anyone else have a child with diabetes?

Dazi

My stepdaughter is 17, was diagnosed at 10. Yes she went through all the 'why me' stage. It was hard at times but she has come through it with flying colours.

Re the food, it has never cos us any extra the weekends she is with us as she eats what we eat, just less of the crap stuff! As we said when the dietitian was telling us what she should eat, it's is really what we all should eat, made us stop eating so much sugary stuff. We quite often used to go out on a sat night for tea and she would have a pudding, but when we got home we would stick a party songs cd on and dance for an hour to work it off!

We have always told her there is nothing she cannot do, she has already passed her driving test and ferries her friends around. She is going to university next oops no its THIS year now.

She is now on an insulin pump, her, her diabetic team and her mum fought hard for her to get the funding for this and it has really made a difference to her life. I feel that all this has made her much more mature than her peers, I will give an example of this.

Last year we were on a camping holiday, she had been getting very low so for a treat we had donuts, went for a very long walk along the seashore, get back into car and she realises that her pump is not working, she rang her diabetic team, no answer, no panic from her at all, they ring back and give her the number to ring for the american manufacturers, she insisted on speaking to them herself, tried what they said, no pump didn't reset, its broken, they will send new one by special delivery to camp site, in mean time we have to get to A & E to get insulin, pens, needles etc. She took it all in her stride, even though A & E didn't seem to understand that when a diabetic says they NEED insulin it actually means they NEED it, quite prepared to wait for the prescription to be done later but need it NOW lol So 16 years old, no panic at all and she actually educated the nurses and drs in A & E re the insulin pump as none of them had ever seen one before.

She will be due back home later tonight, at her weekend job, she has been doing a weekend job since she was 14. so as I say, she is living a 'normal' life and is just like any other teenager (and don't we know it at times:eek:) we go through the 'normal' teenage stuff like drinking just that little bit too much :rotfl:

chewynut

I was 3 was I was diagnosed in 1993. I’m approaching 22 now. I received DLA when I was younger. It stopped when I reached 16 and a new claim was unsuccessful.

There is nothing a parent or doctor can say to magically make everything better, so please don’t beat yourself up. The rage is normal. I still get bouts when I fume about how crappy it can be to be Diabetic in a world obsessed with sugar. I don’t think the anger and the resentment will ever go away. You just get better at dealing with it and realise it’s nobody’s fault and no amount of resentment is going to magically make it go away.

Other people’s attitudes are single-handedly the worst part of being Diabetic. The ignorance can be astounding sometimes. I can remember going on primary school trips where in the evenings, all the other children got to play fun and games inside whilst I was made to go and run around the building outside in the dark until my blood sugars hit 5.00. All the other kids knew and laughed at me and it was embarrassing. Another time, I was 4.00 in the morning and the teaching assistant made me eat a Milky Way before I then ate my breakfast. And then I had to go and run around outside because I was as high as a kite!

I attended my first rock concert last year and it was awful. Despite going through every moment of the day beforehand with my friend so I’d know when to eat, his family decided to be spontaneous like normal people can be which completely screwed up my plan for the day. I ended up eating pasta on a narrow boat in the !!!!ing rain 2 hours before we were even supposed to start queuing up. It might’ve been fine for him but the thought of having a hypo on the front row of an Alice Cooper gig broke me out in a cold sweat.

Peer pressure is the worst part of being a Diabetic teenager. You may be lucky and have the perfect daughter but if she’s anything like me…well. I’m still here, let’s put it like that. My friends used to walk off and leave me if I went to do my injection so I stopped doing my injections, that kind of stupid thing that I didn’t care about at the time.

My mum handled it amazingly. She told me last year that the doctors had warned her what was going to happen. That teenagers rebel and hate you for it and there’s nothing you can really do but let them get on with it and learn for themselves that if you eat X, you’re going to feel like crap afterwards. And yes, by the time I got to 18 and especially when I got my first job, I finally realised that eating whatever you want really isn’t worth how crap it makes you feel. Except chocolate. Chocolate is worth everything!

It is easier to be a Diabetic these days because there is more general awareness of it, even if the newspapers make it hard by confusing type one and type 2 all the time. One of the very few plus points to being Diabetic is that you can get away with almost anything if you’re having a hypo, or if you mention that you’re type one Diabetic and people run away scared. I don’t feel guilty about that because there’s not much else going for it!

To go back to the original post, I’m afraid that there’s not much you can do. If your daughter is going to rebel, she’s going to rebel and all you can do is make sure she’s still alive when she comes to terms with it. Watch out for skipped injections because you lose weight more easily when you’re high (you pee the carbs out), and rather than avoiding sugary things entirely, allow things in moderation, or she might do what I did and get her friend to buy her sugary crap from the local shop.

If you haven’t already, talk to the hospital about a carbohydrate counting course. They are amazing things! You inject X units of insulin for X grams of carbs. It sounds so simple but the last time I went on the course, there was a 50 year old Diabetic who’d never heard of it. It’s a hassle when you start because you have to weigh everything, but stick at it for a few weeks and it soon becomes just another thing to deal with.

