Newly diagnosed type 1

[Crazycrazylady]

My lovely niece who is 5 has recently been diagnosed as type 1. Won't lie and say that we are very upset.
However now I want to step up and be of help. I'm going in to see her tomorrow in hospital.
Any recommendations as to what I should bring / is there anything I can offer/do that would help in the medium term.
Any recommendation would be very appreciated

Hi
What I’d have loved when my little one was diagnosed was a family member offering to learn about the condition and to look after them/include them in play dates with the parents knowing you have the knowledge to do so. My family are lovely but they woefully underestimate how serious a condition it is and have no idea how to do his care. I’d have really appreciated family showing an interest in the day to day care and learning how to treat hypos and hypers.
They may have a lot of appointments in the near future so you could offer to have any siblings? I know we were on weekly appointments to start with.
Type 1s can eat anything so don’t feel restricted in possibly taking a treat for your niece.
And I know I was all over the place the first few months, very tearful and angry so maybe make sure your relatives know you are a shoulder to cry on. Don’t underestimate how difficult it is to come to terms with - I know I had no idea about t1d and its management until my boy was diagnosed and it requires relentless care.
There are lots of excellent Facebook groups your family can join - parents of type 1 children in the uk is fab. I’ve learnt so much from this one so you may want to pass the name on if Facebook is your thing.
Best of wishes to your family, things do settle down and technology is great for managing the condition and is getting better every year.

That was so helpful thanks. I've ordered to row course as I want to have her over for sleepovers etc as I always have. I'm
Not great with needles but ffs if she can manage it i can certainly get over it.
I can't lie though . I'm pretty devastated for her. She's only a little girl and to be facing 6 injections a day seems very unfair 😔

Lottie gave some good advice. Offering to learn about the condition is so helpful in itself.
It will feel awful seeing your niece inject, test bloods, have hypos etc, but given her age you may well find she's offered technology to administer her insulin and test her bloods fairly quickly, which if her parents want it, can make living with the condition a bit easier, especially for children. Developments in diabetes technology is developing rapidly and your nieces experience growing up with Type one will probably involve far more tech than was available in previous years.
Offer a hand to hold and a listening ear in the first instance and take things day by day.

She's only a little girl and to be facing 6 injections a day seems very unfair 😔

Although I wasn't a little child when diagnosed myself I'd like to let you know that all of that stuff becomes your normal life after a while. It's like pooing, takes some time and not always a convenient moment. As an added bonus because you get scar tissue the vinger pricks stop hurting and injections stop being scary after a while. Hypo's and hypers are not fun though and neither is being treated differently. Also helpful bit wrong advice is the most annoying thing ever.

Hi, sorry to hear about your niece. It must be devastating for her and all of your family 🙁. My advice would be to read up and find out as much about the condition as you can. Try diabetes UK website, Facebook support groups etc. There have been massive advances in treatment and monitoring in recent years that are really improving outcomes for diabetics. She could potentially get a CGM or a pump for instance. HTH.

Thanks everyone .
Feeling much more positive today after seeing her. She's doing great already. Taking her own readings .
We're all anxious to get our head around everything for her. Have ordered some books that were recommended for her on amazon. They went out for dinner as afamilu today and managed wonderfully so I ya e every confidence that she will do so well.

If you’re on Facebook I’d recommend Uk CWD AG (UK Children with Diabetes Advocacy Group); lovely people and loads of good advice. Also there’s always another carer awake at 3am!

Ds2 was diagnosed at 4. He used to wait till there was a new TA at school doing his BG test and then yell when they did the fingerprick - and then kill himself laughing at their horrified face. He’s in year 7 now, has an insulin pump, and a glucose sensor in his arm that sends his BG to his phone and watch every 5 minutes (and my phone, too). There is some amazing tech available when they’re ready to look.

Like another replied they can be lots of appointments and plenty of waiting at them so if you can look after any siblings that would be great.

The fact you are on here asking is fantastic. Giving support and learning with her is massive. She will be in a world wind of emotions and tbh it's like grieving. The life you had hoped for your child altered. The children are always more resilient than adults! My girl was 6 at diagnosis and she couldn't understand why I was so teary!
Helping her find support groups and others local would be useful. I can't underestimate the power of peer support. I wish I found it sooner than I did.
My girl is soon 14 and it doesn't stop her doing anything. Positive stories like that will lift your sister's spirits ....as dr google can be all doom and gloom....it doesn't portray the realities and how far care has moved in the last 2 years alone!

As someone else says the best thing you can do is get trained up to look after her so you and parents are confident. We have no one to help with our child and it’s very lonely and puts a strain on things to know if she’s not at school she has to be with one of us. I miss being able to drop her off with a family member / friend while we went out or do something with one of our other children.

My sympathy. Diabetes type 1 is a really shitty medical condition. It's a balancing act. Just trying to keep it stable. But it's there 24/7 and you never get a break from it.

Saying that I had it from aged 1, and my mum instilled in me an attitude that it wasn't 'going to stop me from doing anything I wanted'. Which I have!

Hope she gets a good diabetic team and local help. Meeting up with other diabetics and having a good moan was always my favourite bit!

It will be tough for her parents, there will be sleep deprivation if they are testing during the night and staying up to monitor lows and highs.

Could you offer to cook for them, fold the laundry etc, much like you would for a new baby?

I’m the T1 diabetic in my family, I was diagnosed as an adult and no one really understands so it’s great you are so prepared to learn.

One thing I will say is that there are varying approaches to managing the condition. Try not to offer advice, but support the decision made by your nieces parents. I’m sure that you wouldn’t, but much like pregnancy I’ve found many well meaning people offer me advice (no cinnamon won’t cure me!)

Young kids are pretty resilient, and it sounds like your niece is doing great!

Dgs (8) was diagnosed at 5. It was a huge shock and quite difficult to get our heads round. A year ago he got a pump and a libre which Has made a huge difference. I have done the pump training course and look after him regularly. I can also go in to school if there’s a problem and his parents are working. He is amazingly independent despite having other medical problems and some learning difficulties. It’s hard but the more of you that can help the easier it will be for her parents.