To be sick with worry than DS (12) may have diabetes!

[HumiditySucks]

Please help calm me down until I can get a GP appointment this afternoon.

DS 12 has started drinking a lot more water, saying he feels thirsty. Started about 3 weeks ago while abroad. Obviously it’s hot but this is more than that.

He’s also lost a lost a lot of weight on his stomach. That may be him shooting up in height but he wasn’t over weight before.

Also saying he feels more tired but that could be due to being up until early hours of the morning 😡and sleeping rhythm messed up.

Noticed last night his breath has a chemical smell like acetone.

No Type 1 diabetes in families. MIL was diagnosed in her late 60’s with Type 2.

GP had no appointments by the time I got through this morning so have to try again at 2pm. Aarghhh!

The new guidelines recommend that: all adults with type 1 diabetes should have access to either Flash or CGM
all children with type 1 diabetes should have access to CGM

Nice guidelines. Tell her that!

Please follow Partha Kar on Facebook. He sorts out these type of diabetic teams peddling wrong information x

Also please contact Diabetes UK if you haven't already.

Oh my bloody god! I precisely told her I wanted to alleviate the condition by using all the tech that was available to assist with that. The fucking cow! What the fuck is wrong with these people.

Don't worry big you can't get Dexcom, LibreLink 2 has a facility for a caregiver to monitor sugars. I just got mine this week and the low/high alarms are excellent (diagnosed as an adult so only just got my first CGM. IME it is possible to have excellent control without a pump

In the meantime, if he is using the good old finger pricker, make sure it's not set to go in too deep. I tested myself using my son's once and didn't realize that my dainty little fingers couldn't cope with his settings! Ouch! If his fingertips are soft or if he's not using quite the right place, it does hurt more. He should be doing more on the sides, not on the tips, as there are more nerve endings there.
My son was lucky as when we moved he got the insulin pump ASAP. It does make a difference ,but if it fails he will still have to inject, so it's as well to know how to and me used to it. We still have insulin pens in the fridge just in case.

Yes what an absolute twat. Especially at a time when you need all the support you can get. She is SO wrong on every level. Please ask for a new nurse or better still, a different hospital if they don't support pumps.
You need to get him on a 'closed loop' system for the best control. That is Dexcom/CGM and a pump that automatically adjusts the background insulin according to the CGM. Don't accept anything less.
There will be a waiting list for a pump usually, but there will never be a waiting list for the libre or dexcom now x

Also, you could buy a Libre which will last him 2 weeks by which time you'll have them on prescription x

With the libre there is also an app that family can have where they can see alerts so you could see his blood sugar at school.

The Dexcom is fantastic especially with a pump. The pump is a wonderful invention and like anything, you look after it and learn how to use it to make it as safe as possible. There’s a great Facebook group for parents of children with T1 too.

That's terrible from the nurse.

My friend is a diabetic nurse (hospital based, working mainly with the newly diagnosed). She said it's standard for newly diagnosed to go straight to a continuous monitor under the new NICE guidelines. I'd keep pushing as far as you can on that.
They will save your DS's fingers, and give you peace of mind - they're the most useful diabetic aid I'd say. DH self funded his for a while, but finally got one on prescription this week. It took a lot of persistence though.

A pump would definitely be good in the long term, but it's probably good to be on injections first - so you/he can get your heads around how everything works.

Massive thanks for all of this support! I’ve found another diabetic clinic which looks bigger than ours, 12 consultants rather than 2, award winning apparently. Attached to a hospital in bordering county 30 mins drive away though so not sure if I will be able to transfer. Give it a try though.

Will contact our current clinic tomorrow and insist on a Libre. Nurse who did the training today is on leave now so unfortunately won’t be around for me to give her a piece of my mind. Will try GP also if I can speak to anyone 😡

DS just finally gone to bed. Bit panicky as blood sugars still high (17) after corrective insulin but ketos only 0.2 and we were told it might take a few weeks to stabilise them. We’re doing carb counting rather than standard doses as they did in hospital as they recommended we start. They never went below 14 while in there though.

Not going to sleep tonight and back at work tomorrow albeit WFH. DH at home since this started and for the rest of the week though.

Trying to have a little cry to let the stress out so I can be strong for DS. Measuring out his milk and chocolate powder for his hot chocolate and him waiting 15 mins for it after another his 6th insulin jab. Really hard not to scream fuck you universe!

Sending you lots of hugs. My DS was diagnosed 18 months again. He was very ill with DKA and was in hospital for a week.

well done to your DS for taking it all in his stride so far. It’s a lot to take in, for him and for you.

I’m self funding a Dexcom right now as I didn’t like the libre ( wasn’t accurate), and been told it could be another year before a pump is an option and even then only a certain one will be available.
its shocking that the tech is out there but we need to fight for it for our kids.

just take it a day at a time to start. And have a good cry when you need to!

