Letter from hospital at last

[Tina63]

As a young diabetic myself I went through exactly same phase when I was 17/18 and so did my diabetic brother. How long has your son been diagnosed? I was diagnosed at 5yrs old and when I hit late teens I just felt I had had enough of the condition and I stopped doing my injections and bm's. Mum and dad doing anything about my diabetes made me get more and more distant from them but when I was threatened with even a date to be taken into hospital for a 2 weeks stay that made me sit back and realise what I had been doing and I could of developed DKA. I have had a dear friend sadly lose her life from DKA so this scared the hell out of me. I always knew deep down that my parents were trying to help and protect me but constantly it being there just wound me up.

Hi Kim

Thank you so much for giving me that from your perspective. My son has only been diagnosed for just under 18 months so it is still all relatively new to him. I know there is never a good time for it, but just months from his GCSEs and being a hormonal teenage boy too, I fe;y the timing of his diagnosis was atrocious. We realised what was wrong with him before diagnosis so fortunately he never went into DKA then, and does seem to have a very high tolerance level of being high yet claiming to feel ok, so he doesn't have any personal 'nasties' to relate back to. I do think the hospital threatening to take him in a couple of weeks ago has shaken him up a bit, but I do worry that when they ease off a bit he will just slip back. I also worry about the transition to adult clinics, whether then they will only see him twice a year and he will slip right back. How often were you seen as a young adult when first moved to adult services, and how did that compare to the children's clinic? He is normally seen every 3 months, but is being seen at least monthly at the moment, with weekly contact from his DSN and odd visits to just her in an office. He will almost certainly move over to Adults in January and I do worry he will then slip through the net.

Thank you for the kind offer of your brother's support. Unfortunately my son wants nothing to do with anyone/anything diabetes related, he refuses to look on any websites/forums etc, and is fuming if he ever catches me on here. He has no idea (well I don't think so) that I write about him - I am sure I would have got it both barrells by now if he did - I think he thinks I just look for tips and information, nothing more.

I did go to one of the meets earlier in the year and he found out I was going 24 hours before and just went off on one at me. I offered to bring him along, but of course he wouldn't even consider the idea, and was mad that I was going saying he didn't understand why I was getting involved. He seems to like isolation, whilst I have found that the hardest thing about it all. I must bore the pants of my closest friends but I just feel the need to find out all I can and try as hard as I can to help him through it.

I do hope, as others have said, that with a few years of maturity he will one day realise my intentions were all good, I just don't want to ruin our relationship in the meantime. I just don't want him succumbing to nasty side effects in the meantime.

Tina

 

[Monkey]

I've only recently read a bit of your story, but I really hope your son's team can manage his transition to adult care considerately.

Personally, I found it very difficult going from the lovely little 'family' of paediatrics to the adult care, and still wonder (12 years ago, I think - so it's hazy!) if there's been any change in how it's handled. Do you think your son's DSN would chat thro with you what the plan is, if there is one?

I'm probably echoing what's been said, but I think it's almost inevitable that the teenage years bring some degree of not taking diabetes seriously. It makes me so worried now when I think about my teenage years and how little I bothered at times.

 

[Kim23]

Hi Tina,

I didn't go to a normal adult clinic from paedatrics as I was able to get funding for a pump at 17yrs old and I am under Bournemouth clinic for this. But I am seen every 3 months and I regularly get phone call or an email from my DSN. My brother though went to the adult clinic from paedatrics and he didn't have a problem either. It is a slight change to how they are but in a way at 16+ you want to be treated like an adult. When a consultant says they want to see you in 6 months but you feel sooner than that would be better just say so - they can't really say no!

Your are your own individual and if you want to attend any events then you should just for your own mind. I am speaking at a couple in June in Southampton which is my hometown. JDRF discovery day at Tornbee School in Chandlers Ford and DWRF Diabetes Wellness Day at The Novotel Hotel. These days are fantastic and you gain such knowledge from each other and insight into alot of different advances in treatment and towards a cure.

From what I have learned through my diabetes I know help youngsters with the condition using ponies and whenever diagnosis is it effects the whole family. Siblings and parents can feel put out but you can all find ways of dealing with it and I'm sure he will in time. My poor brother had to deal with me being the 'diabetic' one for 8 years before he was diagnosed.

