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!

Hi all - we're getting a few reports about our moderation here and so we'd like to clear a few things up. We moderate to our Talk guidelines rather than whether we agree or disagree with something. We have to assume that posters are not qualified to give medical advice because we can't vouch for anyone. This is why we always advise people to see a professional in real life before making any decisions.

OP - we're really sorry to hear of your son's diagnosis but we're glad to hear he's receiving medical attention. We're sure you'll receive a lot of support from parents here with similar experiences.

Wishing you and your family the very best from all of us at MNHQ.

Oh wow. Worst comment of the day.
child with probably diabetes would be pushed straight through A&E

@HumiditySucks sorry to hear of the diagnosis. But these days all children are started out on 24hr monitors, soon these will all be linked to pumps for remote dosing and they won’t have any of the problems older diabetics have. Be gently with yourself and super well done for asking for help and listening to the advice when you knew something was wrong. Go you. You are fab.

Well done OP for spotting the signs and getting him seen. You did really well. You will now be faced with an overwhelming deluge of information but don't panic, it does all become clear and there is lots of support out there. The Facebook group "Parents of Children With Type 1 Diabetes In The UK" is a great source of support and information. Our paediatric diabetes nurses have been amazing too.

Just a note on the technology. It is a postcode lottery on that unfortunately. We had to wait almost a year for a continuous glucose monitor and have not been offered an insulin pump yet (more than a year since diagnosis). It is definitely worth fighting to get a Dexcom CGM if you can.

Hopefully, your ds is already feeling better with some insulin by now.

Also, finding it highly amusing the idea that being a Mum to a Type 1 doesn't make you an expert. No, perhaps I don't know all the latest research but I damn well am an expert in keeping my child alive! Doing that requires constant assessment of the situation and decision making all day every day and often through the night. Hats off to the people who manage with very young children. It's hard enough with a teen!

100% we are! (fellow Mum of a type 1 here)

We got dexcom funding by the way - follow Partha Kar on Facebook if you don't already. X

Ps I'm still in shock that people said not to go to A&E and that he wouldn't be prioritised. My son was really unwell and Googling it, I suspected type 1. I had some wee stick tests from a previous infection I had and I dipped his wee to check for glucose - it went dark brown in seconds showing shit loads of glucose. We went to A&E and as soon as I said what had happened, we were literally whisked through! Never been seen quicker.
It absolutely IS an emergency. Undiagnosed Type 1 is an emergency and a death sentence if not dealt with very quickly.

I hope your son is doing ok today OP. I'm so so sorry you're going through this. Follow Partha Kar on Facebook and also there's a brilliant group called 'U.K. CWD AG' which is a parent group for type 1 and great for advice xx

@HumiditySucks

Hang in there op. Thinking of you. It's a tough diagnosis but if your ds wants some inspiration Steve Redgrave won a gold medal 3 years after being diagnosed with type 1.

My friend said the first 6 weeks was the hardest when his dd was diagnosed, he's a qualified dr but couldn't bring himself to inject his then 5 year old dd, his wife had to do it! But 3 years on shes got a pump and is in brilliant shape

This is a really feeble response. It isn't a question of alternative viewpoints, or even who is medically qualified and who isn't, it's a question of what is the appropriate course of action if you suspect your child has Type I diabetes and the answer is to seek urgent medical treatment. It's right there on the front page of Diabetes UK and NHS guidelines:

'Undiagnosed Type I diabetes in children is a medical emergency'

Therefore if you cannot get an urgent appointment with your GP, a visit to A&E is absolutely the correct course of action. Anyone suggesting it isn't, is wrong.

I agree, the posts from arrogant posters insisting that A and E isn't the right course of action should be deleted. I feel really strongly about this, we nearly lost my sibling to undiagnosed Type 1. It's dangerous 'advice' and should be treated as such.

I think A&E was absolutely the right place to go. They would soon send you packing/ leave you waiting for hours if it wasn’t.
New diabetes has to be an emergency surely - it can present with an actual emergency- hypoglycaemia/DKA or it might not have got to that stage yet - but it needs managed ASAP.

Any clinician - Doctor or Nurse must know that

Honestly there are too many administrators and receptionist making really serious decisions that they do not understand these days. Apparently innocuous symptoms herald serious illness, but that doesn’t seem to be understood anymore. I dread being properly unwell. I’m scared I’ll know I need seen, and won’t be able to get past the first hurdle

So just back home from hospital now after a : night stay. It absolutely was an A&E job. I was told that most DC come in extremely unwell with the keto acidosis and we were lucky that DS’s body had coped really well with no effects. Big influx of DC being diagnosed since Covid apparently. They had 4 alone over last weekend!

He had a McDonalds on the way home. Calculated the carbs, did his finger prick test and took the right amount of insulin for it all on his own with the help of the app on his phone. So proud at how he’s not been phased (yet), picked it up and is getting on with it. Expecting him to be sad, angry, frustrated at some point.

I really didn’t know much about Diabetes until literally just before I took him to hospital and I am absolutely disgusted and furious that it looks like we’ll have a fight on our hands to get DS and glucose monitor and pump. I mean WTAF the tech is there to make their lives a bit easier without upwards of 12 injections a day and the worry of a hypo or DKA!

£159 a month just for a glucose monitor so my kid’s fingers don’t get ripped to shreds!

