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Dn just diagnosed with diabetes

262 replies

supermama212 · 29/11/2011 17:22

niece (12) just diagnosed with diabetes. In hospital :( they are teaching her how to use insulin. she went to A&E after her throat was burning - she drank orange cordial- what could cause this? Blood test confirmed. im in york she is as well - at the same hospital my DD just home from!! Has anyone been/ is in this position? thank you - its just so Confused

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supermama212 · 29/11/2011 17:59

Bump

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paddyclamp · 30/11/2011 15:26

I was diagnosed with type 1 diabetes when i was in primary school and am in my 30s now......as far as i know nobody knows the cause, it's just one of those things....some people say there is a genetic link but in my case there was no family history!

When i was diagnosed i'd been very thirsty, tired and lost loads of weight...the GP missed the diabetes at first and i ended up in a very bad way in A&E

I am fine now tho, no serious complications (just some minor eye issues) and have survived uni, childbirth etc.....I pretty much eat and drink what i want, just need to make sure i take my insulin and do lots of blood tests

She will be fine long term, might take a bit of getting used to, but she'll get through it!

supermama212 · 02/12/2011 06:26

paddy in my & dsis side of family no history. i am not to sure about bil though, she is off school till wednesday then i think she is doing 1/2 days for remainder of week. She is annoyed as she has to watch everyone else eat advent calender chocolate and as yet no other option!!!!!!

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Tidypidy · 02/12/2011 15:58

my son was diagnosed nearly two years ago at the age of 13 months and it is a terrible shock at first but soon becomes 'normal'. As with paddyclamp 2 gps missed the diagnosis and ds ended up in PICU for 2 days then ward for 2 weeks where he managed to come out in chicken pox and cut his first tooth! It was certainly a baptism of fire!
We have told that his diabetes may have been triggered by a virus which mutated to attack the pancreas as there was a cluster of children diagnosed in a small area within six months. This is just a theory though and we soon realised that trying to work out why it had happened wasn't going to change the situation so it was best to move on from that and live with the day to day requirements instead. There is no history of Type 1 in our family either.
My son has an insulin pump which suits him perfectly as the doses are tiny and can be tailored to meet his requirements more exactly, perhaps your niece might benefit from a pump?
For useful advice and links try the JDRF website as they research type 1 diabetes in children and young people, Diabetes UK has more general advice and there's also the children with diabetes website.
I hope things settle down quickly for her.

paddyclamp · 02/12/2011 16:33

Supermama...her diet won't always be this restricted....once things settle down they will put her onto multiple daily injections whereby you alter your insulin according to the amount of carbs you eat.

Tidypidy..the virus theory has been kicking around for a bit, and i def had tonsilitis shortly before i was diagnosed so there may well be something in it!

hungryallthetime · 02/12/2011 17:50

My son (10) was diagnosed this year. It's quite a big life changer and I know from looking around the Internet that it can get quite obsessive for parents but I'm just trying to keep life quite normal and go with the flow! He's on 4 daily injections a day and we count carbs in food to work out how much insulin he needs to have. This means you can eat as per-diabetes (mostly). My son has taken to it fine, does own blood tests no injections - unfortunately it soons becomes normal.

supermama212 · 03/12/2011 07:15

she is still in hospital :(
Sis & Bil are just coming to grips with it. DN is being so good - she is doing the insulin 4 times a day and will hopefully be back at school wednesday.
thank you! Xmas Smile

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paddyclamp · 03/12/2011 11:03

if she's taking it 4 times a day then she will already be on a really flexible regime...once she gets the hang of carb counting she can more or less eat what she wants

supermama212 · 03/12/2011 14:47

paddy you are a source of knowledge! she is staying till monday i think so they can teach her how to carb count!
bil is wanting her home and is refusing to think anything is wrong. stupid bilcan he not grasp that his dd has a lifechanging illness?

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paddyclamp · 03/12/2011 15:21

It's very scary at first, especially the hypos - luckily i was too young to really be scared! I know my mum was traumatized by the whole thing but she never let on to me, and cos she took it in her stride and never made an issue of it, it never felt like a big deal. I think if i'd seen her weeping and wailing it would have made it a lot worse.

Maybe he's putting up a front? Does DN have any siblings?

SpottyTeacakes · 03/12/2011 15:42

I was diagnosed at 12, treatment is amazing in comparison to 20 years ago. AFAIK Type 1 diabetes is an autoimmune disease which is hereditary but can show itself in different forms ie my mum is also diabetic, my sister has lupus and and my other sister has had problems with her kidneys all due to autoimmune.

