Question for the parents out there or anyone diagnosed at a young age...

[Emzi]

Hi all sorry I havent been around for a while still fighting the endless battle and not really winning but thats for another thread

Im studying to be a counsellor and want to eventually work with newly diagnosed diabetic children/young adults.

I was wondering what counselloring (if any) was offer to your child and family or if you yourself was diagnosed young, were you and your family offered any. (what year of diagnosis)

Thanks all much appreciated and hope your all well 🙂

 

[MeganN]

Does 23 at diagnosis count as young adult? Lol

I was offered no help. Still struggling now

 

[AJLang]

Hi Emma I was diagnosed at 2 and I'm now 44. I was only offered counselling for the first time this October and that was because I was depressed because I no longer had my job.

 

[bev]

Hi Emma,

Alex (14) was 10 when he was diagnosed.Neither Alex nor us as a family were offered any help initially - just told to inject and get on with it basically. Then after about 5 five months Alex was struggling with anger issues surrounding the diagnosis and we were offered a chat with a phsychologist. BIG MISTAKE! This person made contact with me and basically told me over the phone that having a 'hypo' was all a state of mind and I didnt need to keep giving in to Alex (by giving him coke) or his behaviour would get worse!!!!!!!!!After I had got over the shock I rang back the next day and (explained calmly considering I wanted to scream at her!) that this was a medical condition which meant that if Alex didnt have coke or jelly babies his brain was being starved of glucose. After ten minutes of me explaining she finally apologised and sent us a letter to that effect. She had got mixed up with a 'hyperactive' child and confessed she knew nothing about diabetes!

So from our experience we were put off any help as unless the phsychologist has knowledge of the condition they are fairly useless. Now at our new team we have the option of a FULLY TRAINED IN TYPE 1 DIABETES phsychologist but dont have a need for it - but know its there if we do as they treat the whole family if needed and are brilliant.

Germany is the 'best' place to be diagnosed as a child with Type 1 - their data shows that due to their excellent care and inclusion of all the family members they have far less children with depression/anger issues/low self esteem issues and are generally the 'gold standard' in care for paediatric Type 1 diabetes.

If you can offer similar help that would be brilliant - the UK dont fair well with post-diagnosis care for children.🙂Bev

 

[delb t]

my son was dx aged 15- dec 2012.We were offered no councelling- although I think if I I/we had pushed for it we would have got it -our team are pretty good.I think it should be in place and as important as the dieticians role

 

[everydayupsanddowns]

I asked around about diagnosis ages a week or so ago and I really must get round to writing a blog post about it 😱

From the responses I got (upwards of 220) the average age of diagnosis for T1 was 18, which ranged from 0 to mid-sixties.

Something like 58% were diagnosed under the age of 18, so the majority - but not perhaps by as much as one might have expected.

 

[delb t]

yes I agree Bev it would have to be a specialist I remember 1 Transition nurse saying to us when adjusting ratios that H would have to get used to night time hypos-I had a total meltdown when I got home er no lets get a ratio that works !!

 

[Pumper_Sue]

Diagnosed at 4 1/2 (1965) Attitude in those days was grin and bear it.
Mother was also told I would be dead by the age of 20 🙄

 

[Monica]

Carol was diagnosed aged 10, just like Alex. She simply couldn't bring herself to inject for over a year. Our clinic had a trainee psychologist attached and Carol saw her for 6 sessions. After the 6 sessions, the psychologist told us that Carol could do with some more sessions, but unfortunately she was leaving and Carol wasn't entitled to any more sessions due to our PCT not paying for the new psychologist anymore. The other PCT for that clinic is still paying for their children to see one 😡 I'm seriously hoping that the new tariff thing will change this fact.

 

[Northerner]

Emma, I am way out of your age range (diagnosed aged 49 😱) but just wanted to say it is great to hear from you and wanted to wish you every success with your ambitions to be a counsellor 🙂

 

[Hanmillmum]

We saw psychologist attached to the team very briefy after dx, to introduce self, she said daughter too young at time (which she was) but any issues as she is growing we could access her support. Not even sure if she is still around, never been mentioned again.

 

[Twitchy]

Hiya, bit similar to pumper Sue, I was diagnosed in '78 at 11 months old & as mum was a nurse I think she was just expected to get on with it. I think my parents were probably given a similar prognosis (i know of someone diagnosed at a similar age but 4 yrs after me & their parents were told they'd not outlive mid 20s so it seems that was fairly common advice for very young diagnosed kids in the 60's to early 80's.) I know for certain my dad was told I wouldn't be able to have kids (they're both tucked up asleep in bed btw! 🙂 ). I've never been offered counselling for the diabetes, it's always been a kind of 'well it's here, get on with it' kind of approach I guess! There have been time when it might have been helpful, but it's never felt like there was too much point getting upset as it were - maybe a silver lining to an early diagnosis?

 

[MCH]

Hiya, bit similar to pumper Sue, I was diagnosed in '78 at 11 months old & as mum was a nurse I think she was just expected to get on with it. I think my parents were probably given a similar prognosis (i know of someone diagnosed at a similar age but 4 yrs after me & their parents were told they'd not outlive mid 20s so it seems that was fairly common advice for very young diagnosed kids in the 60's to early 80's.) I know for certain my dad was told I wouldn't be able to have kids (they're both tucked up asleep in bed btw! 🙂 ). I've never been offered counselling for the diabetes, it's always been a kind of 'well it's here, get on with it' kind of approach I guess! There have been time when it might have been helpful, but it's never felt like there was too much point getting upset as it were - maybe a silver lining to an early diagnosis?

Sounds similar to me. I was diagnosed in 1974 a week before I turned 9. I do not remember anyone offering counselling in those days. I don't know if my parents were told I wouldn't get past 20'ish as they didn't mention it (I will try to remember to ask my dad when I see him), though I do remember my mum saying that the dietician had said I could have ice- cream twice a year!

 

[bennyg70]

Diagnosed 1992, aged 8. I dont rememeber been offered any counciling, although Im always asked if i suffer any depression when I see the nurse. I usually just tell her that I didnt until shed finished with me.. 🙂

 

[Cate]

I was diagnosed in 1984, just after my 9th birthday. No access to any counselling. They did induce a hypo when I was in hospital though 🙄

We moved house when I was 14, nearly 15, and my consultant had still never actually spoken to me by that point (he spoke to my mum instead). No access to a DSN either.