Travelling with our diabetic child

Updated February 2020

Well November is coming to a close, so in honour of World Diabetes Month, I thought I would make a diabetes awareness post.

I know that after Sophie was diagnosed, I spent a lot of time on the internet, searching everything – including how to travel with her. I found it best to read personal accounts from people who have done it – not just generic lists or tips off websites like Diabetes UK or JDRF Canada. I mean, those were helpful, but not exactly what I needed. I needed to hear from someone who had made mistakes and figured out best practices by actually doing it.

So I’m here to share our tips and tricks, so far. We’ve only done a handful of trips; some big, some small, but we learn a little something each time.

Pack extra, and then a little extra more

You may think it’s ridiculous, especially when you’re only going away for one night, or a week-end, and you see the enormous amount of supplies in front of you, but just pack them all.
Our rule of thumb is pack 3 times what you plan on needing. If you plan on needing one pump site change and 200 units of insulin for it – you bring 3 pump sites and 600 units of insulin. See? sounds ridiculous.
There’s a few reasons for this.


One: Because you need to split up your supplies into 2 bags. Never carry all of your supplies in one bag – what if it’s lost? or compromised? Then you’ll have at least what you need and a little extra in a second bag.

Two: Life happens– duh. A pump site fails. Or heat ruins some insulin. An insulin vial breaks. A CGM sensor falls off while swimming….

Three: Your child (or you, whoever the T1D is) cannot LIVE without those supplies, why the heck would you scrimp on them? “Oh I want to bring an extra dress so I think less insulin pump supplies this time…” If these are your priorities, give yourself a shake!

And yep- most trips, you’ll find yourself bringing home 85% of the supplies you packed- cool! I just take out the insulin and keep the bags ready to go for the next trip. But every now and then, you’ll be damn glad you have it all there.

True story- when we went to London for just one night, we brought one suitcase between the 3 of us and the regular huge amount of diabetes supplies. We knew Sophie would be due for a pump change that night, so we had 3 pumps with us. I put 2 in the suitcase and 1 in Sophie’s bag that she wears on her at all times. Well, it was incredibly hot that day. So hot that the Yeoman Warders at the Tower of London had to cut their tours short (because they wear very thick, wool uniforms). The pump kits note on their packaging to remain below 30°C and we knew that the pump in her bag was probably boiling in the sun at around 40°C. I wasn’t sure that pump would be good anymore. (It has a battery inside with radio frequency receivers so that’s the part that could mess up). So we were down to 2 good pumps. Then that evening when we went to change her pump with one of the good ones in our suitcase, we filled it full of insulin and set it to prime— and it didn’t prime– Faulty pump set! We then grabbed the third and last one we had, filled it, and held our breath. It worked. In fact, we held our breath until we got home almost 24 hours later. (We kept the one that had been in her backpack but got too hot, we’d use it if we had to).
Everything worked out in the end – but only because I packed 3x what we needed.
Because of that night, when my husband sees the immense amount of kit I pack for our trips, he doesn’t bat an eye. He takes a shirt out of his suitcase to make room. Sometimes he even suggests we need more.

Security

Anyone who has travelled in the past 18 or so years knows that airport security can be a real nightmare- for all of us.
So how do we deal with so much security, a growing line-up behind us, and the huge bagfuls of needles, devices, liquids, and contraptions (above) that can’t go through the x-ray machine?
Oy.
(Tip: Early in your planning stages, contact your device(s) manufacturers and find out what can and can’t go through the x-ray machines. For example, Dexcom recommends its sensors not go through x-ray. Omnipod says their pods and PDM can, but we prefer to just keep the stuff all together and not risk it – sometimes each bag has ~$1000 worth of medical supplies in it, so lets just have those inspected by hand….)

In England, you can get these sunflower lanyards. They identify an invisible illness. How fantastic!!! These can be acquired by going to the service/help desk in any English airport and telling them why you need it.
We got one for Sophie. We also got one for me but I don’t need it as my illness isn’t invisible in an airport- they see me walking with a cane and are usually quite helpful.
However, only British airports recognise these lanyards right now. We hope that one day, this catches on worldwide.

Anyway, with this lanyard, we can take the handicap line through security (again, we would anyway because of me and my cane, but I’m assuming that most people reading this don’t also have someone in the family with MS… though that correlation is a topic for another day).

When we get to the line, we are prepared and we need to be brisk. We quickly self-identify to the nice folks running the x-rays and security lines that we have some medical devices that cannot go through the scanner and need to be hand-inspected. We always have a doctor’s note to prove this, though they hardly ask for it. (We’ve been asked for a note once when we were moving to the UK and had 6 months’ worth of supplies in our carry-on that all needed to be inspected by hand; then we were asked again at the Madrid airport where I was worried that the letter was in English, but he asked to see her passport to correlate the name on the letter, and then let us through to have hand inspection).

