To be annoyed by judgement when giving my son “junk food” that he needs?

[TammySwansonTwo]

One of my boys has a medical condition that causes dangerously low blood sugar. If I’m at home I have prescription methods for treating this but its a faff, requires mixing etc.

If we are out and he starts showing symptoms, I tend to give whatever I can pick up from a corner shop which could be full sugar premixed Ribena if they have it (but Ribena are pulling full sugar versions), a couple of sweets, lemonade or coke, followed by some carbs like breadsticks, until I can get him home and manage it more effectively.

I’ve only had to do this a handful of times and every single time without fail I have people tutting, staring or making audible comments. He’s small for his age so looks probably about 12-13 months old when he’s actually 18 months old. Obviously I wouldn’t normally give these things to a child of that age but needs must.

Part of me wants to explain to these judgemental people that the sugar is protecting him from potential brain damage but frankly my son’s medical issues are his business, not theirs.

AIBU to think it should occur to people that there may be a reason for it, or is it not something that would normally cross people’s minds?

Thanks Fairy, I will ask about polycal. Someone also suggested the little tubes of writing icing so will pick up some of those.

It’s really not feasible to make up the sachets when you’re out - they’re huge, I’d have to cut them open, mix it with water and the decant a specific amount into another bottle for him to drink, so he doesn’t have it all too quickly. They’re fine at home but a bit of a pain.

Live all the suggestions from people who have never had to try and force themselves to chew up a rank chalky glucose tab whilst feeling sick dizzy and shakey!

Ribena is my hypo cure of choice. On. The hunt for something new because of the sugar tax. Coke gives me reflux but will do if nothing else. Of you catch him before he's too low op my OH finds raisins work supprisingly well (but don't work for me)

Have you heard of the libre system? It's been life changing for both mine and my OHs control and we can spot a low before we even get there now. They have a website but feel free to pm if you'd like some real user info too 😊

What I’d really like is a CGM for at least a few weeks, if not a few months, to see what his sugars are doing. No way the NHS would fund it though so once I’ve seen his consultant in a few weeks I may self fund.

I’ve heard from some others that the libre isn’t as accurate with lows (most monitors seem set up for diabetes, understandably, whereas his bg never usually goes above 5). Not sure whether this is true or they were unlucky

The hospital have told us to only test him when he has symptoms but he can be very low and have none - the other day he woke up at 2.8 and with ketones of 1.7 and he seemed completely normal. When I’ve done random spot tests he can be randomly low with no signs. This is why I want a CGM, but I am sure they’ll refuse.

Some people find the libre is way off for them but mines pretty accurate (usually within 0.1/0.2 if a finger prick, but because it it taking your levels even when your not scanning it tells you which way your levels are going. So for eg. I've just scanned mine and it's 5.2 but I've got a slow down arrow which means my levels are falling slowly. At this point it's fine because I'm having lunch soon it if I was about to go for a run or something I'd know I need to eat first as I'm already dropping. Does that make any sense?

Cgms are notoriously hard to get. Which is daft because it leads to better awarebwss/control. The libre is avaliable on prescription in some areas. I self fund mine at £48 every 2weeks it's not cheap but worth it for the lack of complications for me

Mumsnetters always seem to experience disapproving comments from other people. I've never known it to happen in real life.
You are very lucky then. I have worked with children with special needs so because of that I will never ever judge but a lot of people do.

I have been called a shit teenaged mother for letting my DS play on an I pad (with no volume) in the doctor surgery (I am 33)
My friend who had a visual impairment has had people say to her she is not fit to be a Mum
Some people are awful

A woman with a child said to me "What are you looking at?? Fuck off!"
I was not looking at anything I was worrying about how I was going to deal with my own child's school bullies - but to her I was satring and judging. I hadn't even seen her.

Another woman sneered "So what are you going to do, call social services then?" when I looked at her. I looked at her because we were on an escalator and I was preparing to get off so looking at the people ahead.

A lot of people imagine others to be interested in them - but really most of the time they are not. They also love a bit of self-justification. "I was judged... AIBU?" - Response - "Of course YANBU -you are fab !"

People can be really judgy (as one or two on this thread have shown). You should be able to get glucojuice on prescription which is much easier on the stomach than glucogel. My son carries jelly babies, skittles (for any unplanned activity), glucogel, elovate powder and glucogel (in case he can't keep things down vomiting as it is rank but can be absorbed through the cheeks).

Some people use coke as their hypo treatment of choice as they find the caffeine and fizz help with the glucose absorption.

Fruit juice is a bit slow for us unless only mildly hypo.

