 year old son is still ignoring his diabetes. He is now being moved to the transition clinic with next appointment due at end of August. Last HbA1c was 11.5.

He hadn't done a single blood test since mid May and I know from regularly checking his pens that he is skipping a fair few injections. Yesterday it became apparent he had gone a full 48 hours with no insulin. He still appears to be functioning fine, which I find bizarre really.

Yesterday afternoon I thought of a way to get him to test, hoping a high result would shock him into action. He is, I would say, addicted to Pepsi Max though Diet Coke does if he can't get that, so yesterday I got a text asking if I would buy a bottle on the way home from school. I decided to respond with a "Yes I will if you do a blood test and send me the result. No matter what the result is I will still buy it" (obviously knowing it was going to be high). He did respond a few minutes later - 17.7. I remained true to my word and bought the drink.

Later in the evening his friend arrived and they popped out for a while, so I decided to go and check his meter just to check he really had tested. It shouldn't have come as a shock to me to find that in fact his reading was 27.7 😱 That is actually higher than when he was first diagnosed.

So, what to do now??? I have left him pretty much 100% to get on with it, as so many people told me to, but I just feel so helpless and anxious about it all. I emailed his DSN a few weeks ago giving her all the info about him skipping injections, with a table of his daily insulin usage, but had no response. He has obviously lied at his last clinic appointment about his insulin use, as one type he hasn't touched for well over 2 months and his use for the 2 months prior to that was very sporadic, yet on the follow up letter he has obviously claimed to be using it 'most of the time'.

I'm not even sure if we are meant to contact his old DSN now that he is being passed over to the transition clinic (in a different hospital). I did feel quite let down with her not responding last time, then I go through the 'have I driven her insane with my whinging so she's not bothering to reply' type feelings. I have a friend with a T1 son 18 months younger and she was expecting a call from the same DSN a couple of weeks ago which never came, so of course she herself could be off sick or on a long holiday or something, I just don't know.

My son never hit DKA when he was diagnosed, we recognised the signs, bought a BG meter, tested him then phoned the GP who sent him straight to hospital. I do kind of think (maybe cruelly) that if he does hit DKA then maybe that will be the thing that brings him up short, but what a situation to be in. HELP!!!!!

 

[Barb]

With readings so high your son should be seen immediately.The end of August is much too far off. Does he understand the consequences of repeatedly running high sugars? It must be so hard having to cope with this as a teenager but falling into a hyperglycaemic coma is a very real possibility if he continues like this.

It sounds as though you are doing a brilliant job but ultimately control must come down to him. Can't understand the thinking behind a DSN who offers no support.

Hi all, haven't posted for a while. As a quick recap, my 17 year old son is still ignoring his diabetes. He is now being moved to the transition clinic with next appointment due at end of August. Last HbA1c was 11.5.

He hadn't done a single blood test since mid May and I know from regularly checking his pens that he is skipping a fair few injections. Yesterday it became apparent he had gone a full 48 hours with no insulin. He still appears to be functioning fine, which I find bizarre really.

Yesterday afternoon I thought of a way to get him to test, hoping a high result would shock him into action. He is, I would say, addicted to Pepsi Max though Diet Coke does if he can't get that, so yesterday I got a text asking if I would buy a bottle on the way home from school. I decided to respond with a "Yes I will if you do a blood test and send me the result. No matter what the result is I will still buy it" (obviously knowing it was going to be high). He did respond a few minutes later - 17.7. I remained true to my word and bought the drink.

Later in the evening his friend arrived and they popped out for a while, so I decided to go and check his meter just to check he really had tested. It shouldn't have come as a shock to me to find that in fact his reading was 27.7 😱 That is actually higher than when he was first diagnosed.

So, what to do now??? I have left him pretty much 100% to get on with it, as so many people told me to, but I just feel so helpless and anxious about it all. I emailed his DSN a few weeks ago giving her all the info about him skipping injections, with a table of his daily insulin usage, but had no response. He has obviously lied at his last clinic appointment about his insulin use, as one type he hasn't touched for well over 2 months and his use for the 2 months prior to that was very sporadic, yet on the follow up letter he has obviously claimed to be using it 'most of the time'.

