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 mum to a T1 and we’re supposed to be heading to SA next year. I.am.dreading.it! Following this with interest!

I’m sure you have but make sure you have travel insurance with T1 fully declared.

Also I have a friend whose DS also has T1 and she said he hardly needs any insulin in hot weather particularly if he’s in and out of the pool so just be wary about levels initially until you figure it out.

Have an amazing time!

Yes to add to @AutieAdult be sure you have disclosed his conditions to your travel insurer. Even if something totally unrelated happens (he breaks a leg for example), they will use it against you if not declared.
Tell him that Teresa May, Nick Jonas and Olympus gold medal swimmer Gary Hall are just a few well known people with Type 1 diabetes.

@Sortilege really, Italy? I'd kind of discounted the whole of Italy due to the pasta n pizza!! Very good to know. Your comment about modifying the message is also helpful: I think so long as I feel prepared I'll be able to roll with the punches. And you're right, this is all about him watching and learning, too. Thank you.

Thanks @easyday , I will. I've sorted the insurance, it went up a lot because I declared his T1.

OH is type 1 and I am coeliac. TBH, the coeliac tends to be more of an issue than the diabetes. I've just asked OH and he's never been asked to show his doctors letter for his medication.
He did say, though, that jet lag really messes with his body clock and he tends to have more hypos in the days after he has travelled.

Re the coeliac - I've never been to a place that hasn't had GF aware eateries, as long as you look for them. But I do tend to stock up on Immodium and peppermint tea, just in case.

What is 'Talk me down'?

Both my DH and DS are T1 diabetic and DH is also gluten free. We’ve travelled extensively and have never been asked for the GP letters (they are many many years old now). Never had a single issue at security, just put liquids in a see through bag like with shampoo etc. No one has ever questioned needles, they see insulin pens/pumps all the time. DS has just been to South Africa (from Manchester) and had no problem with the libre in any airport or on the flights.
I doubt you’ll need an extra cabin bag, both DH & DS just take a wash bag with all their stuff in, although neither of them have a pump so I don’t know how much stuff you need if your DS uses one of those.
Honestly, not a single question has ever been asked, and we nearly always fly from Manchester.

As far as GF food goes, we’ve had very few problems, I usually search trip advisor using the GF filter to get ideas of where to eat and to check out menus. We buy sandwiches at the airport (Boots do them in their meal deals) and there are other outlets at Manchester that stock GF. If you are on Easyjet/Ryanair/Jet2 it is highly unlikely they will have anything GF on their menus.
Have a great holiday and try not to stress, the next one will be easier and the one after that will be easier still. And eventually it will just be second nature.

Whatever you do, don't let your 14yo pick up on your stress. I'm epileptic and my mum was very highly strung about it, which stressed me out massively.

It's fine to be prepared, but remember that thousands of type 1 diabetics go through UK airports every year. You don't need to get him a lanyard. When you arrive at the screening check, just tell a member of staff your son's travelling with diabetic equipment. I travel with needles and it is rarely an issue because they see them all the time.

The worst that can happen is they'll ask questions. Or ask him to go through the scanner and you'll have to politely say he can't do that. If that happens, they'll do a manual search and take him to the side.

If you get a jobsworth, calmly stand your ground and show your doctor's letter. Ask them to check with a colleague. Ask them to check with a supervisor.

You know the right thing for your son and you are within your rights telling them what needs to happen. Do it calmly and you're showing him that type 1 diabetes doesn't need to be a big deal. You've got this.

Can't help with the diabetes, but re coeliac disease - there's a Facebook page called 'Coeliacs eat out too' where you can search for the area you're visiting, or put a request out for information to identify safe (and unsafe!) places to eat GF. It's very useful in this country as well as abroad for forward planning.

I flew last month and was armed with prescription and GP letter. No one asked for it...no one even questioned what was in my hand luggage. When boarding the gate staff said the plane was full so all bags taken on as hand luggage had to go in the hold. The minute I said that my diabetic meds couldn't go in the hold, they didn't question it or asked for proof, just said No problem.

I don't have any advice but I just wanted to say that you sound like such a caring and thoughtful mum. Your DS is lucky to have you.

You can purchase the sunflower lanyard from the hidden disabilities website here: hiddendisabilitiesstore.com/shop/sunflower-lanyards.html - or you should be able to collect one for free from major supermarkets but I don't know if they've stopped doing that now. Some airports have their own signifier, when flying from Cardiff Airport my daughter and I were given wristbands to wear to fast track us through security etc.

