Just heard my 8 yr old niece has type 1 diabetes. How can I help?

[Spink]

She lives abroad so I can't be around to be properly useful, but I wondered about may be sending her something..

She is in hospital and will be for at least 2 weeks while they work out the right insulin regime and teach her & my bro how to manage it. I will send a get well soon card and was thinking of maybe a book for children with diabetes, or something she might find useful in everyday management... or maybe a pretty notebook or something in case she wants to write down how she is feeling?

English is her second language so if there are any books anyone could recommend she would need one that has relatively simple vocab, though my brother would help her with it.

Any help much appreciated!

bump!

Not sure i can be much help from a parents point of view but i do have type 1 diabetes, was diagnosed at a similar age to your niece!

All i can say is that it's really not as bad as i thought it would be when i first got diagnosed. You do get used to it and i haven't missed out on anything because of it!

When i read things on here written by parents of kids who have diabetes it is an eye opener because i had no idea how stressful it must have been for my mum! Far worse for her than it was for me by the sounds!

I'm surprised they're keeping her in for so long, unless she was extremely poorly at diagnosis! What country is she in?

it's good to hear that it hasn't got in the way of life too much for you! I guess that is one of the worries - that she will miss out and find life harder now. Can you think of anything that helped you at the time of diagnosis?

I've been told the 2 week thing is pretty standard in childrens hospitals in Poland, which is where she is. Her bg was apparently very low when she was admitted and her sugars have been very up and down since. Once they've got her stabilised she will be using a pump which sounds like good news? If that's what happens I was thinking of getting her a pretty pump belt, I'm not sure if that would be a good idea. I also saw some jellybelly beans which were marketed as an alternative to glucose tablets and think she might like.

It's normal for her BG to be unstable at first...that's pretty impressive that she's getting a pump so quickly...i'm not on an insuling pump, just multiple daily injections...both the pump and MDI give you a good deal of freedom to eat pretty much what and when you want!

I think what help me was talking to other people who had diabetes and knew what i was going through...and also support from family and friends :)

The jelly beans sound like a great idea, as does the pump belt...it used to be a 2 week stay when i was diagnosed but i think it's much shorter nowadays..it's a lot more common these days than it was when i got diagnosed in the mid 1980s!

Thanks paddy, it's a relief to know it's normal for her bg readings to be all over the shop, I was worried it meant bad things.

Glad to hear you think the ideas of stuff to send her sound ok, I'll send it via my bro so he can vet it first. Hopefully my parents will see her today and let me know how she's getting on - one thing for certain is that she'll have plenty of family support! Let's hope she wants it...

Pumps are fab :o I've had one for the last 8 years, I was diagnosed at 9.

4 x jelly babies = 15g carbohydrate (enough to treat a hypo). Or, the mini packs of jelly babies have about 15g carbs in too.

There's an online course for learning about carb counting, which you need for pumping effectively, here.

There's a UK-based children with diabetes mailing list that your bro might like to join, it's v busy but v supportive. Or the forums at diabetessupport.co.uk are good too.

Pumps are amazing, my son is about to have his second one (with sensors,!!) (he was diagnosed five years ago).

Children with diabetes uk www.childrenwithdiabetesuk.org/ is a source of unending support and I don't know how I'd have got on without them. If your bro joins this, suggest that he joins from a separate googlemail account as its a very busy list.

My son was 7 when he was diagnosed. He's 12 now and doing well.

... There's some useful info on the site about pumps. Please don't worry tht they are not uk based, parents want to support each other x

pump pouches

[[http://www.pomp.org.uk/collections/party-collection lovely girly pump pouches
]]

book for your bro (really easy read but also very very informative)

book for you!

one for your dn (you can get this as an iphone app too)

It is fab that she is getting a pump straight away. Ds2 (4) has just started using one, it's great.

I know you said about sending her a pretty pump pouch - but can I suggest that you send her a present thats totally unrelated to diabetes, something to distract her?

Thanks everyone! I thought this thread had gone cold so it was great to log on and see your responses I have bought one of those pump pouches!

I wanted to ask what you think - we were due to go on holiday with dn and my bro and a big family crowd, at the end of aug for 2 weeks. Db is worried about getting his head around coping with it all & I wondered if there is anything I can do that would help? Would you say it is too early after diagnosis to travel?

We went to the canaries 3 months after dx and were on injections. W needed the hol. Please get your brother to network with other d parents, who will be able to give so much support whatever regime she's on. They'll need to thinks bout logistics of taking spares of everything as well as travel insurance.

