14 year old smells of acetone

[DakotaFanny]

Just that really....he says he feels absolutely fine but the following things are really bothering me.

He smells like I smelt when I did Atkins! He eats plenty of carbs.

He is suddenly heavy eyed- his lids are more closed than usual. But maybe he is just tired! He’s been up a bit in the night going to the loo etc.

He’s drinking loads (but seems to be doing this because he’s been told we should drink 8 glasses a day etc.

He’s weeing a lot (see sleeping but also, increased liquids so of course he Is!)

It’s all so easily explained, except for the smell, and as I said he says he feels absolutely fine.

Would anyone be worried??? (He is never ill!)

Thank you oh wise mumsnetters.

Glad you spotted this and got him help so quickly.

It wouldn't be a bad idea to pass on what you now know to those around you. I remember our GP telling us that over the years he had observed T1 occurring in clusters -with cases often picked up within a few months of each other . I don't know if he was right but if he is, others might not notice/react as promptly as you have.

I’m sorry to hear about his diagnosis but I’m so glad you went when you did. I hope things go well for you all.

Thank goodness you acted quickly and went with your gut.

for you both

So sorry for your son's diagnosis and well done for spotting it. My DS smelt weird for a couple of days before his diagnosis but I didn't know what it was. It sounds like you are getting good support. Perhaps you are watching the Digibete videos? They are excellent and you and your son might want to check them out if they aren't the ones you are watching. www.digibete.org/new-to-t1d/

There are lots of good support groups on Facebook including UK CWD, and there is a specific ones for Parents of Teens and for teens themselves (no parents allowed).

It's really ok to feel sad about this, both you and your son. People will try to minimise the emotional response you are "meant" to have, but you are allowed to respond however you want. On the other hand, it does become normal after a while and there are very few things it can stop your son from doing.

I hope you are able to get some rest. Are you in the hospital with him tonight?

Sorry to read the diagnosis - but not that surprised.

It’s something you could all do without. Hope your son is ok - both physically and mentally.

My daughter lives in N Manchester, the support she’s had from the clinic has been fantastic. She travels with a bag of stuff and, drug dealers, scales to weigh stuff and then calculate her insulin does.

It’s not stopped her doing stuff, she swam in the great North Swim a few months after diagnosis. She entered it before everything hit the fan but continued with her entry.

It changes everything and nothing. She’s told us and her partner what to do in an emergency.

She’s also vegan - it’s as easy to carb count vegan food as it is meat and dairy.

As a teenager he will have ups and downs, both from bodily changes and just being a teenager. A friend of mine with a 16 yo t1 daughter has an app in which she can monitor her daughter’s levels remotely. ( and then phone here and say have you tested yourself recently.......)

If his levels are all over the place it’s easier to get an electronic reader on the nhs. ( if you are more stable you may not be eligible)

All the best to all of you.

Addendum...

You will also get people mixing up t1 and t2.

People blaming you for giving him too much sugar in the past

People who think that diabetes is sugar related - cut down the sugar and he’ll be ‘cured’.

People who don’t realise that it’s carb foods he must be careful/aware of from now on ( and that within reason as a t1 he can eat as much as he likes so long as he has the appropriate insulin dose to go with it and times it right)

Ignore/educate them.

PS Many diabetics have a bit of a stash in preparation for brexit. Much of our insulin comes from Germany.

My husband is T1. He's 59 and has been T1 since 18 months old.
He's lived a full life, worked full time, travelled, has energetic hobbies etc. We have 2 grown up children who are well. He has an excellent positive outlook about it, which I think has been important. My children all kept an eye on their dad and my grandchildren help grandad check his blood sugar levels.
It's amazing how little people understand about T1 though. They can be very ignorant thinking he's made himself ill by eating too much sugar etc and confusing T1 and T2. It also surprises me how medical people like nurses and paramedics have a poor understanding of the condition (I speak from personal experience).
I can understand how overwhelmed you must feel but in a few months it will become easier and in a year or so you'll all be getting on with things as normal.
Incidentally jelly babies are excellent as a cure for low sugar levels and easy to carry. Also second having a spare bit of insulin stashed in case of a Brexit blip.

Are people serious about the brexit blip?

Lying in my hospital put you up bed doing some reading. So far- good things: Tom Hanks and Steve Redgrave have diabetes (my boy can be anything he wants)

Bad things- life expectancy is pretty heftily reduced. Beyond sad about that. And so wish dh was here to discuss it with. We tackle things like this together and it sucks that so far we haven’t been able to do that.

Insulin levels becoming more stable though, so hoping we may get home today. Then the real (frankly slightly terrifying) adventure begins!!!

My friend swears by

www.worldofbooks.com/en-gb/books/alan-l-rubin/diabetes-for-dummies-uk-edition/GOR004365145?keyword=&gclid=Cj0KCQjw5MLrBRClARIsAPG0WGzKa7L-z3NcJHi1cMrLn4QhUr-K6LHdw5EF4hmabJnFF9yS9rS1OWYaAlWgEALw_wcB

@DakotaFanny

Please don't get too upset about the life expectancy thing.

The better controlled they are, the less impact. It is poor control that shortens life.

The hospital recommended this book. It is detailed and covers everything..

Remember that the life expectancy thing is based on stats. You are not looking at the life-expectancy of your son.

The stats are too general to be helpful. Not all those with diabetes seek or use medical help. Your son has good support and care right from the beginning.

