anyone else have a child with diabetes?

Sagaris

Person_one wrote: »

Have you ever seen a young person blind and disabled and critically ill due to poor management of diabetes? It is NOT to be underestimated or dismissed as minor.

MY younger sister was diagnosed when she was 11, she has just died aged 49 of complications of diabetes - she never took it seriously as she grew up and just carried on her life as normal. Well, when I say normal, going down the pub/clubs with mates, ignoring her diabetes totally, not watching her food intake etc.. She moved house once and her blood glucose monitoring equipment was left in the loft for I don't know how long - she was totally in denial. She had an incredibly good hospital and medical team(s) looking after her in her latter years, otherwise she wouldn't have lasted as long as she did.

We tried thoughout her life to convince her of the harm she was doing but she wasn't bothered, you can't over emphasise enough to a newly diagnosed youngster how important it is to really take good care of themselves.

I wish the OP's son all the best (and the OP too!) - diabetes needn't be a hinderance if it's managed properly and taken seriously.

x-stitch

In almost 12 years my son has been hospitalised just once since diagnosis because of his diabetes - his insulin requirements dropped off dramatically as he hit 17 resulting in a couple of bad early morning hypo's: first time convulsions, 2nd full blown fit - wouldn't wish that on anyone. Second one we used the glaucagon pen on him - he turned out to be one of the few who reacts badly to that and couldn't stop throwing up!! Not an ideal response when all you want to do is get their blood sugars stabilised. Not that the hospital were much use - child portions (he was just about to move up to the adult clinic) for a hulking teenager and still suggesting way too much insulin.
And he doesn't consider himself disabled either.
My kid bro(from 12) and OH's niece(from 4) also have T1 and they've not been in hospital much - certainly not annually. The one who was diagnosed at 4 has a much worse attitude to her condition than the others.
So, there is life after diabetes!!

bulchy

x-stitch wrote: »

In almost 12 years my son has been hospitalised just once since diagnosis because of his diabetes - his insulin requirements dropped off dramatically as he hit 17 resulting in a couple of bad early morning hypo's: first time convulsions, 2nd full blown fit - wouldn't wish that on anyone. Second one we used the glaucagon pen on him - he turned out to be one of the few who reacts badly to that and couldn't stop throwing up!! Not an ideal response when all you want to do is get their blood sugars stabilised. Not that the hospital were much use - child portions (he was just about to move up to the adult clinic) for a hulking teenager and still suggesting way too much insulin.
And he doesn't consider himself disabled either.
My kid bro(from 12) and OH's niece(from 4) also have T1 and they've not been in hospital much - certainly not annually. The one who was diagnosed at 4 has a much worse attitude to her condition than the others.
So, there is life after diabetes!!

Hi x-stitch, i find it interesting you saying your sons insulin requirements dropped dramatically when he was 17. My son is almost 18, been diagnosed since 13, and has had quite a few hypos over the last few weeks and has missed some time off college because of it. Hes got an appointment with his consultant in a few weeks time and in the meantime we're keeping a diary of everything that happens. My son also thinks hes been having too much insulin, even though he hadnt changed the dosage at all.Personally i was wondering if he needed a different insulin because of his age. We're lucky that the hospital is really good, hes moved on to the adult clinic now and they equally as good as the childrens so fingers crossed we dont have the bad experience you've had. Hows your son now? My son definitely doesnt consider himself disabled either and copes brilliantly with it, hes been quite sensible considering in other aspects of life hes always been labled as the class clown, i'm really proud of him
Sue

x-stitch

bulchy wrote: »

