Talk me down: how the hell do we do this?

[eyeslikebutterflies]

OK I need some lovely, calm and wise MNetters to talk me down / tell me to get a grip. DS diagnosed with type 1 diabetes last year. Diagnosed with coeliac disease 2 weeks ago. We're going on our first holiday since covid AND diagnosis, in July. Abroad. Europe. Flying from the world's worst airport: Manchester. I am doing SO MUCH planning as I have read horror story after horror story about that particular airport (with one memorable story focusing on airport security telling a 13 yr old that her diabetes medication would cause the plane to crash because it couldn't go in the hold....). But I am starting to panic now, with all the shit shows that keep on happening in airports, and that's without having a kid in tow whose whole life has been turned upside down twice in the space of a year.

So far I have:

• Contacted Manchester Airport, 2 months ago - no reply yet


• Negotiating a waiver letter with the airline that says he can have an extra bag to carry on his medication (it can't go in the hold - the temperature will destroy it plus we can't risk it going missing - there's a LOT to take).


• Have a letter from his consultant, saying he has to carry his medication with him, and that he can't go through a scanner due to wearing a continuous glucose monitor (can't be removed from the body, will be broken by the scanner).


• Have copies of his prescriptions.


• Have UK government guidelines printed out re. glucose monitors, scanners and carrying medication.


• Have airport and airline's own regulations printed out, in case we encounter a jobsworth.


• Have a copy of the Diabetes UK guidelines for airports.


• Have checked on the airport and apparently we should get fast-tracked if we can find my son a lanyard that signals invisible disability. Note that I'm not arsed about queue jumping, I'm just worried it will take us a lot longer to get through security due the fact that DS carries needles, liquid meds and can't go through a scanner!

My whole message to my DS since diagnosis no. 1 is that - life goes on, and your life will be no different, we just need to plan a bit more. I so want his first experience of travelling with these shitty diseases to go smoothly, but I keep waking up thinking - what if it's not. What else can I do? What have I forgotten? Does anyone have any advice / experience of flying with T1? THANK YOU WISE MUMSNETTERS.

I’m a type one diabetic, I have never had any issues at airports/taking anything on a plane. I do however remove my libre as I find it aches really badly when flying, like a flu type ache but concentrated around the sensor, I don’t know if its air pressure related.

Have you got food for the plane? Most things they serve are carb heavy, they often have lots of fruit juice and full sugar drinks as well, so be careful there.

My DH is type 1 diabetic. We’ve never had any problem. He takes all his meds/needles in his hand luggage and has never been questioned. He usually takes a copy of his prescription as well just in case he was to need any emergency bits.
In terms of luggage, he’s never taken any extra, everything fit in his hand luggage no problem.
He hasn’t flown with his libre yet so can’t comment on that.

Thank you! That's very reassuring and also useful to know re the monitor. I wonder whether he just do fingerprick tests until we get there in that case, and avoid the whole can't-go-through-a-scanner thing. Really useful to know re. food - still getting my head around the coeliac diagnosis so that could easily have caught us out. And his glucose goes very high when dehydrated so that's a very useful point about the kinds of drinks available. 🙏

When do you travel? If it's within the next month I'd make sure you're there 3.5 hours before your flight and make yourselves known to the staff marshalling the security queues to get fast tracked - still a massive queue, but they are used to processing passengers with disabilities.

And thank you also @ThatsALotOfPassionfruit . As you can tell I'm feeling a bit overwhelmed by it. I just want it to go well for him. We've done loads of things this past year, to show him that he can do anything he wants, and so I want this to be the same.

Print out and laminate a handful of cards in the language of the country you're going to which state your DS's conditions. You can then show them in bars and restaurants. Take more than one in case you mislay them.

@WeAreTheHeroes it's start of the school holidays. It's usually mega busy and last time we only just made our flight despite being there 4 hours ahead. This was pre-covid, hence me being so worried this time around. We'll get there plenty early.

That's a brilliant idea re printing cards out, it's going on my list now!

I've never been to Manchester airport but in Edinburgh we can pay like £6 for fast track security, don't know if they have anything like that? was much quicker for us a couple of weeks ago

My son was diagnosed with type 1 diabetes when he was14. He has always taken everything in hand luggage and has never had anyone ever remotely bothered to check it. He travels for work constantly and has never had a problem. He flew from Manchester last week and wasn't checked. You'll be fine.
Btw; I completely agree with the stance you are taking on this diagnosis changing nothing. I took this tack and it hasn't stopped him doing anything. I worried about him confused but never let him know that.

