My daughter got diagnosed yesterday and to say that the last 24 hours was been a bit of a learning curve would be an understatement!

Anyone else got kids with it? Any tips or things to watch out for?

I got type 1 when I was 10 (1970) but there is plenty of information available to you. If it was my child I would go through proper channels esp diabetic specialist’s who have the very latest info available to them and they will have advised a lot of anxious parents.
The modern treatments are fantastic and after initial worries your daughter and you will learn fast as to whats best.
PS, expert advice imo is a must at this stage. Wishing your girl and you good luck.

sorry to hear that harry.
best of luck to you and the wee un.

A good friend has a son who is type 1. He is the sort of down to earth father everyone wishes they could be and he’s a super kid (now 13). I’m sure if you gave me your contact details he would be happy to talk to you about their experiences. Email in profile.

We’ve been lined up for all sorts of seminars and clinics in the next couple of weeks. Nurses are also going to visit nursery and grandparents to train them on carb counting, bloods and jabs.

It is all a bit surreal at the moment.

The ony one who isn’t fazed is my daughter!

Chin up, it’s all controllable and all good

Steve Redgrave is diabetic, I don’t get the impression it’s held him back 🙂

bless, kids are pretty tough! she prob won’t even blink!

Am so sorry to read this. My stepson was diagnosed in March last year. I know that my missus is in the process of replying but if I can be of any assistance or even if you just to vent then please let me know.

There’s a lot to learn and it may seem daunting, but you’ll get it cracked I promise. I recommend a book by Dr Rangar Hanas, called Type 1 Diabetes in Children, Adolescents and Young Adults. It’s been worth it’s weight in gold.

Hi,

I’m so sorry to hear you’ve joined this horrible club. My son was diagnosed in March 2010 when he was 12. The very best advice I can give is get yourself signed up to the Children With Diabetes email list http://lists.childrenwithdiabetes.com/cgi-bin/mailman/listinfo/uk
On there you’ll find other parents (me included!) and a wealth of information and when I say a ‘wealth’, I’m not kidding – some of the parents on there are currently advising the NHS and the government on best practice for children with Type 1.

Okay, so that’s the first thing. The next thing is get the Ragnar Hanas book and remember that AT ALL TIMES THIS IS YOUR CHILD and you will very, very quickly become an expert on Type 1 in your child. Your team should work with you to help you become that expert – if they don’t then don’t forget that Patient Choice means you can choose which hospital you receive your diabetes care from. Where abouts in the UK are you? The very best diabetes care for children can be found at Leeds hospital (under Dr Fiona Campbell) and at UCLH (under Professor Peter Hindmarsh).

I would also say that if you’re prepared to put in the work then an insulin pump is the way to go – they ensure the very best current and future health for your child according to all the research. That said, some children do brilliantly on multiple daily injections (MDI) which is two different types of insulin (generally Levemir or Lantus and Novorapid) and some even do well with the old fashioned two injections a day of mixed insulin. The only one which doesn’t involve injections is the pump and that’s a selling point for some!

School will also be something that your Diabetes Specialist Nurse (DSN) will help you with to make a care plan so that things like PE lessons and general everyday management of blood sugars can be handled.

The most important thing to remember is that right now and for some time you’ll all be in shock and then there’ll be some grieving. I think all parents of children with diabetes have a good cry regularly in the first few years at least. However, there has never been a better time (if there can be such a thing!) to be diagnosed – the medical technology is racing ahead and the artificial pancreas is currently going through clinical testing right now. We’re very, very lucky in the UK because although many of the big pharma companies are USA based it’s actually the UK and Europe that gets to use the new stuff first because the FDA takes forever to allow things through and they don’t have the NHS.

Also remember that the diabetic with the best health for the longest time is the one that’s the best educated about their condition. Get the Hanas book and you’ll soon be an expert. It’s horrible that you have to do it…but as I started out saying – welcome to the club.

Sign up to the CWD email list 🙂

Good luck.

Heidi
x

You have kind of suprised me there Heidi “horrible club” will that instill confidence ?

It’s a horrible club because no one wants to see their child with this condition. It’s life long and going through childhood and teenage years with it is not easy – I wish it was. You surely understand as you’ve had it since you were 10 years old?
I can only be honest – it *is* a horrible condition and I wish I could take it away from my son – it would be far, far easier for me to have it than for him.
Don’t we all want the best life for our children?

my daughter 5 1/2 and she has had diabetes since 2 ,horrible club , not sure i would use that term but it is .i dont have anything good to say about it sleepless nights with concern at the start our daughter hypo a lot through the night .were ok now three years on and we are still learning now ,carb counting is a must to learn .
we find that here bg can be great for say a month and a change in weather can change every thing and theres also people that just dont get diabetes and feed your kid sweets thats just one thing that boils my blood . wish you luck as its just about all me and my missus talk about these days.

I had it as a kid…17 months old…still got it so that is 1 habit I’ve yet to grow out of. I have to be honest and say I think I’m in a minority as I don’t think it is that bad…it isn’t good by any means but there are far worse complications out there. I say this as someone who has lived with it all his life. I don’t remember ever not being diabetic so I’ve grown up with the routine as normal – which I think has helped me as I don’t know anything else.

I’m sure it isn’t a pleasant experience but in a month it won’t be as bad, 6 months will be better, etc. It will never go away but things will become ‘normal’ and you all will adjust.

Please don’t take this in anyway as an attempt to little this, it isn’t. I mean it as a positive in that things will improve.

All the best to you your daughter and your family.

Make sure you keep in touch with your local diabetes unit, they will be a great source of advice, info and local contacts. Also consider joining Diabetes UK for more advice.