Hi x-stitch, i find it interesting you saying your sons insulin requirements dropped dramatically when he was 17. My son is almost 18, been diagnosed since 13, and has had quite a few hypos over the last few weeks and has missed some time off college because of it. Hes got an appointment with his consultant in a few weeks time and in the meantime we're keeping a diary of everything that happens. My son also thinks hes been having too much insulin, even though he hadnt changed the dosage at all.Personally i was wondering if he needed a different insulin because of his age. We're lucky that the hospital is really good, hes moved on to the adult clinic now and they equally as good as the childrens so fingers crossed we dont have the bad experience you've had. Hows your son now? My son definitely doesnt consider himself disabled either and copes brilliantly with it, hes been quite sensible considering in other aspects of life hes always been labled as the class clown, i'm really proud of him
Sue

At the time he was injecting way more than my bro - an adult some 24 years older. Was a bit of a joke at the time!! I can't remember the exact dosages as it was a while back but I think he was on something like 10-12 units "fast" insulin and something similar for the "slow" overnight injection. Now it's probably only about a third of that. His control at that time was very tight and we think he'd lost some of his hypo awareness; also he'd been having high readings of a morning so probably having hypo's in his sleep. The severe incidents were both just as he got up.
I don't think he's changed insulins since then - if I were you I'd just get your son to adjust his dose gradually and see what happens. Clinics are good but infrequent and your son needs to have the confidence to take control for himself. Another thought - do these hypos coincide with any drinking he may be doing - that is my son's one blind spot; he will not acknowledge that alcohol will lower his blood sugars a few hours later.

He's fine these days as far as I know - he moved in with his girlfriend last year so I've had to 'let go' a bit!! Although I do keep a bottle of lucozade just in case. However, he survived 4 years at Uni without any serious incidents - that I know of anyway! And, to my knowledge, never had any bother injecting wherever he happened to be.

bulchy

Thanks for reply x-stitch. He has lowered his insulin by a few units to see if it makes a difference, so we'll see what happens. He's always been good at working out how many units of the fast acting insulin to use after tea or eating anything sweet, hes better than I think I would be if it was me having to work it out As for drinking, he doesnt really drink much to be honest, he got drunk a few months ago and didnt like being sick and the fact we were up all night looking after him so thats knocked that on the head. He has had a cold off and on since before christmas though, I dont think thats helped much. Its encouraging to hear other peoples experiences, and the fact your son survived uni, well i've got that to come soon, something else to worry about, but they cope because they have no choice do they?
Sue

x-stitch

bulchy wrote: »

Thanks for reply x-stitch. He has lowered his insulin by a few units to see if it makes a difference, so we'll see what happens. He's always been good at working out how many units of the fast acting insulin to use after tea or eating anything sweet, hes better than I think I would be if it was me having to work it out As for drinking, he doesnt really drink much to be honest, he got drunk a few months ago and didnt like being sick and the fact we were up all night looking after him so thats knocked that on the head. He has had a cold off and on since before christmas though, I dont think thats helped much. Its encouraging to hear other peoples experiences, and the fact your son survived uni, well i've got that to come soon, something else to worry about, but they cope because they have no choice do they?
Sue

I think, having seen both happen, in some ways, the older they are at diagnosis (up to a point) the better they cope because they are in control from day one. It didn't come easy (and he would almost certainly disagree!) but I tried not to take charge of his diabetes.* Have only ever injected him once - and that was because I had to before they would discharge him when first diagnosed. Our niece OTOH is now a similar age to your son but still gets babied by her mother; until recently Mum still did injections for her. Perhaps doesn't help that she is an only child. She has had far more issues through her teenage years though - missing injections, etc.

I don't think my son blood tests very much these days, but, nor does my brother - both feel they should 'know'. So far, so good!! The 4/day injection regime is far more controllable though - DS started on 2/day mixed insulin; bro on one/day.
(As a total aside - I still have one of my brother's original syringes and boy, does it look barbaric compared to the modern pens/needles.)

