Newly diagnosed type 1 child.

[ohisay]

My 8 year old boy got diagnosed yesterday as having type 1 diabetes.
We are all very shocked, but he's taking it all in his stride.
We were at the Dr's wondering if he had a water infection at about 9am, by 12 were on a hospital ward learning to take blood sugar and give insulin.
I just can't believe it!
We've been told about the diabetes UK website, and the JDRF for the fact side of things.
I'm just wondering if anyone can recommend online support and chat, other on here, for parents/him/his big sister?
I have Facebook and twitter, are there any good ones on there?
Also, I know he needs a medical alert bracelet. He does a lot of sport, can anyone point me in the direction where to get him a suitable one that's not one of those rubber bands that he can wear for sports? He hates how they feel!
Thank you so much for reading x

Hi
I’m sorry about your little boy, mine was diagnosed 18 months back aged 9. We found the first few months very hard but we’ve got used to it and it’s manageable.
There are many good Facebook groups.
Parents of children with type 1 diabetes in the U.K.
U.K. CWD AG (U.K. children with diabetes advisory group)
T1 children rights at school
Novel coronavirus (Covid 99) and type 1 diabetes
There are many groups and hugely knowledgeable people on them and they’ve been a great resource.

For parents, follow #gbdoc on Twitter.

Thank you lottie, plenty to look at, and a huge amount to learn!
If you don't mind me asking, is there a particular thing you've found hard about it all?

Thank you littlequestion, I will take a look at that.

Ask away....
I won’t lie, the first few months were hard getting used to it and learning about it. I’m a bit of a control freak and it’s not a condition that is very compatible with that because so often his levels just won’t behave. 18 months in that is still what I find difficult. He has dealt with it amazingly. He still gets the odd day when he feels cross with it but largely he just gets on with it. He normally does loads of sport and that can be very tricky to manage (levels plummet immediately) but it has never stopped him doing it at all. School have largely been good, his friends still have him for play dates and sleepovers so we have been lucky.
I’d make sure you know your school rights to make sure he has the care he is entitled to.

It was overwhelming at first but honestly, it’s largely just a nuisance these days (that’s our experience anyway). The dexcom is fab, if you are funded in your area or happy to self fund, get it. Best wishes to you and your boy. X

The control thing rings very true for me too, I like things done the right way, and things should go a certain way!!
With going to friends etc, do you plan it for certain times or with people who are trained or... I don't know! Obviously right now, all it is is me and him and a hospital room. The thought of not being with him fills me with dread already!
Easy going is not a personality trait I posses when it involves handing over care of my kids, even before this!

Ha ha. You could be me!
My boy has the dexcom - it means his blood sugar is sent to my phone every 5 mins even if he is away at school or sport. So I’m pretty relaxed about what he does because I can monitor him from home and check he is ok and then phone him if he needs to do something. I’m happy for him to be with untrained family/friends so long as they are able to recognise an emergency situation. I’m not sure I’d be as relaxed otherwise. And his dexcom also means that he can have insulin/glucose immediately he needs it which means he has a really good hba1c which means again I’m not worrying all the time.
You’ll learn loads the first few months - try to pace yourself but those Facebook sites are fab for learning tips about how to manage it.

@ohisay I read your message about your son, I am sorry to hear about that! It must be hard and scary for both of you. I wanted to share an interview with you that was done with a woman who was diagnosed as type 1 around 11 years of age and who is now 33. She talks about what it was like for her to find out she was diabetic as a child, how she coped with it at that age, how her parents helped her and how she tried to be strong so as not to worry her parents. She talks about things she missed out on and how support networks have helped her. May help you to see what he might be going through.

www.digibete.org is a good resource

Hi. My son was also diagnosed when he was 8. He is also super sporty. At the moment, when his body has stabilised a bit, he will be in the honeymoon period. No one knows how long this lasts and means that the pancreas is still chucking out blobs of insulin but intermittently. We found that if on camping holidays when he was on the go all day, he just had his long acting and only injected at dinner. Reduce amount of insulin if you know he is going to be really active. Don't be afraid to play around slightly with the numbers so if he is sat in a car for a long day - may need more long acting. Also, adrenalin plays havoc with levels. Mine is now nearly 20. What I recommend is that you are super contolling and watertight on boundaries now. Mine has always been obedient, both my boys were bought up to ask if they could eat something rather than just take it and boy was I grateful for that. Read carbs on backs of packets. Jelly babies go with him everwhere. Watersports and sea side you can buy waterproof phone cases that go round neck - use for jelly babies. Mine did his mile swim badge four weeks after diagnosis, has done his windsurf and kayak qualifications, used to play golf, and do archery with me. A few years ago he got into trampolining and competes at a high level (ha ha). I reckon if you are going to have a kid with a 'something' then I'd take diabetes over a lot of other stuff. Scares me now he is away at uni and his levels, once perfect, are not anymore but the basics laid down early on still is. Pm me if you wish. Happy to help.

Oh and be aware at diabetic clinics NOTHING is ever right. They are too high, having too many lows, not eating enough. There is always SOMETHING and it can get a bit disheartening at times.