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.

I hope it goes well today. When you are meeting the school, I'd say it's really important to have a plan in place for sport and the playground (if your DS is active on the playground). Your team should be able to help form a plan but it will be trial and error, so it's important that sports staff and playground staff are aware.

Also, I'm sure it will all be fine, but you should know that your DS has the right to test and treat where he wants. He may be more comfortable injecting in the medical room at the moment, but if he wants to inject in the lunch hall in the future, he should be able to do that, so don't commit to anything in the plan that limits his choice. He absolutely MUST be allowed to test his BG in class and should be encouraged to treat any hypos in situ. Some schools still try to make students go to the office/medical room to treat a hypo which is obviously not safe.

If you have time, have a look at the MySugr app which is a really good way of logging levels, activity and food.

Let us know how it goes

@DakotaFanny DD (10) feels shakey when she is low - she feels the hypo coming on and eats a specific number of jelly beans depending on what her blood sugar is. She's very hypo-aware (thank goodness!) and has been since first diagnosed; even picked up that she was low while we were in the hospital. She was diagnosed just over a year ago so we are also quite early in the T1 journey.

I notice when she's high as her behaviour is foul... asked her what it feels like and she says just very cross; she knows she's cross and can't help it; needs extra insulin to take her down again but doesn't want the injection because she's cross and it hurts...

Keeps her kit in her school bag and injects herself in the classroom as necessary. Extra supplies kept in the school sick room (food, insuli, needles). We've been caught out when she left her insulin at home, and when she left it at school so now have spares at both!

You might want to think about a box of snacks & kit (longer-acting carbs and fast-acting) to keep somewhere at school as well.

And there's so much bloody maths - all the time! Ratios, carb counting, insulin calculating... Get a cheap calculator and keep it in the kitchen!!!

Freestyle Libre has been amazing. One sensor lasts 2 weeks & that means at least 98 fewer finger-pricks (assuming 7/day), and you get to see data at 5 min intervals so patterns throughout the day and night can be looked at - not just at the times of finger-pricks. We don't have a miao miao yet but am thinking about it, linked to my phone, so that I can be woken up if there is a low in the night.

I'm not that knowledgeable about other aspects of diabetes, but have come across/dealt with 3 different people having hypos, all presenting a little differently:
Ex-housemate - giggly, not making much sense, clumsy (dropping and spilling things), no focus (dithering about when should be getting ready to go to work), wouldn't accept anything was wrong and had to be nudged a lot to check his sugars and act on them. (He rarely had them, but when he did it was often the morning after a night out...)
2nd one - came across as drunk/sleepy, leaning on doorpost and looking like she might fall, but did have awareness that it was a hypo.
3rd one - acting as if quite drunk, wild/careless dancing (it was on a night out!), clumsy & bumping into people/staggering. (I think this was a fairly severe one which ended with a hospital visit).

All were clearly "not right" or "not themselves", but all could have been mistaken for being drunk unfortunately, which is a risk when older. But also all seemed to be linked either to drinking (hopefully not an issue for you for a while at least!) and/or exertion (eg dancing lots).

Hypo symptoms can vary a lot person to person. For my DS it is a sense of derealisation (so feeling like everything is unreal or looking at it from behind a wall of glass). Lots of people get hungry but for him that is normally when he is on his way back up.

You will get good at spotting them. My DS's signs are generally quite subtle (paler and slightly glassy eyed) but I'm usually right. Once you are in the swing of this, it might be good to have a chat with your DS about how he wants you to act if you think he is hypo. It can be desperately annoying to have someone to ask you to check your glucose, but on the other hand it can be important. You'll need to find the least annoying way of doing it.

Also worth bearing in mind that there are hypos and hypos. A fast drop or a low low can feel and look quite different to a mild dip.

@worriedaboutmygirl makes a really really important point here, although people in hypo are difficult to reason with and dont remember anything they did whilst hypo.

For my EXP before kids i sometimes had to rugby tackle him to the floor to get the sugar in him. He was sometimes violent when low.

Once i had kids, if he was aggressive I called an ambulance and sometimes they brought the police too (locked me out with 3 DC in house screaming)

But he was not hypo aware.

With DS who is, he is so aggressive when low that my neighbours must think I am a lunatic. It is a war. We both try to stop it early as it can get very bad. He is 10.

The sensor everyone is talking about does help with this and I can send you the miao miao, because we didnt like it. For some, seeing 24/7 blood readings is too stressful (especially with a child who sneak eats)

chickeny that is beyond kind of you. Aren’t they very expensive?

Meeting at school went okay but the senco sent the first aider....which is fine because she was nice and she will deal with DS on a daily basis, but it did make us feel that he is not a major priority. Of course we know he’s not in the bigger picture, but I do want to shout “why hasn’t the whole world stopped?!?!?” Haha.

Should be getting lots of passes and arrangements are in place so hopefully all the promises come off and then we just wait and see. DS has certainly coped well this morning - done all his readings and happily injected in front of a total stranger in the meeting, so feeling okay.

Libre looks like the definite plan, so I would be very interested in the Miao Miao.

The kindness on this thread has been so uplifting. I hope you all don’t mind me still checking in sometimes.

It is slung in the cupboard unused, so better to go to a good home. They do arm staps on Ebay for a few pounds, the stickers were no good for DS. I don't want anything for it, it was purchased with his DLA money, not my income.