I'm not even sure if we are meant to contact his old DSN now that he is being passed over to the transition clinic (in a different hospital). I did feel quite let down with her not responding last time, then I go through the 'have I driven her insane with my whinging so she's not bothering to reply' type feelings. I have a friend with a T1 son 18 months younger and she was expecting a call from the same DSN a couple of weeks ago which never came, so of course she herself could be off sick or on a long holiday or something, I just don't know.

My son never hit DKA when he was diagnosed, we recognised the signs, bought a BG meter, tested him then phoned the GP who sent him straight to hospital. I do kind of think (maybe cruelly) that if he does hit DKA then maybe that will be the thing that brings him up short, but what a situation to be in. HELP!!!!!

 

[Dizzydi]

Oh Tina my heart goes out to you x

How about writing a letter to him telling him how much you love him and explain you are writing now before it is to late to tell him. Harsh I know. Put in there your thoughts and fear. Tell him you understand he is an adult now and has sole responsibility for his own health, but explain you are finding it difficult to watch him killing himself before your very eyes.

I really do hope he sees sense soon, but Tina this could still take a while. Keep talking to us we are all here for you xxx

 

[Laureny019]

Hi, sorry to hear about this can't imagine how awful this must be for you all.

Obviously never having been in this exact situation, I can only really guess at things but it sounds like he's still 'fighting' the diabetes. I've been through the whole diabetic teenager situation & I think you can get caught up in a sort of angry 'why me?' type attitude. I never pushed it as far as this but for a time would only be doing 1 test a day & sometimes no tests at all, skipped injections here and there thinking oh well what difference can one make. To me it was like if I don't think about it, then I'm just a normal person like my friends. Unfortunately there was no sudden attitude change , just gradually realised it was myself I was hurting. Do you think a referral to a diabetes psychologist might help him, as they would then focus less on levels etc. & more on why he's not helping himself ?

Hope things start to change for the better but in the meantime I'm sure there's loads of people here who can give some good advice/ support x

 

[Newtothis]

Hi Tina, I'm really sorry to hear this and understand the anxiety and stress this must be putting you under; I really think that you're son is in complete denial and doesn't comprehend the consequences of his actions. He is a young man who simply wants to do what any other 17 year old wants but he has to realise that his diabetes isn't going to go away but if he buckles down it doesn't need to get in his way of leading a happy and fulfilling life.. Have you spoken to any of the advisors on the Diabetes UK website to get some advice or could your daughter speak to him - sibling to sibling...

As a mother to a teenage son I share your heartache - you want to keep him safe but you can't run his life; you're doing a brilliant job and writing him a letter is a brilliant idea..keep strong. Sending your much love and a big hug.... x

 

[robofski]

This must be so difficult for you to deal with, I really feel for you.

I don't get any acute symptoms if I run with high blood sugar, like your son appears quite normal without injecting and I sometimes find myself thinking 'I feel fine so why bother with all the hassle of injections' which I suspect is what's going through your sons mind, I am however aware of the long term damage which is why I do put up with the hassle!

I know where your coming from in thinking DKA might kick him into action, it's not a nice thing to think but I understand why you think it, how hard for you to be so worried. I hope he see's the light sooner rather than later and DKA isn't what it takes.

Dan

 

[Robster65]

Hi Tina.

I've not posted for quite a few weeks but your post has spurred me to do so.

As has been suggested, your son is basically self-harming. Using his 'non-compliance' as a way of finding control in what he sees as a situation that's been inflicted on him.

I lsupport Di's suggestion of a letter. I think you may have done this before, but maybe another go, worded more strongly.

He needs a psychologist quite urgently, and maybe that's a route you could try and get some help with. Perhaps have a word with your GP as to the worry it's causing you and they may be able to suggest some means of getting him help. That way, they're advising you as a patient, rather than discussing his care, which they obviously can't discuss.