Kim x

 

[MeanMom]

Hi Tina

Only just caught up with this as I have been away. I am so sorry your son is still in denial and is treating you so badly if you nag him.

However I personally am a great believer in the power of the 'nag' and have grown a quite thick skin over the last year or so! Even K (who has first hand experience of diabetes complications, as you know) had been known to resist testing and/or injecting. She has also taken to secretly eating food lately - although I believe she does usually inject it's not always the amount I would have suggested and she has had hypo's as a result (how I found out )

I think your nagging does work - the 'breakfast incident' is an example. I know it's hard and he certainly should not be giving you the verbal abuse he is doing, but I'd rather my daughter was alive and hated me than the opposite (sorry to be brutal).
K and I made a deal yesterday (about her eyes) She is allowed to moan and complain about drops, blurred vision, lack of make up etc and I must listen and (try) not be cross, but I am allowed to tell her that it is only for a short time and it will be worth it in the long run. It was her idea.
Tina I know a 16 year old boy is different from a 13 year old girl, but my advice, for what it's worth, is keep nagging. If you have cooked him a meal tell him there will be none for him unless he at least injects for it - and that he cannot fill up on something else. I know he buys his own food but have a 'no food in the bedroom' rule (hypo treatments excepted).
Sorry, I am lecturing you - but whenever K is being difficult and I want to just let her forget her diabetes (and stuff) I remind myself I'm her Mum - I can be her friend when she gets older. (we are friends most of the time though🙂)
Take care - and Happy Anniversary x

 

[Ellie Jones]

I mean no disrespect..

But ?Nagging? is nothing but bullying as it?s based in attempting to control another individual, the impact can destroy an individual? What it does is insinuates that person is incapable, it strips all self-esteem and empowerment the individual has within their environment and basic daily decisions?

There is no ?Power? to nagging unless you want to destroy another individual!
Tina husband has got it right when it comes to her son, he needs to be left alone and be allowed to get on with it? All the reminding of taking insulin, taking BG?s and what should or should be consumed and there he stands a Man but being treated like a 5 year old! Yes he?s 17 years old; he?s an inexperienced adult who should have full control over his life, within certain ground rules set by parents, peers and society!

I very much suspect that his fear of hypo?s is based in the ?loss? of control that comes with them, he can if his blood glucose remains high, maintain that all important control in his life, same with not taking blood glucose reading, no reminders of the lack of control he has! Similar with his outbursts and utter sheer rudeness towards Tina? He?s taking control in the only way he knows how with somebody who?s trying to control him! (sorry Tina I don?t mean to say you are, but this is how your son will see it)

I doubt that Tina?s son will overcome his denial until he?s hit rock bottom, all nagging will do is basically extend the period of time it takes him to hit rock it, but it will also drive him away from those who can help him back up when he hits it?

 

[Northerner]

I don't think Tina is nagging her son in the controlling sense at all, it's providing a sense of reality that he does have diabetes and it's not going to go away.

 

[Ellie Jones]

Alan

I know that, you know that and I would be the first to vote Tina has being a very good mum...

Sadly her son isn't ready to see it yet and may take another year or two to see it..

And there's nothing to tear a mother heart apart, than taking a step back so you actually leave a door open for when they are ready... More so when there's a medical condition exists that could have major impact on that child...

I'm happy to PM both Tina and meanmummy's my daughters story so that they can see where I'm coming from...

 

[MeanMom]

Thank you Ellie, and I do see your point.

I do tend to waffle on and not get my point over I used the term 'nagging' as it had already been used - what I personally mean by nagging is setting rules and sticking to them. I fully understand that Tina's son is an adult really but he is living under her roof and there has to be rules in any house.

The 'rule' in our house is that K does not get fed unless injects - yes she can access food without me giving it to her but if this happens and no insulin injected she has broken a rule and there are consequences. The adults in the house have to stick to rules too (including me) and if she were an adult it would still be the rule.

But I do get your point and I will discuss it with Ks councellor to see if she thinks I am harming her self esteem by my actions - self esteem is an issue with her.