Came to say the same as @DysonFury1 - what a lovely mum you are! Hope your holiday goes smoothly!

I was just coming on to say this. I can't help with the specific issues, but wanted you to know you're amazing in case no-one told you recently. Your DS is very lucky.

I have multiple chronic illnesses and I’ve never flew from anywhere other than Manchester and I’ve never had a problem. I currently take 47 tablets a day, self inject 3 x a week and carry two epi pens. I usually go on holiday for a duration of 1-2 weeks so as you can imagine that’s a lot of tablets! I always keep it in my handheld luggage incase checked baggage gets lost. I carry a copy of my prescription and have never needed it.

i also have a fit to fly letter incase anyone asks due to the amount of medication I require and it has never been checked. I’ve always found Manchester airport to be really good for disabled access, I wear a sunflower lanyard when there and have always been pulled out of the queue and put through fast track despite looking able bodied.

I can only speak to celiac but I’ve always done ok in Europe. Always bring a bunch of emergency snacks with me but a surprising number of places are pretty used to it. You can get a card from celiac UK explaining in several languages what it means. I had to be pretty open to eating whatever was randomly available but usually there were a couple things on the menu.

@Sortilege that’s great to know! I’ve never been because of this!

@eyeslikebutterflies hope you all have a great holiday. You do sound pretty amazing.

I have to say though that the biggest thing that helped me deal with strict GF was accepting that it WAS different and that was ok. It isn’t the same, you can’t just do what you did before and trying to make it that way (and have it not be) was worse for me. Embracing the food I could eat rather than mourning the loss of thaw makes sense? That said I was a 28 year old inclined to look on the bright side and not prepared to eat gross gluten free substitutes. It can feel very isolating.

My ds was dx with t1 ages 7. He’s now 22 and I’ve flown all over the place with him. Always take more kit than you think you need and look out for the frio bags you can use to put the insulin in for the flight.
Dh is coeliac so we take a few bits of food and also google places to eat. So many supermarkets overseas carry gf bread etc now.
half asleep here but I’ll look in again in case you have questions.

Mos this the diabetes uk document you've got? www.diabetes.org.uk/resources-s3/2017-09/Diabetes%20UK%20Airport%20Security%20Pump%20Position%20Statement_Aug%202016.pdf Looks reassuring and competitive- I just found it when googling to check the Libre can go through the body scanner (it can) as I'm T1 and am
flying for first time in 4 years this summer. If your son uses Dexcom or a pump though some of those can't be scanned. For those of us on Libre though, can go through the scanners just need to point it out first.

My father is a type 2 insulin dependent (+ other diabetes drugs) diabetic with a continuous glucose monitor. Until he retired he traveled extensively ( 3 weeks out of 4 routinely). He’s taken more flights than you’ve had hot dinners to every corner of the earth… he’s never had a problem with his glucose monitor / drugs / needles etc

top tips:

Always carry a prescription for all meds just in case you need to refill while away :-)

pack some meds in hols luggage other in hand luggage ( stuff can & does get lost both by passengers & airport staff!)

adjust insulin schedule to account for timezones

carry emergency snack of preference in case of a low ( travel can mess with blood sugar)

I'd just like to say a massive thanks to everyone who took the time to comment. I couldn't get on it last night for some reason - MN was down - and then I went to bed!! But I've added more amazingly useful tips to my spreadsheet and for all of those who have T1 or have a loved one with T1 and let me know that it's fine - THANK YOU. I remember being in hospital with DS when he had just been diagnosed and the nurses said, 'it'll become second nature" - and they were right. It has. So I know now that once we've added this New Thing to the list of New Things I have made DS do since diagnosis it'll become no big deal.

And I really appreciate all the kind words, I had a bit of a tear in my eye!! I have tried so hard not to make this about me, as it's not, but I've found it hard (behind closed doors, late at night, never in front of DS). Being able to write about it here, and having such lovely responses, helps me more than you could all know. Mumsnet at its best. Thanks everyone. You're all awesome.

I have travelled loads with my T1D DH, and had no issues whatsoever at airports. He's been through the scanners with his Libre sensor on, no problems. Just keep your medication in a clear bag and put it in the tray with your luggage, you'll be fine.
Take plenty of whatever your sugar of choice is - schlepping round foreign supermarkets to find glucose isn't how I choose to spend my holidays. We always travel with several bottles of lucozade, loads of glucose tablets and tubes of hypostop.

I'm pretty sure Manchester Airport provide lanyards for hidden disabilities.

Hope you have a great time 🧳 ✈️ 😊😊😊