We got our new pump today, second one, upgraded and fab. So exciting.

Hope things are going ok. It's such a shock at first.

Are they learning about carb counting? It unlocked so much of the mystery for us.

... Spink, I'm pretty sure you could Join the mailing list or the forum so that you can learn too. There's nothing better for support than a really clued up friend or relative.

Ok, I will see if I can join.

They've had some teaching on carb counting from the hospital but are feeling flummoxed by it and I think are worried they won't be confident at it all by the hols. I'll suggest forums tho think db is overwhelmed at the mo- while she's an inpatient they do parent training that sounds v intense.

Get them to join children with diabetes via that link (you too!), but get them to open a separate gmail account to cope with the volume of mail. X

If they/you do an introductory email saying who you are and what you need help with, people will pile in with their own experience.

Don't worry, it does seem overwhelming at first, but becomes second nature and something that isnt always at the forefront of your lives.

My nephew has t1. I would say learn as much as you can about what it's like living with diabetes. My sister tells me it helps that we are trying to understand what it's like for them. They've had some very tough times since his diagnosis. Every day is different with diabetes and it's not easy. Be an ear and a shoulder!

Tom & bubbles, thank you. I am trying to learn, oddly diabetes is something I thought I knew stuff about as I work with adults with long term health conditions. It is a different kettle of fish getting your head around the seemingly hugely complex everyday tasks of diabetes for someone close to you.
Thanks again, I really want my bro not to feel he & dn are are the only ones who will know what to do, & that he can share the load.

Ds2 was diagnosed four months ago and I don't think I'd cope too well with going on holiday. Although if it was a big thing that he was looking forward to, I'd force myself! A day out at the beach feels like enough of an expedition at the moment.

Have they got the 'Carbs and Cals' book? You can get it on Iphone too.

My son was dx'd in november and we had booked and paid for a trip to the canaries in feb. it turned out to be the holiday we needed - wed planned ahead to take account of the extra logistics!

My daughter has t1, she was diagnosed nearly 7 years ago when she was 4. I think the most difficult thing, after coming to terms with the diagnosis, is the daily management of it all and feeling that you have it under control. There is nothing more disheartening and worrying when those blood glucose readings aren't in target range.

The most useful thing for me has been knowledge. I have spent a large amount of my time learning and reading so that I can have a good understanding and with that understanding has come much improved control to my daughter's diabetes. A very useful book to me has been Type 1 Diabetes in Children, Adolescents and Young Adults. If someone close to me was diagnosed that would be top of my list of what to buy for them (for the parent).

My daughter also has a pump and she uses the pump belts made by Tallygear. I'm not sure if someone in the UK makes something similar but they are very good, she has several colours and patterns. We ordered from the US and they shipped over here to the UK without any problems. Medical alert jewellery is another important thing but at a young age it's probably not as necessary as an older child like my daughter who is more independent and out without me sometimes. We order from icegems who have a lovely range of pretty jewellery.

I just wanted to add there is a UK company who do pump pouches called funky pumpers. I can't link because I'm on my phone but if you google you should find it!

Hope your niece gets out of hospital soon.

Second everything people have suggested. Email discussion list of CWD - children with diabetes is a great support . Lots of people on there who truly 'get it' . Can be busy but there is always someone around who can help with queries or just for having a good moan!
They will be in a state of shock I guess at the moment & it will take a little while to take on board all that is involved & just how relentless it can be at times. Great that they are getting a pump fom the start & hopefully they will be fully prepared with a 2 week stay in hospital altho' think I would be really stir crazy after 2 weeks - we were in for 3 days after diagnosis & that was long enough!
Carbs & cals app on iphone is really useful for carb counting ( or the book)
Recommend Ragnar Hanas book on Type 1 Diabetes in Children & Adolescents , as well as Think Like A Pancreas.
Also recommend Funky Pumpers for lovely pump belts. Unfortunately my son only has black spibelts which are great but nowhere near as nice as the girly ones!
At diagnosis in UK JDRF charity supply a kids sac which has info & also a lovely Rufus bear. You could maybe see if they would send you a pack to forward on to your niece.
Also great that you are trying to help & understand as that can often be the hardest thing. Hope things are going well with it all.

(sidebar to wave at the Cwd massive and smile and the support we give to each other and to newly dx'd families x)

If anyone would like a copy of the ragnar Hanas book pm me...for some reason I have 2!

Sorry for the hijack :-)