Could you contact the D clinic and ask which DSN is on duty next and have a word with her? You may find they all share info and are aware of the situation. There must come apoint where they can be more persuasive. I don't think force can be used unless a patient is deemed mentally ill and unable to make rational decisions. Even then, probably not.

All you can do is pester. I'm sure it will pay off eventually but they have limited powers. At least you'll know youve done all you can.

I'll keep popping in to see if anything changes. Good luck. 🙂

Rob

 

[Tina63]

Thank you everyone for your kind replies. It really does help to have you lot to talk to and express my anxieties.

Well I do with hindsight believe the reality of the 27.7 reading yesterday afternoon kicked him into action last night/this morning. He got up as normal, full of the joys of spring, and you wouldn't think anything was wrong. He works 11-8 on a Saturday, 9-5 on a Sunday and is at school sort of part-time in the week doing A levels. He and I travel into town on the bus on a Saturday morning, then he walks on to work from there whilst I do shopping and come home again. I saw it as a positive thing that he was chewing the green inner cap of his pen needle as we got on the bus, a habit he has had for some time(!) so I took that as a positive sign he had injected this morning. He did tell me he had had to get up twice in the night for a drink (and I heard him go to the loo at 4am - no surprise there) but I resisted the urge to pass judgment on that. Once I got home I went to investigate his pen levels.

It seems he took new pens/cartridges for all his pens last night even though only one was empty. He had skipped his Lantus for well over a week, but the appropriate amount of that has gone from a new pen, over 30u of Novorapid has gone too and his M3 dose from this morning. That is a scary amount of Novorapid given that his ratio was still 1:10, but then his friend was round last night and there are Cadbury's Eclairs wrappers all around his room so no doubt he had some of those, so maybe 30u wasn't such a scary amount given his 27 reading, dinner, snacks he always finds and the sweets.

Oh and I forgot to say he asked me this morning if I had any spare Dextrose tablets and if not, could I buy some more in town. He was actually given Humilin S for afternoon snacks/dinner time a while ago in place of the Novorapid, but this was causing problems if he was home later, or at weekends when he works later, so he seems to have dropped using that and when he can be bothered, going back to the Novorapid.

It is so hard because I only know what I know about his non-conforming by sneaking around checking his pen levels every day once he is out. I have been keeping a written note for about 3 months now. He always seems to skip Lantus for 2 or 3 days when a pen finishes (which is about every 8 days) but this last couple of weeks he just randomly stopped using it when it got down to about 120 units 8 or 9 days ago and hadn't touched it since until the new one last night. I didn't actually check his meter today, but I don't imagine he has used that at all. Given that yesterdays reading was the first since mid May and only done through bribery, then I don't imagine he would do one voluntarily.

I guess I do need to speak to his DSN. I am just not at all confident on the phone and hate making calls, hence how I have used her email address before, I just found that easier. She won't be his DSN once he starts the new clinic next month. His consultant will continue to see him at least at transition, so if at least messages can get through to her then that's a start. He told them last month he was using the Humilin S, just forgetting occasionally, which is completely untrue. He hasn't used it for well over 2 months and before that it was very sporadic. I asked a while ago on the phone for him to be referred to the psychologist, I was told he would sit in on his next appointment and he would then take him off for a chat if it was deemed necessary. He wasn't at the next appointment. The appointment following that, they asked my son if he would like to see the psychologist, and of course he said no! So that was that! Grrrr!

His sister wrote him a long letter a while ago but he only read a few lines and got all huffy with her and told her to keep her nose out and then wouldn't speak to her for a good few days. They have always got on fantastically well so that was horrible for her when she was only trying to help. I think I will write him a letter tomorrow. I have a day on my own, so time to sit and think carefully what I want to write. Even if he strops at the first couple of sentences hopefully he would carry on and read it some time later. It's just going to be difficult to know exactly what to say as he doesn't know I know what I know. I feel if he found out I check his pens every day he would either hide them or start shooting insulin down the toilet. At least this way I know exactly what is going on even if I can't do anything with the knowledge.

Time to get my thinking cap on I guess!

