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I'm a parent of a type 1 diabetic

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I'm a parent of a type 1 diabetic

Post  mumoftype1 on Wed Sep 03, 2008 10:56 am

My son was diagnosed 2 weeks before xmas last year he turned 10 this year. We have found it quite difficult as we have no one around us who is diabetic and we have educate ourselves and family and friends and its not that easy Sad . We do have a great support team and im thankful for them. I panic alot about him when he's at school he's the only diabetic there and getting the teachers to listen is very difficult i've found that people have their own assumptions about diabetes and wont listen that every diabetic is different!

We struggle when he's low, we give him something sugary then a carb to maintain but then it shoots up 25 plus! And sometimes he has no sign of being low he was 1.3 the other month and he only tested because he was having his dinner!

Im also frightened that our 2nd child will get it aswell again panic!

Any help or advice from other parents would be gold dust!
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Re: I'm a parent of a type 1 diabetic

Post  Clare on Wed Sep 03, 2008 11:26 am

Hello, I know very little about T1 - a couple of friends at school had it, but that was back in the dark ages Embarassed
I'm sure that you will be able to get help and advice here - it's a very new Forum, but growing by the day. (I'm spreading the word that it's here and I can be very loud when needs must Shocked )
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Re: I'm a parent of a type 1 diabetic

Post  mumoftype1 on Wed Sep 03, 2008 11:40 am

im very new to a forum!! found this on facebook its the only one i can find thats from the uk
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Re: I'm a parent of a type 1 diabetic

Post  Imogen on Wed Sep 03, 2008 11:56 am

Hi Mum... not a million miles away from me in Ashbourne... we drive past you when we go to Wales on holiday! A big WELCOME to the board. I really hope we can be of some help to you. I hope we can help you through the jungle that is diabetes. I am sure it must be very hard for you all to cope with someone who is growing and changing all the time as well as trying to control blood sugars must be VERY hard. I really do feel for you. However, I'd like this place to be a very supportive place where you can find out loads of info, but also that you can come and have a real moan, if you feel you want to.

I want to write loads, but I am on my lunch hour at the moment, so I'll take the time tonight and respond then, if that's OK. How does your son feel about it all? How good is his diet and exercise regime? I know that from what I have read it can be very hit and miss for a long time, until you get to the point where there is good control, so don't lose heart. We'll be here for you. Very Happy
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Re: I'm a parent of a type 1 diabetic

Post  mumoftype1 on Wed Sep 03, 2008 3:12 pm

Thanks means alot Very Happy He feels like he's the odd one out he has said it many times...he asks how many in the family have it also hes the only blonde haired in the family so he has nominated himself as the odd one out...how do you reply to that apart from lots of reassurance.He gets very angry aswell he hates doing his blood sugar testing and insulin in front of people especially at this age the last thing he wants to do is pull his trousers down in front of people!

His blood sugars are all over the place we can have very good periods then very bad ones, we found that granny smith apples shot his blood sugar up hi! can you beleive it blumming granny smiths his favourite apple(something else to get angry about)

His diet is really good he is a very healthy eater, but im having to read all the packaging on food just to make sure but he loves his fruit and veg he actually enjoys sprouts!! Shocked We get people telling us that different weight loss programmes are good for diabetics i feel like punching them this could be true but i want to be able to eat freely not stuck to a weight watchers diet!

He exercises well he plays golf 3-4 times a week,he is starting to take up badmington aswell and we walk lots weve just got back from camping where we went trekking up a mountain! So were an active family weather permitting Mad

Its a mine feild but the one thing that annoys me is the lack of knowledge people have on diabetes i just wish people knew more about it!
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Re: I'm a parent of a type 1 diabetic

Post  Clare on Wed Sep 03, 2008 3:37 pm

It's just as scary for adults. My husband was diagnosed about 4 years ago (T2), he still has problems with his meds, BS etc but we're getting there.
Show your son the forum - hopefully we'll have more younger members soon so he'll see that he's not alone and that he's not the only one to feel the way he does Smile
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Re: I'm a parent of a type 1 diabetic

Post  Rob65 on Wed Sep 03, 2008 5:28 pm

Hi mum. Very Happy

I've been diabetic since I was 13, about 30 years ago now. First of all, I'm still alive and well ! Smile

I can remember very well, the feeling of being different. I had a lot of resentment for having it. I didn't like talking about it much because I usually had to explain what it was and, as you say, dispel the myths. Not easy telling an adult that they're wrong.