It will soon become a way of life for her and all it means really is she needs to lead a healthy lifestyle, just like anyone else! Carb counting is the way forward so it's good that they are teaching her that. I had a wobble in my teenage years but that is probably to be expected. She is lucky to have such a caring Auntie too.

Hi paddy :)

paddyclamp · 03/12/2011 16:33

Hi Spotty :)

I agree things are so much easier now...when i was diagnosed food labelling wasn't as good so carb counting was much harder..and the finger pricking devices were like harpoons!

supermama212 · 04/12/2011 06:49

she has no siblings. Bil is always an arrogant idiot Bil is always very self centered though.

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supermama212 · 04/12/2011 08:37

i am in hospital now with a kidney infection - left it too long so am on a drip:( will post from phone

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paddyclamp · 04/12/2011 10:06

Sorry to hear that Supermama! Isn't it you whose DD has appendicitis recently too?! You're family doesn't seem to be having much luck at the minute :/

supermama212 · 04/12/2011 10:39

yes! no its strange paddy, isnt it? its my fault if only i had got to the dr earlier! i wouldnt be in this mess

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paddyclamp · 05/12/2011 13:03

how are you all now?

supermama212 · 05/12/2011 15:26

i am home tomorrow , DN home and back at school on wednesday and DD off for another week till DR give her the go ahead to go back to school i am sending her back on monday DR says so our not!

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miSaltireandwine · 05/12/2011 15:35

I know many people with diabetes probalby don't think this, but it isn't life threatning - by that I mean it's not terminal like cancer, you don't get told you're diabetic you've got xx years- life changing, yes, but properly managed then it isn't terminal.
my cousin got diagnised when she was 2. She's now 19 and has been away to Cambodia for 2 months working for a charity, she's been to peru for 6 months, and has never ever let her diabetes stop her doing anything. her dad also has it and he's the same we won't mention my brother.

Medical science has come a long way, my dad was diagnosed in 1949, when he was 7. He died in 1987, but even since then the changes in treatment and the freedom these changes allow are massive. My dad used to have injection with syringes, not like the thigns they use now, he had to take blood test swith what seemed to me as a child as a spear!
It seems to be a bit of a genetic thing in our family. my dad had it, my DB (one of them) has it, 3 cousins have it too. All got it between the ages of 2 and 10, and all had a virus or illness beforehand. I believe that the "gene" for it is hereidtary, but that something triggers it off, such as an illness or virus

supermama212 · 05/12/2011 15:56

i think miSaltireandwine that she thinks it is life changing - her school have form time ( registration) at lunchtime. its staggered but her form are second for lunch and she has to eat in form/ lessons until it can be managed differently. Also, DR recommended insulin pump anyone got any advice/ experience of these?

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OxyMoron · 05/12/2011 15:59

Your poor niece, what a shock. My dd is 3 and has had type one since she was a baby. It might be worth pointing your sis in the direction of the UK children with diabetes support lists: www.childrenwithdiabetesuk.org/
You will all get used to this 'new normal'.

OxyMoron · 05/12/2011 16:04

X-posted. Dd has been on insulin pump since her 1st birthday. I would higkly recommend it. You can be so flexible with the insulin doses. Diabetes fits around life rather than life fitting around diabetes. If your dn is ok with wearing a pump (attached 24/7 apart from baths, etc) then go for it. She will also be eligible for DLA.

Hth

supermama212 · 05/12/2011 16:15

thank u oxymoron how do they fit the pump? if she wants one sis phones hospital in am and they go from there

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OxyMoron · 05/12/2011 16:28

They will need to sort funding from pct and order the pump from the company (google animas, medtronic and accu-chek to see the kind of pumps available) so I would guess she won't get it immediately, so expect a few weeks at least on injections and then pump training once it's ready.
The pump is attached to the body via a cannula, just like a little needle with a sticky patch to keep it attached to the skin. The cannula is usually sited in a thigh, top of buttock or stomach and the cannula needs changing every 2-3 days. Thin tubing attaches the cannula to the pump. something like this.

Brambleschooks · 05/12/2011 16:39

I'm sorry to hear about the diagnosis. My son is 11 and was diagnosed aged 7. It was such a shock, but we had good support, particularly on the mailing lists for children with diabetes (open a separate googlemail account or you'll get swamped!). There is no type one in our families either, but there's coeliac disease and hyperthyroidism, which are linked.

Our lives changed so much when we went from injecting onto a pump. We were helped to sort out carb counting (those wonderful 'children with diabetes' mums and dads again! - great support and friends for me and my children). Managing the pump is much easier to manage injections after the initial sorting out, and much better for independence and health comes longer term.

Stay well yourself and all the best.

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