Thank you again everyone for your input, I really do appreciate it.

Tina

 

[robofski]

Maybe as you say 27 made him sit up and take note, I hope so! Hope this is the start of a more responsible attitude for him.

 

[Ellie Jones]

Tina

I shall apologise first, as I'm going to be very blunt!

You need to back off completely....

He needs space, privacy and trust!

He's probably rebelling more than he's in denial, as far as he's concerned, mum sneaking behind his back and spying on him, he's being treated like a child, so he will respond like a child... His anger over his sister letter underpinned all this for him...

He knows you'll worried sick about him, he doesn't need you to write a letter to tell him, he's likely to see this as further prove he's in your eyes just a naughty little boy who can't be trusted!

It seems that he's got the noggin to keep himself out of real danger, as he did correct, given the space, the privacy and trust to get on with it all... He probably work his way through the denial aspect a lot quicker, he needs to build the confidence that he can control his condition...

 

[Northerner]

...It seems that he's got the noggin to keep himself out of real danger, as he did correct, given the space, the privacy and trust to get on with it all... He probably work his way through the denial aspect a lot quicker, he needs to build the confidence that he can control his condition...

Not how I read it at all Ellie. Tina HAS backed right off and he simply not complying with his treatment because he is 17 and probably feels it won't be having any lasting effect on him and that he is keeping it under control (or rather, he is avoiding knowing how poor his control is i.e. in denial). His HbA1c is almost the same as mine was when I was diagnosed 😱 Every approach has been made so far, but he shys away from anything that will confirm he has a problem e.g. psychiatrist, being truthful to consultant/DSN, testing, getting angry when concern is shown.

 

[Robster65]

Not how I read it at all Ellie. Tina HAS backed right off and he simply not complying with his treatment because he is 17 and probably feels it won't be having any lasting effect on him and that he is keeping it under control (or rather, he is avoiding knowing how poor his control is i.e. in denial). His HbA1c is almost the same as mine was when I was diagnosed 😱 Every approach has been made so far, but he shys away from anything that will confirm he has a problem e.g. psychiatrist, being truthful to consultant/DSN, testing, getting angry when concern is shown.

Agree wholeheartedly.

Rob

 

[Pumper_Sue]

My personal view of all this is that Tina needs to think about writing a letter to his consultant DSN and the GP.

Asking who is going to take responsibility for the damage being done to her son due to lack of action regarding his total non compliance with his diabetes.

Make bulit points of the number of requests/emails sent the non admission to hospital no mental health back up.
Just list everything thats been going on and ask what they are going to say at his inquest as you feel this is the way things are going to end up.

Last bit is a bit drastic but they might pay more attention.

 

[trophywench]

I thought of your son today Tina, at the DUK Big Event - I was talking to a young girl aged ?mid 20's and she said she'd done DAFNE. Which was a revelation to her. She'd spent 15 years in denial because she was 'the only one' - yet there she was suddenly in a room full of other diabetics, around her own age. None of them appeared to have 2 heads, some of them liked the same bands, the same sort of clothes - or chaps it's probably football teams or F1 drivers - I dunno! - On these courses, you do talk about your problems/difficulties/successes/failures - and she suddenly 'got it'.

It takes just one person being truthful to start the ball rolling. And then you discover 'everybody' has forged blood sugar diaries to take to the clinic, 'everybody' has said 'Oh bother Dr, I have left my diary at home, how silly of me', 'everybody' has done whatever when they've had a night on the pop, 'everybody' has said they were hypo to have an excuse to eat a box of Jaffa cakes ...... or whatever it might be.

Suddenly she discovered she was in fact - NORMAL. OK a normal diabetic - but NORMAL. She walked away from it owning her diabetes for the first time ever. It was ENABLING.

There has to be something that would ENABLE your son ......

 

[Tina63]

Tina

I shall apologise first, as I'm going to be very blunt!

You need to back off completely....

He needs space, privacy and trust!

He's probably rebelling more than he's in denial, as far as he's concerned, mum sneaking behind his back and spying on him, he's being treated like a child, so he will respond like a child... His anger over his sister letter underpinned all this for him...