One reason for the blood sugar shooting up so high, is possibly teh liver's response to low sugar. If you don't get sugar in through the mouth, the liver pumps out glucagon, which somehow stimulates glucose to be released into the blood. I forget the nitty-gritty but I have it written down somewhere.
If he wakes up with very high BS, it may mean he's had a hypo in the night and not even known. I used to wake up with a bitten tongue, because I sometimes convulse when I get below a certain level (not unusual) but that developed after a couple of years. It isn't inevitable.

I think it may still be true that diabetes often skips a generation or two, so you may find that he's inherited the 'lucky' genes from an ancestor, along with the blond hair ! Maybe a family tree would shed some light ?? And help him to feel more connected if he knows where he's inherited it all from.

And finally. Exercise is the best thing he can do. I'm fairly lazy, but yesterday I walked a couple of miles and my BS was fine all evening. It gives the muscles something to work at all day. Apparently, a good natural sugar for exercise is honey. I was told by a runner that it burns off slowly and keeps the energy levels up so presumably could act as a slow burning fuel while he's playign golf, etc.
Saves a lot of the high/low swings that can happen.

I hope some of this helps. When I was a teenager, I thought I'd be in a wheelchair before I was 40. I'm repointing the chimney this week, so there's no sign of that happening just yet Very Happy

Rob

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Re: I'm a parent of a type 1 diabetic

Post  Imogen on Wed Sep 03, 2008 5:32 pm

Your posts have made me think an awful lot (thanks, mate, it hurts!! Laughing ).

Have you tried doing a presentation in assembly at school so that all the teachers and pupils can learn more about diabetes? It may be nerve-wracking, but then you can teach them all at once? I am sure your local support team can help you - and then perhaps you could let them all have a hand-out about it.

I understand your son's feelings of anger (why me? why can't I eat that? etc) I feel like that too - and want to rebel as well. However, we are all stuck with only one person (guaranteed) throughout our lives and that is ourselves. It's a huge responsibility for him, but at least it is managable, albeit a little difficult.

He can be as private as he likes about injecting, can't he? He can just excuse himself to the loo and do it there?

Weight loss? Is he overweight - by the amount of exercise he has, I cannot see that. He can, I am told, eat what he likes - treat himself occasionally (even if just to half a granny smith!!!!). He almost needs to view other's ignorance about diabetes as a challenge to teach them, not a thing to make him angry. Although, I am guessing he's had diabetes up to his eye-balls and just wants to live without having to explain everything!?

Does he have school dinners or a pack-up? Does he take snacks etc? Things may get tricky on school trips, etc. Perhaps he has a favourite teacher he could ask to watch him?

How many types of insulin has he tried? Sometimes one type suits better than others.

Are you members of Diabetes UK which I have found very helpful?

Loads more things but my boy needs a bath now (once Sponge Bob Square Pants has finished!!!!)

Keep strong. Smile
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Re: I'm a parent of a type 1 diabetic

Post  mumoftype1 on Wed Sep 03, 2008 6:00 pm

Thanks Rob for that with regards to the family tree very very difficult my dad tried a few years back too cut a long story very short my tree stops after my grandparents!

Its good to know that you well after having diabetes for so long and fills me with a little confidence maybe a good thing that it came out now so he learns with it now and it becomes normal if it ever can be.
Never knew about the honey we'll give it a go if it ever stops raining!

He's not overweight he takes after his dad tall and thin at least he dosent take after me Razz

He has tried novomix and he is now on humalog our nurse has said that we will leave it for a few months and review it seems better than the novomix not as many lows but still too many!!