It depends on the type of treatment on offer. Mixes solve a lot of problems, but it depends on your child having a rigid diet. MDI can be traumatic – it was in our experience – but it does offer your child the option to vary their diet.

I’ve a friend in her early 30s who’s type 1. When she was diagnosed, her local diabetes support team told her that she could eat as much fruit as she liked, so as a consequence her blood sugar went very high. Conversely, as soon as her teens were done she settled down and her diabetes required very little maintenance (in her own words).

Experiences can vary, it depends on the support you have, the age of your child can be a massive factor due to growth hormone and of course how they get on with the treatment on offer.

My own advice would be to see how you get on for a few weeks, as you, your partner and your daughter’s other sibling will also need to re-adjust. Take time out, be there for each other and see how it all goes. In the meantime, if you need any pointers both myself and MrsPJM are more than happy to lend our ear.

Mrspjm sorry to pull you up about the school nurse thing theres a real issue with schools all over the uk and injections at the moment and its not good reading health and safety b/s and it the parents problem.

Sport wise she’s able to do 2 laps of the green route at gt as well as many other things like swimming ( more like floating and splashing ) etc so don’t let it stop you doing things with her , but one thing we have had is nothing but the best support from the diabetes team and don’t be afraid to call them at anytime regardless of the issue

Oh, I’m only too aware of the problems some people are going through with schools. The best practice currently is going on in Essex where a new protocol has been set up. There is currently a green paper going through parliament on the subject of Special Educational Needs in schools particularly where health conditions are concerned. Various websites are discussing it – http://www.google.co.uk/search?sourceid=chrome&ie=UTF-8&q=Special+Education+Needs+and+Disability%3A+Support+and+AspirationResponse+to+the+Green+Paper+from+the+Health+Conditions+in+Schools+Alliance

As I said to the OP – places like CWD can be a brilliant source of support and knowledge. The Essex Schools Protocol was set up by a group of parents who are all on CWD
http://esi.essexcc.gov.uk/vip8/si/esi/content/binaries/documents/Service_Areas/SENaPS/SEN_Protocols/Essex_Diabetes_Guidance_for_Schools_Updated_Diabetes_UK_05.02.11.pdf

It’s often a huge battle but…particularly for the OP whose daughter has just received the diagnosis…it’s early days and their school (if she’s of school age) could be one of the great ones – there are some out there!

My son’s school have been marvellous. I wish I could say the same for the first diabetes team we had….We changed hospitals and now he receives the very best care possible, in my opinion.

It’s just such a shame that there isn’t uniformity of care both in schools and with Diabetes teams throughout the country.

I have been a Type 1 for some time – now in my mid-40’s – and still get out and rip it up with the best of them on the MTB. Have learnt over the years how to balance Carbs/Exercise/Insulin/Illness/etc. Whilst not an exact science, getting this balance right is essential. I used guesswork for many years (not a good idea) but education and awareness have really moved on. Whilst not available to children currently, I found DAFNE (dose adjustment for normal eating) a real help. Taught me how to manage the roller-coaster of Hypos and Hypers really well so that they are now more balanced. I lead a hectic life (who doesn’t) and I always maintain that I want to be in control of my diabetes – not the other way round. The thing to be is to be positive and look for answers from others that have children with the same condition. Join JDRF for starters (juvenile diabetes research foundation) which will provide leaflets, get togethers, inspiration, etc for the young and families of Type 1’s. Cheers and good luck….

Thanks for your input everyone.

She’s only 21 months so we have been put on MDI as predicting what she will eat in advance is impossible!

Off to hospital as soon as my lazy-arsed 3 year old wakes up. Hopefully they’ll let my daughter out this afternoon and we can get on with it.

Thanks again,

Andrew

(I’m not really called Harry)

Sorry to hear this. I make my life easier/different by only looking after adults with diabetes but there is some excellent advice here.

My only other comment, and I know it is not relevant at the moment but forgive me as I may not remember to post it in 5-10 years time, is to try and involve your child in managing their own diabetes as soon as is reasonable and as much as you can so that if at all possible it doesn’t become a source of disagreement e.g. “we’re your parents and we’ve been managing your diabetes for years so we know better than you”. Otherwise it can make the teenage rebellion years more than usually interesting.

We were one of the first units in the country to introduce DAFNE. It is a self management educational course and really helps patients but it is usually for age 18 plus. However, a version of DAFNE for 11-16 year olds has recently been piloted and by the time your daughter gets to that age it will either be long forgotten or available everywhere.

Best wishes to all of you.

Just got back. They’ll be in until Monday because there is nobody there to give us some safety training at the moment.

We’re doing alright with the carb counting, bloods and insulin dosing and Emily doesn’t bat an eye lid at the needles. We even got 3 hours in the park this afternoon. 😀

In light of recent events in Norway our problems don’t register.

Glad to hear that things are going well so far – sounds like your team is very supportive. You may be interested in the email list just for the parents of toddlers with Type 1, especially as there are other newly diagnosed families on there.
http://www.childrenwithdiabetesuk.org/children-with-diabetes-email-and-mailing-lists/
If you look at the boxes in the right hand side you’ll see there’s one list just for the under 6s. Most people set up a new email account just for the list so you can either take part or just read what comes up – rather like this forum but as it’s all emailed it’s a ‘closed’ community if you like.

Definitely get in touch with JDRF as well http://www.jdrf.org.uk/
as you’ll be able to get a lovely welcome pack which includes a Rufus or Ruby bear which has patches on its body to show where to safely inject.

It’s a long road with plenty of ups and downs but one of the best upsides is the Type 1 community 🙂

Good luck.

Heidi