Just PM me addy and will send it over x

I know what you mean, it is a steep learning curve and EVERYBODY knows about diabetes. But you will get to know about your DS diabetes and in 3m it will be a walk in the park (until the first sick day, basal adjustment......and on) but you will realise that this is manageable and that whilst this isnt optional it doesn't have to be a big deal 24/7

Always here, anytime

BTW haven't even had the care plan meetings for my 2 yet, usually we get it done in October, but they are old times now (both diagnosed at 3)

I think I’ve PMed you chickeny

OP
I work in a high school that has quite a few students with type one.
It would be our first aider( ex nurse)that you would see as well and it is taken very seriously. Our SENCO will oversee the healthcare plans but it is our first aider that will manage them.They also attend additional training with our local health authority.
Also at my school all staff will be made aware and additional procedures are put into place ie Walkie talkie, toilet card etc. Students also have a box with extra insulin and suitable snacks and often come at break and lunch to medical to check their levels.
Communication between yourself and the school is key.
As other have said it's the shock and before you know it will be second nature.
Thinking of you.

That’s good to hear justaweeone, thanks. He goes to a really great school so I’m sure all will be well. He came home armed with the passes, so it’s looking good. He is mostly delighted by the one that allows him to skip the dinner queue although how we navigate insulin on school dinners once we start to carb count is beyond me!!!

@DakotaFanny Does he have the Carbs and Cals app on his phone? It might be worth having written into his care plan that he is able to access his phone for reasons of his type one diabetes - e.g. to look up something on Carbs and Cals, or to text you a picture of his food so that you can help him with a carb count. My DS eats the same lunch most days and otherwise he just guesses (he's been diagnosed a while so this is second nature), but it is a help to know that he can look things up if he needs to. He is also allowed to text me for advice.

I’ve downloaded the app and got the book and we will download it to his phone too. It’s amazing isn’t it?

His school has a strict no phone policy but we’ve asked for him to be allowed it, on silent, in his bag for contacting us if he needs to. That was the only thing first aider was a bit unsure of, I guess because she doesn’t have the authority to say yes herself. But hopefully she will follow it up and get back to us on it. Regardless, we have told him to take it anyway and if his bag gets searched they can phone us. This will be a cause of stress for him as he is a major rule follower but on this one his safety comes first.

I think you're right, it's because she doesn't have the authority to say yes. If he is using Miao Miao, Dexcom or MySugr (which is the logging app) he'll need to access his phone too.

You'll know by now that type one diabetes is classified as a disability in the Equalities Act so the school needs to make reasonable adjustments. Lots and lots of schools make the phone adjustment for T1D kids these days.

We have just implemented a no phone policy and those students that need it for monitoring purposes are exempt.
They have a red card that they put with their phone.
There are also additional phone procedures in place when it comes to exam conditions.

My DH did some uni exams and he had a bottle of sugary drink, his insulin, meter, some dextrose tabs and snacks. He wasn't using a Libre or pump then though so I don't know what they'd say about a controller in an exam!

Just in case anyone is still there....one week since diagnosis and the reality of it all has hit home. This relentless, routine based fearfulness is going to be with us forever more.

Numbers are now going down and we hit 4.1 today, so now fear of hypos is setting in too. I am tired and scared and sad.

I know it will all get better, but.... sigh

Still here! How did your son feel with a BM of 4.1?

I don’t have any direct experience with T1 but I am a HCP. I can imagine that once that adrenaline rush has worn off the realisation that this is the “new normal” must be hard.

He was shaky. Enough so that school phoned DH but we have spoken to diabetes team and now know what to do when bloods are low, but not quite hypo. Still so much to learn!

It’s a huge learning curve, definitely. You all sound like you’re doing brilliantly.

The fact that you took him to hospital so quickly will have made such a big difference to his recovery. I’ve looked after newly diagnosed diabetics who were really unwell so that’s such a positive thing.

Does your DS know any other T1s of a similar age?

Have you joined the FB page? Parents of children with type one diabetes in the Uk. It's great.

You are doing fab, it must be a shock but I am confident you will both get there
Children are very resilient and they really do cope
Our students with type 1 are so knowledgable and our first aid team are often led by them as those students know what they need to do as your son will in probably a short space of time
It's the parents/carers that worry not only about specifics but about a whole host of things!( still worry about Dd driving though she passed her test 4 years ago!)

Dakota still here.
How you feel is completely normal. I remember driving to a carpark shortly after diagnosis and absolutely howling.

I promise that although yes, this new routine won't go away it will become part of what you do every day. I promise.

It would be flippant to compare it to brushing your teeth but the checks, the injections, the hypo treatments, the stock checks just become part of your day.

In the morning I shout 'have you packed your homework, got your water bottle, PE kit and blood sugar monitor?' It becomes second nature.

You see it written a lot that it becomes your new normal and I sometimes think that sounds a little cheesy, but you know what it's true!

You're angry and sad and scared and grieving for your old life back and for your son to be carefree.
Be angry at the total injustice of it all. It's a grieving process and you have to work through the stages. You're allowed to go through all the emotions you need to.

I honestly believe though that you'll come out the other side and gradually what feels like relentless slog will become just what you to each day.

Be kind to yourself and manage it day to day at the moment. And remember that the technology that your son will hopefully have access to should help make that daily routine much less traumatic.

Hang on in there, you're doing great!

Currently up fighting a hypo for my daughter. I know how you feel. We were only diagnosed in December so still quite new. I just want to go to sleep! Instead I’ve got to fight her to eat something and then wait for her bloods to come up to a point where I am happy to leave her. Then I will have to set my alarm a bit later to make sure that she doesn’t go low again. It’s bloody awful and I hate it. I often have a cry to myself when I’m alone. We will get through it though - until there’s a cure and we don’t have to anymore.