As a diabetic he will get all his prescription meds/devices for free from NHS (England) as well as other things such as dental treatment. Make sure you apply for a medical exemption card and you just show that to the pharmacy/dentist instead of paying.
www.diabetes.org.uk/guide-to-diabetes/life-with-diabetes/free-prescriptions

@HumiditySucks you are already being a fantastic advocate for your child. Things WILL get better. It really annoys me when people brush diabetes off as no big thing because it is a big thing. But you and your family will learn to deal with it and things will get so much better as you all get into the swing of it.

I don't know if it still exists but there was a brilliant course called DAFNE (Dose Adjustment for Normal Eating) which taught people how to eat normally but carb count and adjust insulin accordingly. Life changer for our family.

Another vote for the course mentioned by @Zonder . It really helped my son to control things. And just to say that he will also have his eyes looked after with retinopathy appointments. So important to ensure that diabetes doesn't affect his eyesight. Make sure that staff at his school, know what to do if he has a hypo or is hyper , my son was the only child in his school with diabetes and the staff really had no clue until the diabetic nurse told them.
Once again, best wishes.

Sorry to hear of twatty nurse. That makes me so angry. Ask away if you need any info.
And yes have a sob. The anger and the why me still hits us all so we do understand.
Glad someone recommended DLA.

This is not for now, but just to mention that you will need support and so will he. At certain times. It is better now with the internet so you can chat to other mums. In the olden days I had a diabetic Christmas party and a week of diabetic summer camp. I adored these 2 times of being with other day diabetics, who 'got me' like no one else did. Don't underestimate that.

As a diabetic he will get all his prescription meds/devices for free from NHS (England) as well as other things such as dental treatment. Make sure you apply for a medical exemption card and you just show that to the pharmacy/dentist instead of paying

He doesn't need that yet as he's under 16 so his prescriptions are free anyway.

Do apply for DLA though, OP. My dd is 14 and has been diabetic since she was a toddler. We get higher rate care as I have to get up though the night when her libre alarm goes off.

Morning @HumiditySucks

I think you are doing absolutely amazing, I'm a bit in awe of how well you are doing, I know 17 feels scary and it's hard to relax with a number like that but it is normal at that stage. My son was discharged from hospital on a Friday, with no clinics or support over the weekend. I phoned 111 twice over the weekend because of the high readings, but you are right, it will take time to stabilise. I learned to think of it as high numbers are the cause of long term problems, low numbers are the cause of short term ones. So it being high but stabilising will be okay.

And fucking scream all you like (I mean I know you can't actually scream - An isolated mountain top would be amazing right now for you!). At this point it is utterly shitty. I spent a long time feeling really guilty about everything and I was in the bargaining stage of grief for a long time. But now, things are managed and I haven't screamed for a while!.

Fight for the DAFNE course, my son never got a place. My sons diabetes has been managed extremely well, that means bottom of the list for everything (I'm not saying that because I am paranoid, my sons diabetic consultant told me that) . He only got the Libre 6 months ago. So manage the diabetes well, but be a pain in the arse alongside it. I wish I had been more of one!

The Dafne course was renamed when I did it to (I think) FEFI (flexible eating flexible insulin).

how does getting up during the night cost you money?

@PeachPRC

www.diabetes.co.uk/disability-living-allowance.html

That nurse is sooo out of date. A hybrid closed loop pump is much, much safer because it stops giving insulin when you get too low so your time in hypo is much shorter. If you ever have the chance, then go for it. It is the future of duabetes care. In the long run it's cheaper to fund pumps and CGM's than kidney and eye operations. I don't understand why they aren't the standard option, so short-sighted.

I'm glad that your son is handling it so well, you must be very proud of him. It's a steep learning curve, but as you get used to the diabetes care and all this information this will become much easier and more normal for you both.

There are several diabetes type 1 forums, they can really help you with any questions (and so can plenty of us here). Don't listen to type 2's, they mean well but living with type 2 is simply different, as is the care that they need. It's hardly comparable. And don't listen to people who say that you can reverse it if you eat cinnamon or carry gemstones or whatever, that's just bollocks from people who refuse to believe that this is a life long diagnosis. And they won't listen if you tell them that this is it. Just nod along and say you'll research it and bite your tongue tp not say that they're completely mental. Best to get your head around that one early.

Mum with 1 with teen DD recently diagnosed with T1. Got Libre on day of diagnosis but hit brick wall with pump. You need to advocate for your child at every appointment. Bigger hospital team seems a much better option. Some teams are more advanced than others. Lots of challenges for you both ahead following a probable honeymoon period at start.
Best advice I can give you is keep everything in proportion, a couple of odd high blood sugars are not the end of the world, especially if you can work out why.

There is talk of diabetic fatigue these days, around the constant vigilance needed to stay within limits. It’s exhausting for kids with T1 and their loved ones.
The new CGM pumps are game changers though and will make our children’s lives so much better.

how does getting up during the night cost you money
It's indirect rather than direct. Loss of sleep on a regular basis has a big impact.