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!

I think my trust (big Childrens hospital) are very pro pump but they like to get children stabilised and used to giving injections for about 6 months to a year first. Though they will fund CGM straight away. There was a god reason for the delay in starting a pump but can't remember what it was.

Go to A&E. My younger son died from type 1 at 30. When he was diagonsed at 16 he had all the symptoms that you descirbe. It can be a matter oi life and death.

It's a good warning for anyone else reading this who might be concerned about their child but the OP went to A&E several pages ago. Sorry for your loss, that's awful.

There's another thread in AIBU about the worst pieces of advice given on MN.

Not treating a child with suspected Type I diabetes as a medical emergency and going to A&E would be right up there with the worst of the lot imo. I'm amazed MN has let such posts stand.

In other news @HumiditySucks, within a year (if not sooner) you and your DS will be the experts in HIS diabetes. You will know far more than any GP or nurse about how HIS body reacts to particular forms of sugars, carbs etc. Please ignore any twatty medical people you come across – a diabetes nurse who think pumps are 'dangerous' is in the wrong job.

Take it from someone who has been through this several times, you need medical people who your DS can trust, ones that support rather than lecture him. My two had a great children's doctor, but when they moved on to the adolescent clinic, they both hated the team and started refusing to go. They are now grown up and go a superb pump clinic which is very up on all the latest research, gives them all the information they need and then asks them what they want to do. As a result they feel empowered and are happy with their care.

Oh and if you want some positive stories, they both play sport (including representing their schools and universities), both travel extensively (with friends and solo), both work full time (one abroad in a sport/fitness related job) and generally live exactly the same life as their sibling who does not have Type I.

Actually I think there’s some method in their (perceived) madness in not supplying CGMs and pumps straight away.

Technology fails. A lot. Pumps fall off, Libres and Dexcoms end early, sometimes you run out of supplies… you need to be able to stay alive with a basic regime of finger pricking and injecting. You’ll need to fall back on that stuff again and again and again.

Lots of clinics (my daughter’s included) like you to get to grips with the basics for a few months, before getting the tech, to be sure that you can tightly control your levels and stay alive that way if needed. Because you will need to. Finger pricking hurts a lot in the first few days, but then fingers toughen up and it’s okay.

Then the tech rolls out, and that’s great too. We have Dexcom and Omnipod now, and love them. But we mastered the basics first and don’t panic at all if we need ti go back to them.

Thanks again all for responses.

Tonight DS’s glucose levels fell to 6.1 from 16.5 after a whole pizza for dinner with salad and a chocolate mousse (all carefully carb counted) followed by a walk around the block. First time he’s got into normal levels, lowest was 12.5 on Thursday. I’m delighted that they’ve gone down but a little worried about the big drop after eating all that! Bloody rollercoaster this is. Worried about hypos now.

It isn't half a rollercoaster, 6.1 is in itself fine, but I would be vigilant as the drop is significant and might not have settled. I settled for a little higher numbers before bedtime at the beginning because of the worry about hypos. (and they do go a bit lower through the night). But ,on the whole it should be fine, and you do get to know how your son reacts to insulin.

Are you keeping a log of numbers? This is early days so he is still settling but it is helpful. Right now you are working out what your son needs. My son is on lantus/humalog.

My son used starburst initially for low blood sugars, now skittles.

Have they talked to you about the honeymoon phase yet?

His walk around the block will have made the insulin act more quickly, so that will contribute to the lower level than you've seen before.

We have the My Life app which logs all his levels from his glucose meter and calculates his insulin from his carb amounts so it’s all on there. Also Deapp which charts it. It all goes direct to the clinic so they can see it too.

Fuck knows how diabetics coped doing it manually before Bluetooth and apps!

He woke up on 11.5 today. Movement definitely seems to help. We’ve just washed off the trampoline that was covered in leaves that he hasn’t used since last summer so it’ll be a walk or on the trampoline for 10 mins a few times a day as he is glued to his computer. He’s currently creating excel spreadsheets for carbs and free foods! He’ll move more at school obviously.

We should get the Dexcom (self funding) on Tuesday so we’ll have a bit of time to get him used to that before school starts on the 5th.

Feeling much more relaxed today strangely. I feel like I should still be on panic mode!

Been reading about probiotics helping to regulate blood sugars and prevent insulin resistance in newly diagnosed Type 1s so have started him on them today. Wish to god I’d started before bloody Covid! Anyone had any experience with them?

DS is on Nova Rapid and Lantus @User45446

I did say to the nurse about getting him on Probiotics due to the risk of his sugars being affected by illness so thinking it could help reduce/severity of him getting viral bugs etc, but she said not to bother. Strange that there seems to be research saying they can be helpful. It can’t hurt can it?

Op until you can get the continuous monitor, try pricking sides of finger pads rather than center, it's much less painful. You also could try increasing his intake of fat and protein which helps stabilize the carbs that are consumed.

Some good advice going on here and you’re doing a great job getting started. It’s such a shock all round.
We started on mixed insulins for ds 😱 then novorapid/ levemir and I finally managed to get him onto a pump after six months. CGM was in its infancy but I self funded dexcom. This helped me to work out ratios through the day and basals- all pencil and paper 😬. We now have a medtronic pump/ CGM and it self adjusts to work out basals after enough days of info and also puts the background rate up/ down to cope with rises and falls. Not perfect but a huge step forward.

We tag teamed it to check him in the night pre pump/ CGM - I hope your tech comes soon.

OP you’re doing an amazing job and well done to your lad.

INSULIN PUMPS ARE NOT DANGEROUS
INSULIN PUMPS ARE NOT DANGEROUS
That nuse needs striking off the register. She is giving you false and dangerous advice.
There is a difference between a continuous glucose monitor, which is worn on arm and records blood glucose levels, and an insulin pump which delivers insulin. Both work with apps to help look at time in range (blood glucose) and working out carbs/insulin dose required etc.
Get in touch with Juvenile diabetes research foundation. They are brilliantly helpful
Jdrf.co,uk

I've seen your new thread OP.
@HumiditySucks
Have you spoken to your GP? Consultant ?
We've advised you hie to fight for all the medical equipment: pump, cgm, insulin, glucagon injections, libre2, testing strips, etc.

Are you not getting anywhere?
Demand. Be forceful.

This is the same in my trust. Get them used to the basics before introducing all the tech, timings vary though wouldnt necessarily be as long as 6 months. It all varies between patients and their needs.

Tech can fail and be unpredictable so you need to know and be confident in how to do traditional sugars and injections etc too. I’ve been in the NHS nearly 20 years and the tech is now really great for diabetics.

At my trust he wouldn’t have gone home in a day either. More education and support in house for a day or two longer to ensure safe discharge. With diabetic community support too on discharge.