@eyeslikebutterflies i can understand your trepidation! Fingers crossed it all goes smoothly

You can get the hidden disability lanyards on Amazon.

I don't have any advice but I read this and wanted to say you sound like such an AMAZING caring mum your DS is lucky to have you.

Gluten free translation info

www.celiactravel.com/cards/

Thanks @justanotherlaura , DH is buying fast track passes. And @UndertheEagle that's what I need to hear, thank you. When DS was diagnosed he wouldn't leave the house to begin with and I've kind of shoved him out, got him doing all sorts of activities and things he (and we!) have never done before. He never gets a flicker of doubt from me (I just implode silently, or come on MN!!).

I’m coeliac and never had any issues abroad, and we travel a lot. I always google “gluten free” and the city then make a list of places that claim they’re fine. Supermarkets are always okay even in fairly unexpected places like Albania but i always take snacks with me just in case.

Been flying at least twice a year for 20 years, including tiny airports in Asia where no one spoke English, and i've never even been asked for my doctors letter saying I can carry needles going through security. They see hundreds of IDD people a day probably, they know what libres and pumps look like and understand about the scanner.

Yes to medication in hand luggage but take double the amount and split it between 2 bags because you'll be screwed if the only bag with insulin in it gets lost. Take snacks for the plane, I usually get a meal deal in the airport rather than eating food on the plane because you don't know the nutritional info so can't carb count.

Above all else, enjoy the holiday. It is really important for your DS to find a balance of enjoying himself vs keeping blood sugar perfect all the time. Take it from me, he will cause himself more damage if he resents his diabetes in his teens (very common to get burnout at this age and pretend it doesnt exist).

how old is DS?

im T2, not T1, but have T1 friends who haven't had any problems taking medication in hand luggage. I would get any priority you can though, because the sooner you're airside the sooner you can relax (and buy a few safe drinks!!)

I would take the libra (or whatever) off too & just finger prick, it's one less hassle & he might find (like Sjt) that it's uncomfortable.

plenty of suitable snacks-
remember not to take nuts for snacks.

remember to get water/drinks AIRSIDE (it's easy to get over organised, buy them ahead & have to throw them out going through 🤦🏻‍♀️)

if you're going somewhere foreign speaking, definitely take cards as a pp suggested & make sure you've also looked up food he CAN eat and make a note of the local name.

Im sure it'll all be fine!! I hope you have a great time!!

@ClocksGoingBackwards I didn't know that - on my (now becoming reassuringly comprehensive) list. In fact, it's a spreadsheet: I feel so much better when I have a spreadsheet...!

@BusyBeaver that's incredibly kind of you. Since we had the bombshell I've worked very hard to step up for him, but it's not easy.

@LiveintheNow brilliant link, added to the spreadsheet, thank you!

@PandaOrLion good advice, also added to the list.

Honestly, this is so SO bloody helpful. I am feeling calmer (the spreadsheet helps. I might colour code it... 😊)

I'm a type 1 diabetic and have (had) a letter from my GP. I've only had to show it once in 18 years, for a domestic flight in Australia.
I'm not sure why you have to take much - I just take my blood meter and my pens. Extra insulin/ needles go in with the meter. It's like a pencil case and a wallet. No one has ever questioned it. And my stuff always goes through a scanner - is your sons something special?

My whole message to my DS since diagnosis no. 1 is that - life goes on, and your life will be no different, we just need to plan a bit more. I so want his first experience of travelling with these shitty diseases to go smoothly, but I keep waking up thinking - what if it's not.

So just modify that a bit. This is you and DS (and the rest of the family) learning to navigate it together to find out how to make life run smoothly. That’s empowering for him to participate it. It’s too much for you to somehow expect to magically make it all run smoothly so that you can show him it runs perfectly smoothly. What you’re showing him is how to communicate to make it work. I regularly fly with a wheelchair. Airports do make mistakes, but we don’t let that stop us.

The only other thing I think of is ensuring that travel insurance is adequate. I have medical conditions that need extra cover. Don’t have either diabetes or diet issues though. Maybe one of the others can comment.
Have a great time!

BTW, next time take him to Italy. Italy is (counterintuitively) heaven for coeliacs. They have a lot of us.

We always take 'emergency sandwiches' , despite always ordering a gluten free meal sometimes they go missing or have not been loaded on the flight.

He's a teenager, @Fleurty and @JuneJubilee , and he definitely resents it. I don't blame him tbh, so am trying to walk a line between strict monitoring and gentle reminders - he's already had a few times when he "forgot" to take his insulin with him (and went sky high).

Good point about not taking nuts.