Many in the stats have other health challenges ( like alcoholism/addiction) which put blood sugar out of control long-term. (Diabetes doesn't cause these things.) Many have chaotic lifestyles and lack of control of diabetes is part of that.

Life expectancy is increasing for people with type 1 as treatments and knowledge improve. And it’s an average. Many T1 diabetics will exceed that. I wouldn’t worry about it at this stage.

Yeah, life expectancy for a teen diagnosed now who manages his blood sugar using current technologies will be vastly different to life expectancy for someone diagnosed in 1980.

My 11yo has an insulin pump, a dexcom glucose monitor, lots of fun and excellent blood sugars. It’s doable. Really hard work, life-changing, but - the things I worried about most when he was first diagnosed are really not the things that have been hardest. Its mostly a huge exercise in planning and preparation!

Ask about pumps, and the Libre. No reason at all why he would have to wait for either.

The CWD facebook groups are brilliant (always someone else up in the middle of the night).

as a type 1 diabetic I say get him to the doctor asap- that sounds like me before I was diagnosed - the acetone smell is ketones- which if left untreated can be dangerous- make an urgent gp appointment asap!!!!
and yes- they do a urine test first, if that shows ketones then he'll be sent to the hospital- they might also do a blood sugar test as well- but he musnt do that expedition! if he is a diabetic then the exercise will trigger a further release of sugars into his system , which is a very bad thing!!!!

@WalksWithDinosaurs The OPs son was diagnosed as diabetic the night before last. She went straight to A&E on the advice of posters on here.

DakotaFanny my dh says to tell you about a little gadget called a Miao Miao (!) which he has recently started using. It sits on top of the Libre and gives an audible alarm if blood glucose levels go out of range. He got it to wake him in the night if he goes low.

Diabetes UK campaigned for the Libre to be more widely available on the NHS so hopefully your ds will qualify under the criteria. The continuous glucose monitors (Libre and Dexcom) and pumps really are game changers.

Even if your ds doesn’t qualify, you can buy the sensors (my dh is self-funding at the moment because of the lack of official T1 diagnosis - it costs about £50 for a sensor that last 2 weeks).

Hope you’re home soon 🙂

OP please ignore all of the advice regarding pumps and sensors for now.

Your son is in the honeymoon period and no paediatric diabetes team worth their salt would put your child straight on to these technologies. My children have objected to and repeatedly refused both the pump and sensor. I did try and have a miso miso kicking around if and when you want it. Mine do not was to be diabetic children and be radicalised by having permanent attachments to their bodies. They consider themselves to be children who just happen to be diabetic.

Just focus on the here and now and the essentials. Be wary of certain foods and drinks which have huge carb, my list of wtf foods include...Rubens squash, capri sun, lucozade, iced gems, smarties, skittles....etc. check carb on everything and learn the basics that the hospital are teaching you. Practice them.

Having had 2 T1 DC for a very long time I will give you the following advice. The biggest difficulty diabetic children face is the emotional one. There isn't anything he cannot eat and there isn't anything he cannot do if he keeps this under control.

He will pick up on your panic, so try to stay calm once the shock settles. There is a lot of misinformation out there which is why you must educate yourself, it can be confusing.

I hate this phone

Miao miao
Medicalised
Ribena

I'm so sorry your son received this diagnosis. Once you get your head around everything you might want to explore a minimed pump. It tests and administers insulin automatically to help maintain more stable blood sugar. It will also protect against a hypo during the night.

@DakotaFanny Hope you are doing ok. You'll see from this thread that having a kid with T1D is a bit like having a baby. Lots of people think their way is best, you will get unwanted advice and even other parents and medical professionals may get the facts wrong unfortunately.

Like when you have a baby, the best thing to do is hunker down, assimilate information at your pace and let it guide your son's and your decisions about what fits best for your life.

If your DS is feeling up to it, he might want to check out Diathlete and MissJenGrieves who have different but great approaches to talking about their T1D. Diathlete is on facebook and instagram. MissJenGrieves has videos on youtube and is on instagram.

My uncle had T1 since he was 20 and he is 79 and counting. Don't worry too much about the life expectancy thing, there are multiple reasons why that doesn't mean anything:
-the statistics of the USA (where too many of t1's need to buy their own insulin which they cant afford) are skewing the statistics
-30 years ago people were kept at a higher glucose levels as now too prevent hypo'sp
-there were less possibilities to manage diabetes, meaning that if something didn't work out people ended up with higher glucose levels.

When I was diagnosed 20 ywars ago they told me that 98% of T1's needed eye lasering within 15 ywars. They now tell me that they're not sure if I'll ever need eye lasering. Technology changes so quickly and makes our lives so much better. Your son will be ok.

Get him to the doctor today !! Can’t understand why you are dithering!! Sounds as if he is diabetic and the smell is ketones on his breath !!

Grandmi, the thread's now 9 pages and several days old. Lots of people said A&E, OP listened and took her son, who has indeed got diabetes and is now receiving the treatment he needs.

TL:DR - RTFT.

Thanks Barbara! That’s literally the first message that has peed me off on the whole thread! I mean, I maybe should have gone at 8.45 after first message but even I’m not negligent enough to leave it another two days!!! 🤣🤣🤣

All well here. We go home tonight!!!!!!!

Oh and thanks for all the reassurances about life expectation!