We joined Diabetes uk and i collect money for them in a box at work also gives me a chance to make people aware of diabetes a bit more i pile them with info!!

I quite like the look of the holidays that they do for children with diabetes looks a really good time and plus they are all diabetic!

We are going to a empowerment evening next week that will have dietician's and other speakers run by our nurses hopefully more things like this come up im taking half the family so we can all learn!!

As for school its a good idea but im not confident enough to do it the children in Sam's class have all learnt about it and the teachers get regualr contact from our nurse still dont think they get it but at least they know about it more now cyclops
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Re: I'm a parent of a type 1 diabetic

Post  Imogen on Sat Sep 06, 2008 9:41 pm

What kind of holidays are they?

Let us know about the "empowerment" meeting and how it goes.

I guess - re: school - that unless it directly affects people, they won't have that passion to learn everything there is to know. Just keep nagging them!!!! Laughing
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It will get easier!

Post  xclairex on Sun Sep 07, 2008 5:24 pm

Hi I was diagnosed with type one diabetes in 1997 when I was 11yrs. My mum had a really hard time with it. At the time we knew no one with diabetes and I was the first child at my school with it. School was horrible for me taking blood tests, eating and taking insulin in front of people, them not having a clue and i ended up getting bullied for it. I was left in a first aid room by myself to sort out a hypo. It ended in me not going to school and driving my mum even more nuts. I was very angry with every thing oftern taking it out on my mum which I shouldn't have done. My mum now describes it as one of the hardest times in her life saying she was always watching the clock to take blood tests, give me snack etc.
I still struggle now accepting I have it but it is alot easier now then it was when i was first diagnosed now i can eat what i want when i want Very Happy . My mum did a great job with mine and I will always be thankful which I bet thats what your son will say as well later. I know its hard but when your son is older he will do all the things without even thinking anyone is looking at him. I take my Insulin in public now something I would of neever done!
Good luck for the future x Smile
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Re: I'm a parent of a type 1 diabetic

Post  Imogen on Sun Sep 07, 2008 5:34 pm

Thanks Claire and welcome to the forum Very Happy
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Re: I'm a parent of a type 1 diabetic

Post  DemonFairie on Mon Oct 27, 2008 9:16 pm

Hi ive had T1 for 20years my mum found it almost impossiable to get any information on it. i never found it a problem at school but that was because 1. i got it so young i couldnt remember anything different and 2.i was on the old 2 injections a day so i didnt need to inject at school, but thats very rutine and regulated. it must be very hard for both of you but i think once you get over the starting out stage he'll be fine and settle down in to it. also if you have the support of people on here that will be a great help! Very Happy have you heard of the DAFNE course? i went on it in January and found it a great help! bananas are a good slow reasing food for exercise

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Re: I'm a parent of a type 1 diabetic

Post  Nick on Mon Oct 27, 2008 10:57 pm

DemonFairie wrote:Hi ive had T1 for 20years my mum found it almost impossiable to get any information on it. i never found it a problem at school but that was because 1. i got it so young i couldnt remember anything different and 2.i was on the old 2 injections a day so i didnt need to inject at school, but thats very rutine and regulated. it must be very hard for both of you but i think once you get over the starting out stage he'll be fine and settle down in to it. also if you have the support of people on here that will be a great help! Very Happy have you heard of the DAFNE course? i went on it in January and found it a great help! bananas are a good slow reasing food for exercise

Just a quick chip in on this one....greenish or hard bananas are low/medium GI but ripe>over ripe are high GI and will absorb very quickly into the blood.

Nick

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willing to help

Post  roxxy on Fri Jan 13, 2012 5:39 pm

I am 19 and have had type 1 for 17 years now . I have had my fair share of difficultties related to diabetes growing up. My school wouldnt listen either . I am more then willing to give you any advice i can if you like .Just ask and ill do my best to answer . I wish your son the best of luck manageing his Diabetes .

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