He knows you'll worried sick about him, he doesn't need you to write a letter to tell him, he's likely to see this as further prove he's in your eyes just a naughty little boy who can't be trusted!

It seems that he's got the noggin to keep himself out of real danger, as he did correct, given the space, the privacy and trust to get on with it all... He probably work his way through the denial aspect a lot quicker, he needs to build the confidence that he can control his condition...

I have to say this response really upset me. I do appreciate you are only trying to help, but I haven't posted on here as much recently as I would have liked as I felt before a couple of peoples' answers were very harsh and I found that hard to handle.

I am naturally a really soft person, a natural 'earth mother' and all I want is to protect my son and help him. I HAVE completely backed off. I do not remind him to test, I do not remind him to inject, I do not ask him if he has done either, I do not tell him the carb count of his meals, I don't do anything. This hurt me so much inside to do, as it didn't come naturally to me, but my husband, his family, and a couple of friends (male, not female I must say - males seem to naturally be able to switch off more easily) said I had to just leave him and let him get on with it, and let him take the consequences. It still took me a long time to accept this, certainly the consequences bit, but eventually as I was willing to try anything in the hope of him changing, I bit my tongue and let him get on with it. I told him too it was his responsibility from now on to sort out his own repeat prescriptions. It didn't take long for what I knew would happen, complete non-compliance. I used to remind him every morning to test, and though some days he would really sound off at me, at least he did it. Now he simply doesn't. And this has gone on for some months now.

I don't discuss his diabetes with him anymore, UNLESS he brings the subject up, and of course that is very rarely. Even then it is usually about him asking me to order more insulin (which of course he is perfectly capable of doing yet says jokingly 'Oh please Mummy, can you do it, please.......!), or him asking when his next appointment is. I just ask briefly after a consultation how it went (leaving it many hours or a couple of days before asking). He then usually tells me his HbA1c and a little of the conversation, often not entirely truthful, which is borne out when the follow up letter comes to us a week or two later! I do accept in the early days it was ALL I could talk about and for many many months I took full control of carb counting and checking his meter/diary etc. We were told to/taught to as a family. In fact the newest leaflet issued by the hospital about family conflict in teenage years states the fact that the teenager/young adult who does best with diabetes is one who has family help/support rather than leaving them to their own devices. It suggests parents view the meter daily and diary on a weekly basis and discuss results and patterns and try to spot trends etc and work through things together.

He is completely unaware I check his pens, so I don't see that from that he feels a 'naughty boy' and the letter from his sister was probably the back end of last year. She wrote to him as she lives away at uni, but loves him dearly and they have a very close bond. She was getting very concerned when his HbA1c started rising (6.1 June '11, 9.1 Sept '11, into the 11/12's by Christmas) because of course she always asks how he is and how things are going and she like I found statistics about retinopathy etc with HbA1c's like that and it scared the pants off her. She tried to I guess frighten him into submission. Right or wrong, it scared her and she just wanted to try something, anything, to get him to take it more seriously.

I so 100% appreciate my daughter and I can't possibly imagine what it can be like to live with it every day like he and you all have to, but equally, you can't imagine what it's like from this side worrying yourself sick that something is so out of your control when in fact it certainly could be managed so much better than it currently is being. We proved that last year when working as a team we got his HbA1c down from a starting point of 15.8 to 6.1 in 6 months. We carb counted everything, he of course knew all the basic stuff, and I didn't bother telling him his lunchbox value after a few weeks as he knew what was what with basic stuff and to look at labels on pre-packed food. I did carry on weighing and calculating main meals though, rice, pasta, potatoes etc and looking at jars of cook-in sauces etc, and as I said, was proved this was working with such a brilliant HbA1c last summer. I took it as a mini personal triumph when we got it that low. Now I look at it as much my failure as his that it has got out of control. I know logically it isn't my fault, but I can't help feeling guilty about it.

