DS 10 - recently diagnosed with Type One

[MrsCampbellBlack]

He was diagnosed on the 26th Feb and had a couple of days in hospital. He is generally coping extremely well - doing all his own monitoring and injections.

We are carb counting and finding this pretty hard going but less than a week in - please tell me it gets easier.

However, I am a total wreck - I literally can not stop crying and am just so upset. Please tell me this will pass. Am back at work today and everytime somebody asks me how I am, I end up being pretty brusque as just can't speak about it without crying.

Not sure why I'm posting really - just wondered if anyone in similar position or further along the process?

I'm not crying in front of him I should add and am encouraging him to talk about how he feels but that's pretty hard for him.

The diabetes nurse said she's a bit worried as he appears to be coping too well. He will see the psychologist in April which I understand is standard.

That's great about the psychologist it certainly wasn't standard when I was diagnosed.

I can't help with how you feel but I expect it will hit him somewhen but you'll be there for him. Do you think he will be offered a pump?

Thank you for your reply.

I've had a better day today - no tears at all. DS also had a good day.

The nurse phoned earlier and talked again about the pump as she thinks DS would be a good candidate.

Am trying not to be quite so obsessive about carb counting but his levels have been good today.

I hope you're doing well Spotty.

Have you got the carbs and cals book? If not buy it asap it's brilliant. There are also courses you can go on different areas call them different things but something like DAFNE, DESMOND or SAILING. Will help to try and get on it soon before bad habits develop like me

It is a shock and is really crap but it'll soon be part of life and 'normal' for him.

Hello love. It is such an awful shock when your child is dx - they call it the shock diagnosis. I think I was a bit of a wreck for a couple of weeks and still have difficult days 8 years on.
It will get better, you will be able to handle it better and carb counting won't feel like such a mighty pain.
My son was on injections for a few months - dx aged 7, now 15. I was resistant to the idea of a pump, but it changed our lives overnight and I very quickly sorted out continuous glucose monitoring with dexcom and it changed for the better yet again.
The children with diabetes 'cwd' (on facebook now) crowd of mums and dads were total lifesavers and I've made friends for life.
Keep going x

Thank you again!

I've requested to join CWD on facebook. We've got the carbs book and I am just weighing and measuring like a crazy person. DS has his first hockey match since diagnosis this pm so undoubtedly I will be a little stressed there but have all snacks etc at the ready.

I have 2 younger children as well and am contemplating enrolling them on the diabetes trial net research project.

The nurse mentioned yesterday she thought my son would be a good candidate for the pump and I am very interested in the dexcom - that is a continual glucose monitoring thing isn't it? I'm not sure if it is funded or not in my area (we're in Bath) but we'd self fund if necessary.

Thanks for your support.

Hope the match went well. As far as possible we try to make things happen for our ds (and do the worrying behind the scenes!).

My son has the animas vibe pump, which also acts as a receiver for the dexcom sensor. You can also get the dexcom as a standalone cgm. Other pumps also have cgm, but I'm a dexcom fan! Push for the pump and cgm, it's the best support your child can have imho and experience. We've self funded for years and it has been a good use of our money. We get more than a week out of each sensor, which helps to spread the cost.

Thank you!

The match went well - he was resistant to testing halfway through but did anyway - was a good 1.5 hours play in total.

I've been reading the fb group - seems lots of people get up in the night to check their children but the nurse told me to only do that if he was high. Do you do this as a matter of course?

It's worth it if he's waking up high to check he's not hypo ing over night or if you've reason to be worried otherwise I wouldn't?

Cool - thanks Spotty!

His levels have got better since we've been carb counting. Will talk to the nurse tomorrow and also asking about self funding the freestyle libre.

I'm a Type 1 diagnosed as a child and have led a full and happy life without any major complications. This has included uni, childbirth, marriage, sport and many a drinking session

I honestly find it all completely normal these days! Sure, I have off days (like today!) but most of the time I'm positive.

Psychologists def weren't involved when we were diagnosed, and I've never been offered that sort of support.

Am a bit down today cos I've recently had another pump rejection Those of you who self fund, can I ask approx how much it costs? How would I go about getting one - would I contactcthe company direct?