Dextrose tablets are rank and difficult to chew. A tube of Love Hearts makes a slightly more palatable alternative.

Not any help relating to your original post but I was just wondering if scottish tablet would be any use to you? It's pure sugar and dissolves easier in the mouth than things like glucose tablets. Plus it tastes nicer.

That's a good idea Flavia, although it's practically impossible to get south of the border.

I get my fix in Thornton's PerfectlySymmetricalButtocks

And that sentence is not something I ever expected to type

It's not as good as the stuff I got in Scotland but cheaper than a ferry!

Kendal Mint Cake?

Ooh I didn't know they sold it in Thorntons down here Flavia! I used to work in Thorntons in Glasgow 27 years ago, so obviously they sold it in there. We were all puzzled by a bloke who came in asking for "Strathaven toffee", it turned out he meant tablet!

DS1's currently doing an online order of tablet from Thorntons! Thanks for the tip Flavia! 😆

" Mumsnetters always seem to experience disapproving comments from other people. I've never known it to happen in real life."

it does if your child is disfigured in any way, trust me.

yes you could get some Kendal's Mint Cake to keep in your bag.

PerfectlySymmetricalButtocks oh, lovely! Enjoy!

We will! Thanks! 😆

@TammySwansonTwo

My DGS has a very similar condition - his is a metabolic condition and if he doesn't eat for any reason, then within a matter of hours he could end up on hospitalised on a drip. He tends to "crash" a lot at places like soft-play so I always make sure that I've got a couple of Jelly Squeezes with me. It's got more or less the right amount of everything he needs in it. Most supermarkets have it - I bulk-buy mine through Amazon so I've always got some.

His NHS powder is called SOS - but sometimes he refuses it as it is so sweet. We only use SOS if he's ill - not when we're out and about.

I have two type 1 sons albeit a bit older than your DS. Luckily we have a pack with us at all times as I need their medication and I always have snacks and glucose tablets in there but if we had forgotten and there was only Coke to hand I wouldn't hesitate (and he's never had coke before) ignore the people who feel the need to judge not knowing the full facts!

Like PP have said I would have a little box with snacks or I highly recommend the globose tablets - you can get from pharmacy and they have different flavours and are smaller so would fit in a pocket!

Sorry hadn't read down the whole thread when I posted above...

I would just carry a bottle of Ribena with you (we used to have this and a little plastic cup marked to 200ml which is the amount they needed)

Hats off to you for coping with an 18 month old, my sons were ( 5 and 7 when diagnosed (1 year and 18months ago now) and that's hard enough.

My eldest had the libre - it wasn't very accurate and made him very anxious! We are in Greater London and got a free one sensor trial through our hospital does yours offer this? It did help seeing the pattern with certain foods (eg saw after pizza he had 2 peaks etc)

Also we get DLA which covered the cost of the libre, it now helps towards food and snacks etc. Like you said I feel my children eat more sugar and unhealthy snacks now than before they were diagnosed!!

There is also a parentsof type 1 Facebook group if you haven't already discovered it already, which I have found invaluable, let me know if you would like the link! Lots of food and snack ideas and support!

Tammy,

I'm not going to make suggestions or try and give you tips because, quite frankly, you're doing great. The fact that your son looks like a perfectly healthy boy as opposed to a sick or disabled child is down to you, to your instincts and to your ability to keep all those balls in the air at once. The downside of him appearing so "normal" (hate that word but I can't think of a better alternative!) is that you will be judged (always!) as though your situation is "normal" - in which case, okay, I guess you could be reasonably seen to be irresponsible... But your situation ISN'T normal. It's exceptional. And so is your son and so are you. It's hard not to care and become conscious and flustered when you feel those eyes on you, but you know what?! You're doing exactly what your boy needs you to. Getting it right FOR HIM. And he's the only one you ever need answer to...

I am in a similar (though not identical) situation, a few years further down the line to where you are now. I don't know that it's gotten any easier with time (and certainly I'm with you re the sugar tax and all the changes it's brought about!) but with each day that passes, I feel prouder and prouder of my exceptional children. I KNOW that I do right by them and that, to me, is a good enough feeling to be able to focus on and keep in mind when things are particularly difficult.

You've got this and you're doing great. Don't forget! x

Good luck to Ribena their low-sugar stuff tastes like soluable aspirin!!! I love Ribena.
There’s always someone somewhere who wants to give disapproving looks or digs, whatever you do, you won’t win. Just know that YOU are in the right, and it’s no one else’s business unless you’re lighting fags for your kids or something you know what your son needs.
Energy drinks in kids hands makes me feel bad but if other ppl give them to their little adhd kids that’s their problem xx