So, here I am at 3am pondering what to do about it all, just like I was at 3am last night when I should be asleep. There is no easy answer, and I know at the end of the day I can only do what I think is best, but at the moment I just don't have a clue. I did lie in bed for an hour before getting up and coming on here, mentally constructing a letter, but I just don't know whether that's the right approach. I do think I will definitely email his DSN again before Monday and ask her to make sure the consultant is made fully aware of what is going on. I WILL be checking his pens again when he has gone to work in the morning to see what he had last night. We had a very low carb meal last night, so that would have helped a little too. At least by checking his pens I am aware of what is going on so that if I ever find him collapsed I will have some idea whether it is due to hyper- or hypo-glycaemia. That to me is very important.

And so to face another day......

 

[Tina63]

Thank you everyone for your replies and suggestions/comments. I often think if only he could be thrown into a group of other type 1's it might make him realise he is not alone, but he won't even remotely entertain the idea. School offered early on to set up a meeting with any other willing T1 teenagers (there were about 6 in his school) or buddy him up with a well controlled 6th form lad when he was in year 11, but of course he declined. Our team invite him annually to their teenagers day out at a theme park, but he comes out with a derogatory 'Why on earth would I want to go out with that bunch of ******s for' (insert any teenager's derogatory name you like here😱).

I thought last year if only they set up a session which was disguised as a normal clinic appointment, therefore not optional, where several teenagers were put in a room together and maybe taught diabetes stuff or just shown positives, that it could be so beneficial to them all. In fact a couple of days, so they have to start talking to each other and dealing with testing/injecting all together as a group. They do the camps for the younger children, but again you are not going to get a 17 year old who hasn't grown up with it to agree to go on such a thing.

As I have said before, I have a friend locally who has a T1 16 year old. Our boys do actually know each other, but of course are different year groups, have completely different social groups and interests, so have no desire whatsoever to get together. At least I have his mum to talk to, and it must actually be such a relief to her to have someone who truly 'gets it' from this side of the fence too at long last. Her boy is doing no better than mine, but he has grown up with it since being 3. He is being a little so-and-so with his diabetes at the moment too. They do still take 100% control though. They make him test and inject in front of them, Mum even prepares his pens for him, dials the units up etc. So compared to her I am not at all controlling. Though I continually reminded him before and asked for his meter, I never ever got involved with his injecting. He just did all that himself from day 1. I guess that's the difference of being diagnosed at 3 and being diagnosed at almost 16.

 

[Northerner]

Tina, I really do feel for you my dear {{{{Tina}}}} It's interesting what you say about the mail members of the family who do not seem to realise the seriousness of things. This attitude probably reinforces in his mind that you and his sister are making a big fuss over nothing. Is there any way that they could be persuaded that this is very, very serious? Perhaps they could meet with other T1s who have both good control, and ones who have rebelled big time at his age and are now having to deal with the consequences?

Diabetes is such a strange disease in that, especially with a T1 child/young adult, you want them to feel that they are capable of anything (and may appear perfectly fit and healthy), but they also need to be vigilant and respectful of thier disease if they don't want to end up having laser surgery or dialysis in their mid-20s.

If only diabetes in these teenage years would grow a great big spot on their chins if they don't manage themselves well, where they could see the benefits immediately of keeping good control, rather than some vague threat of future horrors that 'only happen to other people',

 

[Tina63]

If only diabetes in these teenage years would grow a great big spot on their chins if they don't manage themselves well, where they could see the benefits immediately of keeping good control, rather than some vague threat of future horrors that 'only happen to other people',

Interestingly Northerner, 6 years ago my son had this humongous boil full of pus on his temple. It was the size of a grape and eventually burst (we were abroad on holiday) and carried on weeping so immediately took him to our GP on our return home a couple of days later. Way back then (4.5 years prior to diagnosis) our GP wanted a urine sample off him saying boils are a sign of uncontrolled diabetes. When we returned the sample to the practice nurse she scoffed at his request/reason for the sample, saying there's no way a child of 11 would be diabetic 😱 but isn't that interesting that all those years later the diagnosis came. I don't suppose it's even remotely related to his case, but interesting all the same.