Paddy have you looked into how many people in your area get a pump? I know my area were recently in trouble for not giving out enough. Before my consultant said yes I was ready to go on injection strikes!

I'm so sorry to hear this. I hope it goes as well as it possibly can x (was Mumsnut)

Thanks Fifty

Paddy - DS had already worked out from the carbs and cals book that red wine would be a good option I also hope you get a pump soon.

As an aside - we have private healthcover and I just wondered if that would make any difference in the care we get? Has been fab so far but may give them a call tomorrow and enquire.

Your DS is absolutely right!!! Red wine or vodka & diet coke are def my favourite tipple!!

I think private healthcare may well make a difference when it comes to a pump or a CGM

I have had amazing care from my diabetic team but I know from others on here that I am very lucky. I would definitely enquire about the private healthcare.

I too have had great care in most ways, especially when I was pregnant. It's not my consultant that is turning me down for the pump, it's the trust. I have had all the eye checks etc, I refuse to see the dietician though as I don't see the point really.

I didn't realise this but some people transfer out of area too.

Which pump are you self funding paddy? There are so many out there and the forecast updates are amazing.

Mrs CB, night testing is always such a matter for debate. In our case, yes, we pretty much always have checked in the night, particularly so if he's running high or low. We had a trial of cgm whilst he was still on injections which showed in our case some pretty nasty hypos through the night. As soon as he went onto the pump that was sortable. Updating again, as soon as he went onto cgm after a few nights of tweaking we can now just respond to the alarms (we can hear them via baby monitor), rather than get up as a matter of course, although there are still times when we get up to check, during a growth spurt for example, or when he is running particularly high/low or is unwell.

It's a matter of balance and as parents of d kids we need to be as rested as possible and have our mental health as intact as possible - not easy I know, but sometimes you just gotta sleep!

Anyway, I hope you're doing better each day and that you've found that lovely cwd crowd. Give it time, you'll look back in a few weeks and feel more confident still. And push for a pump x

I have no clue where to start Brambles - currently on MDI but want a pump. Seems my only option is to get pregnant or purposely sabotage my control :/

Hi op hope you're feeling a bit more positive. My DS was dx last June at the age of 11 and I felt like life was surreal for many months. I could not believe how life changing it all was, I was completely oblivious to what type 1 was all about. I just thought you had a couple of insulin injections a day I still even now feel overwhelming anger particularly when this bastard disease impinges on my ds's independence. We always said it would not stop him doing things and by and large we've made damn sure it hasn't (even managed a school ski trip!) but sleepovers at friends are tricky because he is very unstable at night and I get up at least twice a night.
We have recently gone on to an omnipod pump and cannot recommend highly enough although very time consuming to set up. We are self funding the freestyle libre and I personally think they are very necessary to achieve good control and worth every penny !
I'm so sorry you are going through this, life is never the same again but it does get easier

Thank you so much.

I emailed freestlye and they said not licensed for under 18's - do they just have to say that though?

The DSN thought we wouldn't be able to get one as they're out of stock.

DS appears to be coping well and his levels seem good at the moment. He will be going on a school trip to france in may which I will obviously obsess about but we are not going to let this define him - it is just an extra thing he has to deal with.

Thanks so much everyone - your advice and support has meant a lot to me.

Hi all - paddy, it's a nightmare, isn't it. Although ds has the pump, we self fund cgm and are hoping one day to have funding. To make an application, as you say too, we would have to sabotage control, which we are not prepared to do.

Mrs c b, a lot of my friends have children on the lifescan button, so it must be doable. Things go in and out of stock all the time. Have you joined 'children with diabetes uk' on facebook? They also have a website.

Anyone can get hold of the freestyle libre, i'm going to self fund that I think as I don't think they're available to anyone on the NHS. Just say it's for you, not you DS!

Op without wanting to scare you I want to warn you. When I was younger (aged 12-14) if I had a hypo at night I would fit. No one told my parents this could happen and it petrified them. Hopefully this would never happen to your Ds, things have come along way, but I think it's best to be informed of things that could happen.