anyone else have a child with diabetes?

gabycat

My 13yr old DD was diagnosed in Oct last year and is feeling very resentfully, I know things will settle down, but wondered if any other parents had any advice or stories.

Its type 1 my DD has which means her panceras does not produce insulin.

travelgran

If you haven't already I suggest you look at the information and advice from Diabetes UK. I've just Googled "Diabetes UK teenage diagnosis" and see there is support for both parents and young people. I know there are residential holiday sessions around the country for both teenagers with or without their parents. These aren't cheap but may be worth the investment. I think they would reassure her that OK, it's not what any of us would choose - but the world is still out there waiting. She would meet other youngsters in the same situation - same problems with a variety of solutions.
I don't have a diabetic child but I was diagnosed myself at 15, a very long time ago!

gabycat

Thanks, we have both been on the website, it is really good,the diabetes clinic we go to is wonderful, think she is needing to meet with other teenagers with diabetes, She is the only one in a school of over 1500 pupils, she hates being seen as different.

x-stitch

I would recommend the family weekends if they still hold them. My son was diagnosed at 13 - he's almost 25 now.

mazza111

Would also recommend meeting other kids who are the same. My 2 nephews were diagnosed at age 3 and 16. The 3 year old grew up like that, and although still had the resentment, it was much worse for the 16 year old. But easier in another way, that he'd seen his brother grow up with it and knew it was manageable. Good luck with it all, teenagers are never easy, especially when they have a life long condition to manage

ognum

Diabetes UK have some great holidays for teenagers. Mybdaughter has volunteered for them as medical cover and the kids have a ball while being kept safe.

Google Diabetes UK. Hope this helps.

Kaz2904

There was a thread along similar lines last year but it may have been on the oldstyle board. Pigpen's son was newly diagnosed along with some others. I'll see if I can find a link.....


ETA: This thread may be the one I was thinking of? https://forums.moneysavingexpert.com/discussion/3538657

pigpen

Hey hun..

I was going to reply later, but decided if i didnt do it now I would forget!

Mine is 13 in March and was dx last September.. conveniently when the baby was 11 days old!

We have good days and bad and in a lot of ways it is harder for them to adapt at this age than it is when they are dx as toddlers and grow up with it being normal.. though that in no way says having a toddler with t1 is easy by any stretch, just different issues.

There is a fabulous supportive facebook group for parents of T1 children.. seriously have a look.. there are also a couple of good active fb groups for teens as well where she might feel more able to get her probems down and realise it isnt just her feeling that way.

Is there a psychologist linked to your diabetes team? If you ring the DSN (diabetic specialist nurse) they should be able to put you in touch or arrange a chat for one or both of you

my son tends to just get on with it and have violent outbursts and vent his frustration and anger screamng about how unfair it is he has to stab himself a million times a day, the way he puts it you would think he had to do injections with a spoon!

We are pretty used to dealing with medical issues and injections as I also have 2 on growth hormone replacement.. but I think it is all part of greiving for what they had and what their friends have and they just dont want to be different at that age, it is all very hard. Everything has to be planned and accounted for, they cant just scoff a bag of swees or piece of cake without logging it all..

If you need an ear please just PM me. I am usually about.. or on the parents FB group above!

hugs to you both.. it is a lifelong steep learning curve

And have you applied for DLA for her to cover extra food/transport costs for appts etc? if not.. you should.. most get middle rate care which is about £50 a week.. just about covers costs .. it might soften the blow if she has a little cash in her pocket

wowbands do some adolescent acceptable ID medicalert bracelets/dogtags she might like too.. (I should be on commission!)

travelgran

I'd not heard of DLA for diabetics (before my time!) so I've just had a look at the website information. Personally I'd be very careful about the message it gives children and young people when given a disabled label. Does she really need continual supervision throughout the day? Hard to reconcile this with the need to encourage her to manage her diabetes and grow into leading an independent life. I do realise some people with diabetes have a more fragile control and some families need more support - especially at the beginning.
I suppose where I'm coming from is influenced by 2 things. At 18, leaving school it was suggested I register as disabled as employers who needed to take on a proportion of disabled people would prefer me to a person with mobility problems for example. I didn't. The second is that although I never keep my diabetes secret, job application forms now ask 'Do you consider yourself disabled?' The answer is 'No'.

gabycat

Thanks pig pen have asked to join facebook group, had no idea about DLA, will need to look into that.

Understand what you are saying travel gran, am just trying to do my best for her, and what she thinks is right for herself, it 's a fine balancing act on the mo

mrsBagpuss

diabetes is NOT a disability, yes I agree it can be inconvenient but by monitoring food and blood sugar levels it just becomes normal, and shouldn't stop you from doing anything.

look at "insulin Junkie for life" on facebook