I do notice his skin seems to suffer often when his control is bad, but then my daughter gets spotty if she eats chocolate more than just occasionally!

 

[Barb]

Being a rebel

Really feel for all you are going through. As a last ditch attempt to make your son see reason perhaps you could leave a copy of this interview with the author Sue Townsend lying around.

She wouldn't conform and went her own way when diagnosed with diabetes. And now, sadly, is blind and recently had a kidney transplant (donated by her son).

You could point out that your son is perfectly entitled to do his own thing but there are far worse things than diabetes and if he continues to ignore his control, he could well experience them.

Sending you lots of support and best wishes.

http://www.guardian.co.uk/theobserver/2010/aug/01/sue-townsend-kate-kellaway

Hi all, haven't posted for a while. As a quick recap, my 17 year old son is still ignoring his diabetes. He is now being moved to the transition clinic with next appointment due at end of August. Last HbA1c was 11.5.

He hadn't done a single blood test since mid May and I know from regularly checking his pens that he is skipping a fair few injections. Yesterday it became apparent he had gone a full 48 hours with no insulin. He still appears to be functioning fine, which I find bizarre really.

Yesterday afternoon I thought of a way to get him to test, hoping a high result would shock him into action. He is, I would say, addicted to Pepsi Max though Diet Coke does if he can't get that, so yesterday I got a text asking if I would buy a bottle on the way home from school. I decided to respond with a "Yes I will if you do a blood test and send me the result. No matter what the result is I will still buy it" (obviously knowing it was going to be high). He did respond a few minutes later - 17.7. I remained true to my word and bought the drink.

Later in the evening his friend arrived and they popped out for a while, so I decided to go and check his meter just to check he really had tested. It shouldn't have come as a shock to me to find that in fact his reading was 27.7 😱 That is actually higher than when he was first diagnosed.

So, what to do now??? I have left him pretty much 100% to get on with it, as so many people told me to, but I just feel so helpless and anxious about it all. I emailed his DSN a few weeks ago giving her all the info about him skipping injections, with a table of his daily insulin usage, but had no response. He has obviously lied at his last clinic appointment about his insulin use, as one type he hasn't touched for well over 2 months and his use for the 2 months prior to that was very sporadic, yet on the follow up letter he has obviously claimed to be using it 'most of the time'.

I'm not even sure if we are meant to contact his old DSN now that he is being passed over to the transition clinic (in a different hospital). I did feel quite let down with her not responding last time, then I go through the 'have I driven her insane with my whinging so she's not bothering to reply' type feelings. I have a friend with a T1 son 18 months younger and she was expecting a call from the same DSN a couple of weeks ago which never came, so of course she herself could be off sick or on a long holiday or something, I just don't know.

My son never hit DKA when he was diagnosed, we recognised the signs, bought a BG meter, tested him then phoned the GP who sent him straight to hospital. I do kind of think (maybe cruelly) that if he does hit DKA then maybe that will be the thing that brings him up short, but what a situation to be in. HELP!!!!!

 

[Northerner]

Yes, it is interesting (and of course very true) that poorlycontrolled diabetes will give an ideal environment for infections, boils etc. to proliferate. Many people get boils/abscesses in the armpit - in fact I went to my doctor about 2 years prior to diagnosis with such a problem. The GP said it was just a blocked sebaceous gland and no treatment was offered (or tests for anything). Maybe if I'd mentioned the other vague symptoms I had at the time (constant thirst, frequent peeing) might have led him to test me, but having had some dealings with him soon after diagnosis I doubt it (he's the surgery's 'GP with special interest' in diabetes. I quickly changed to another GP soon after diagnosis. I find it appalling that some GPs are unaware of the possibility of diabetes in children - it suggests that they think there is only one type 😱 Type 1 is relatively rare in the population, but a doctor should at the very least know it exists!

Perhaps instead of a spot then, something like an ever-increasing 'trout pout', starting with a relatively benign-looking 'Mick Jagger' and leading to a 'Pete Burns' if not promptly brought under control!