Then £240 a month for an insulin pump. So £400 a month so I don’t have to worry about him going into a coma during the night.

I have a SEND child too who I have been fighting for for years with little progress. I just cannot fucking believe this!!

It many be worth applying for DLA for your son, which many have been successful in claiming for Type 1 - certainly would help with some of the costs. www.childrenwithdiabetesuk.org/benefits-and-allowances/

Glad to hear he is doing so well.

Looking at some of the info out there he should be eligible for a continuous glucose monitor on the NHS but as you say the insulin pump may be a battle.

www.diabetes.org.uk/guide-to-diabetes/diabetes-technology/cgm-flash-pump-who-qualifies-on-nhs

Unfortunately type 1 diabetes can be expensive, I would however say learning to manage it for a decent amount of time without a pump etc is a really vital skill for the times when you can’t use one.

I have a libre, the NHS does now provide them to everyone, but again as annoying as it sounds I would hold off until he has good manual control. You can set up optional alarms so low or high glucose would set it off to wake him up.

One thing to look out for that a lot of people don’t realise is that illnesa, stress etc can all have an impact on your blood glucose levels. Also remember that very low blood glucose levels stop your brain working properly, this can cause odd behaviour, aggression, anger, memory loss etc so if he is an arse, try to think glucose first rather than being an awkward teenager.

Him doing well now is great, but don’t be surprised if in a few weeks he gets diabetes exhaustion and gets down or angry about it.

You’ll be surprised how quickly it does become a fairly passive part of your life. If he is sporty you can get libre covers, I’ve had a few ripped out playing rugby, so if he does go the libre route make sure he covers them properly, I may learn to one day.

I think I mean fatigue rather than exhaustion

Agree with everything @Simonjt is saying. Knowing how to manage manually is vital and learning pump etc would be overwhelming for now but definitely beneficial for the long term.

NICE guidelines entitle all type 1s to the libre now though and most kids get a pump just not straight away.

Why would you need to pay £159? Where are you based? You should be referred to a Diabetic Consultant asap. I get everything for free: Medtronic pump, cgm, libre2, testing strips, all prescriptions.

And so I should. Diabetes is a really shit disease. It's 24/7, 365. No let off. Every now and then the relentlessness of it pisses you off. I'm glad he's coping well now, but it's very early days. he will go through many different emotions as he goes through teens and adulthood.

You should not have to pay for the pump as most people now get them on the NHS, however I think that you should allow your DS time to get used to having T1 and dealing with the first few weeks of diagnosis. Don't forget he will be back at school soon, doing PE/games and getting used to have to deal with diabetes when at school. He will have to learn to do some things differently, and won't want to cope with more at present. The pump is great, but he will have to get used to that in time. He should be seeing a paediatric diabetic consultant and or nurse and dietitian, so lots to get used to.

All the best. And well done for getting him seen quickly.

OP, if you are UK based you don’t not need to pay for glucose monitoring or a pump but you will probably have to wait a while for them. £159 is the dexcom but the Libre is a little cheaper - about £100 a month and whilst it isn’t as sophisticated as the dexcom, plenty of us manage with it with no trouble. Don’t discount it without trying it first.

apply for DLA - you will get middle rate care which is a help. When that kicks in, you may also be eligible for additional premiums on tax credits or universal credit. You would also be able to claim carer’s allowance if you don’t work.

You shouldn't be paying for Dexcom either - Dexcom One is now on prescription and the only criteria to meet is being Type 1 diabetic. Definitely apply for DLA - you will get middle rate care with no questions.
I totally understand how you're feeling about having to fight for everything. It honestly makes me sick. But hopefully the technology for diabetes won't be a fight much longer due to NICE guidelines having very recently changed. When we had to apply for Dexcom (before guidelines changed), I brought up health inequality a lot and asked why only the wealthiest children could have the best technology.

Thanks for the responses.

Diabetic nurse said we’d have to wait 3 months for a Libre on the proviso of 8 blood pricks per day. I want one now as his poor fingers are already shredded so have been told I’d have to self fund until then. Dexcom will not be funded at all. Our CCG is Essex and it seems it’s a postcode lottery. An insulin pump will not be funded at all over 12 years old unless we can prove a fear of hypo attacks which we will obviously have to try to do.

Diabetic nurse was telling me the insulin pumps are dangerous and is obviously not a fan so probably won’t be in my corner. I’m already planning to write to the CCG,

I’m leaning towards the Dexcom as I want to be aware of his sugars while he’s at school when he does PE and when he walks to and from school and I can see them with that.

Diabetic nurse was telling me the insulin pumps are dangerous and is obviously not a fan so probably won’t be in my corner.

How dare she? Can you ask for a different diabetic nurse? She's not in a position to say that given that so many children and adults do very well on them.

Omg this is completely terrible. There is NO wait for a libre and you do not have to prove anything anymore. We left hospital with one after diagnosis. She has got this totally wrong.
Ask for a different nurse, or get referred to a different hospital. The only requirement for a libre is to be type 1 diabetic. Your GP could even prescribe them. Let me find you some links

jdrf.org.uk/news/everyone-with-type-1-diabetes-will-be-offered-flash-or-cgm-technology-free-on-the-nhs-in-england-and-wales-new-nice-guidelines-published/