I want to say good luck to the OP. I know this sounds harsh, but yes, your daughter’s probably going to hate you at some points. Yep, she’ll scream and have the most magnificent hysterics you’ve ever seen if she’s anything like me (I used to snap my injections in half or throw them at the wall when I was younger). But don’t worry, she’ll get used to it and grow up at some point to realise that she’s got to make the best of what she’s got, and no crappy Diabetes is going to stop her from leading a normal life like everyone else.

HariboJunkie

Firefly wrote: »

Loud vote here for claiming DLA...after all a young person with diabetes will certainly require a higher level of supervision, albeit subtle and discreet.

I'm genuinely curious as to how that requires extra money?

Yes diabetes is a disability, but you can certainly live with a disability.

The diabetic in my family would be horrified to be described as disabled, not because there is anything worng with being disabled but they really wouldn't see themself as limited in their ability to do anything other than apply for certain jobs, and they are not competing in decathlons . I think it is wonderful what your son has achieved and you were clearly a supportive and sensible mum.:T

travelgran

To just encourage people concerned about life expectancy - as I said I was diagnosed age 15 (1961). I'm now 65. I have 2 chlldren. 3 grandchildren and have worked all my life. I went to university, worked abroad and still travel extensively.
Until the last 10 years (ie after 40 years) I've had no complications. Since then I've had laser treatment on my eyes and a vitreoctomy (Sp) on one eye. That was 4 years ago and my sight is now stable. Feet are fine.
And no - I don't live the 'perfect life'. DAFNE was a great course for me, although I resisted for a couple of years increasing my 'jabs' from 2 to 4 a day. Apart from initial diagnosis I've never been hospitalised for the diabetes. When I consider now that my control was based solely on urine tests (no home blood testing) and I fiddled some of those anyway - adding water to my clinic urine sample - and making up the chart the consultant required(!) I think I've done well and been pretty lucky. My driving licence has been renewed every 3 years since I was 18 - but no, I can't drive a PSV!
Good luck to all of you and all your children! Believe me - there are ups and downs along the way but life is good and very precious, enjoy it!

chewynut

travelgran wrote: »

I resisted for a couple of years increasing my 'jabs' from 2 to 4 a day. Apart from initial diagnosis I've never been hospitalised for the diabetes.

I have the biggest phobia of needles from when I was diagnosed and resembled a half-dead pincushion that the poor doctor kept sticking needles into because my veins had shrivelled up. For the best part of 10 years I resisted 4 injections a day and my big evening injection still makes me feel sick when I do it now, but changing up to 4 was the best thing I've ever done!

I've never been hospitalised either, or knowingly had Ketones.

koalamummy

hehe I feel like a rank amateur in comparison to you Travelgran! I really do not miss the days of urine testing, glass syringes, (in the days pre u100 insulin, they got boiled for 20 mins after each use for the more more modern here ), and pork and beef extract insulins! I still seriously wonder about their long term impact...moreso on my children But looking on the bright side, 100 years ago I would not have been alive to have time to care so in reality I am very lucky either way, as are my children

maire1

I've read this thread with interest! I'm a recently diagnosed t1 at the grand old age of 28! Its such a massive thing to come to terms with. I was hospitalised in DKA having had very few symptoms. Although in hindsight I was very thirsty and was losing weight but at the time I was on a diet so put it down to that!

I truly sympathise with young people who are diagnosed with this condition. Despite the fact that you can have a normal, healthy life, it's a lot to come to terms with. As an adult, I've had plenty of 'why me?' moments so can understand teens thinking exactly that.

You have to take the positives where you can find them. Nobody wants diabetes, but since I've got it, I have to accept it. I know I'll get free prescriptions, regular health checks, excellent antenatal care should I be lucky enough to fall pregnant and I now have a really good awareness of nutrition etc.

Life will go on for your dd. yes, there will be challenges, but there will also be opportunities. I wish her well and hope you will update on her progress!!!! X

Sam-Barr

Does anyone know if DAFNE program is available private? This could be life=changing for OH but doc says there is a 3 year waiting list. I'd rather pay and go private if I can

koalamummy

Sorry Sam I have never heard of it.

chewynut

Sam-Barr wrote: »

Does anyone know if DAFNE program is available private? This could be life=changing for OH but doc says there is a 3 year waiting list. I'd rather pay and go private if I can

I don't know if it's available private.

This may be daft but have you tried more than one hospital? I did the DAFNE course at Derby, but then did the Notts equivilent called KAREN a few years later. There can't be that much of a waiting list here because I told my consultant I wanted to do KAREN and got booked on the next course.

I'd also advise speaking to the diabetic nurses rather than your GP. When I went on the KAREN course, most Diabetics there found their GPs were completely useless. The diabetic nurse who ran the course said it was always best to contact them rather than the GPs.