* Doesn't mean I didn't/don't nag though!!

koalamummy

hi I just wanted to let the OP know of my experience. I am an almost 36 year old female who was diagnosed with IDDM, aged 18 months. I made it all of the way through school and university doing all of the usual extra curricular activities like sport and debating society and goodness knows what else, as well as going on all of the trips, outings, and field trips, just like everybody else. No incidents ever occured....involving me anyway. Since graduating I have travelled extensively, again without incident. Have had a successful career where I have been both valued and highly respected by my colleagues. I have also done all of the normal things such as marrying the right man when I eventually found him, and having children. It has never held me back in any way or prevented me from doing anything that I have wanted. However I hold it responsible for my ability to organise and plan to a ridiculous degree within seconds! :rotfl:

I owe most of this to my mother who brought me up to believe that it was simply part of me same as my brown eyes and curly hair are. The curly hair was a favoured analogy with her actually....she reminded me that although my hair was a bit wild and curly I was in fact still in control of it, and with the right tools could make it look exactly how I wanted it to...if I could be bothered puting in the effort! Like with my hair I am in charge of my diabetes, and with a little bit of perserverence can make it run exactly the way I want it to Your daughters lifelong attitude to being diabetic will very much mirror yours.

patchwork_cat

Slightly off topic, but the future is looking much better these days with the trials of artifical pancreas http://www.guardian.co.uk/society/2011/apr/14/diabetics-artificial-pancreas-home-trial.

HariboJunkie

koalamummy wrote: »

I owe most of this to my mother who brought me up to believe that it was simply part of me same as my brown eyes and curly hair are. The curly hair was a favoured analogy with her actually....she reminded me that although my hair was a bit wild and curly I was in fact still in control of it, and with the right tools could make it look exactly how I wanted it to...if I could be bothered puting in the effort! Like with my hair I am in charge of my diabetes, and with a little bit of perserverence can make it run exactly the way I want it to Your daughters lifelong attitude to being diabetic will very much mirror yours.

:T:T:T:T:T:T:T:T Well said!!

Please don't fall into the trap of making your child feel too different OP. I have seen the damage that does to a diabetic teen.
I don't agree that a newly diagnosed teen diabetic should be labelled as disabled either. I can't see how a food budget should increase at all. certainly not enough to justify claiming £50 per week :huh:. Diabetics are advised to follow a healthy diet the same as the rest of the world. No need for special foods.

I think it's great that there is the option for counselling now on diagnosis. It is so very important that your child is not made to feel different or alientated from her peers. There is NO reason why acticities should be curtailed. I have seen the damage done to a child who was made to feel a burden for having the illness because his mother was so stressed about it all the time.

Yes, of course there are dangers and risks involved but I doubt very much that a child diagnosed today will have the same reduced lifespan as someone who was diagnosed 30 years ago and sensible control should avoid hospital trips. I don't know any diabetics who were hospitalised very much at all.

Good luck with it all. It's a steep learning curve.

Firefly

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.

You can give the right signals that diabetes needs taking seriously without being over protective and restrictive. My son was diagnosed at 13 1/2 and is now 18. He's a decathlete who is nationally ranked and has achieved International selection. He has an insulin pump and is a JDRF T1 ambassador. JDRF (juvenile diabetes research foundation) is another organistion that supports young people and identifies with positive role models.

Perhaps you could think of going to the Friends for Life conference that is held each year to meet other families. The down side of that is you can meet people for whom diabetes is a large and heavy millstone around their neck and wearing it becomes a life's work.

I am very surprised indeed that there is only one child in school witht he condition. My son was one of three in his tutor group and one of 11 in the school, he changed schools and is one of 9.

With lots of support and encouragement he has an insulin pump which gives him the freedom to do all the sport he wishes - he trains for around 25hrs a week and we certainly have increased costs for food, travel, glucose that would not happen if he didn't have such a diagnosis. He can't travel home from training without supervision as the risk of hypo is huge so I do quite a bit of driving and supporting him. Otherwise he's very independent with his care and certainly doesn't let it stop him doing anything.

I've struggled with some of the internet forums as they can be full of parents who have very different ideas about living with risk and can smother their children with care and attention. My aim has been to make my son as independent as possible.

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