The diabetes bags are always packed on the TOP of our hand luggage so we can grab them quickly and pass them to the security officer. Then Eric and I split up. I realise this is easy to do as we are 2 parents with 1 child. One of us always keeps an eye on the diabetes bags (a: to not lose them, b: to make sure they don’t get sent through the x-ray machine, and c: to answer any questions to the security officers about what is in them) and one of us keeps an eye on our daughter. She’s 11, she can handle walking through the metal detector by herself, but because of the devices she wears, she often sets it off, and they have to pat her down, or swab the devices, which they’re not allowed to do without a parent present.

When we’re in a foreign country and we don’t speak the language at all, it’s a whole new ballgame. We are trying to make sure to look up the words for insulin, diabetes, medicine, ‘no x-ray’ and ‘medical device’ in the language before we go. I then make sure that these are on or in the clear diabetes bags so that they can be seen.

This has proven very important to do in the countries where we don’t speak any of the language (Italy, Spain), as the airport security agents aren’t part of the tourism industry and you can’t expect them to speak any English. In both Italy and Spain, we had to point to these notes to get our point across. (In France, Eric is bilingual in French so we were okay). Each time, it was these little words on the notes that saved our supplies.

Bottom line – be prepared. Have the diabetes bags separate, easy to grab, and a doctor’s note from the clinic (I have yet to encounter a clinic that won’t provide this). If you don’t feel at all confident in the language, have a few important words pre-translated and written out to help you through.

Lows

As you know, hypoglycaemic events (low blood sugars) will happen. Every type 1 diabetic is always on the lookout for them and if they are hypo-unaware, then hopefully they have a continuous glucose monitor or a diabetic alert dog to alert them of falling glucose levels.
However you monitor your child’s low glucose, the main thing is to then feed them glucose to get it back up to a healthier level. We all have our tried-and-true ways of doing this while at home, but when travelling it can be very different.
Something to know before you leave home is how to read nutrition labels in the location(s) you are travelling to, because they’re different everywhere. Know the word for carbohydrates in the language of the country you’re visiting. Sometimes this is obvious- and sometimes you may be visiting a country with a very different language and maybe even with a different alphabet – so knowing what their nutrition label looks like and what word is carbohydrates could be super important!

Photo of my daughter going low in the middle of touring the Pablo Picasso museum in Barcelona… Stuck in a corner downing dextrose tabs because you ‘can’t eat’ in a museum and I thought dextrose tabs were more appropriate for me to say she’s taking medicine….


Sugar can be found anywhere in the world, so it’s not an immediate worry – you will find something to treat lows. But if your child is picky, or you like to be very specific about how many grams of sugar they get for the low, it’s best to come prepared. Don’t assume you’ll find what you want, or even a close substitute in another country.
But no matter what, always, always, make sure you have some on you. If you’re travelling and walking around all day, there may be some unexpected lows, even a lot of them. Having to try and find a store in an unfamiliar area and buy candy/juice/pop in unfamiliar packaging in an unfamiliar language with unfamiliar currency is just not a stress you need at the moment of a low.


Time Zones

This is another aspect of travelling that no one likes, but I never thought of as anything more than an annoyance until we were travelling with a diabetic.
You know how you often have different insulin-to-carb ratios for different times of the day? Or different basal rates throughout the day programmed into your pump? Well, when you just jump 3, 5, or 8 hours and your body has NO idea what time it is; if it just ate breakfast, lunch, or dinner, then you have no idea how much insulin to give it!

Before we moved here and put Sophie’s body through an 8-hour time change, we researched different methods that some diabetics used. Some changed their pump an hour a day. Some stayed on origin’s time for a few days. There were a bunch of options. We went for the rip-off-the-band-aid approach and did it all at once.

When you rip off the band-aid and change the time all at once like we did, be ready for a solid 24-48 hours of wonky blood sugars. But we stuck with it, made her eat on schedule, and they started to make sense again by the second day.

Everyone will have to come up with a plan that’s right for you or your child regarding time changes – it may have to be by trial and error. Start with what you’re most comfortable with and see how it goes.

Eric changing the time in Sophie’s pump by 8 hours as we landed in England.


Those are some of our bigger talking points. Keep in mind, we’re still learning, still experimenting! Below are some more quick tips we’ve picked up along the way:

-Call your airline ahead of time, they can grant you extra hand baggage which can be invaluable when travelling on a budget airline that restricts everyone to one small bag each! If you’re travelling with a companion, you don’t have to pay to select seats together, you can just call ahead and request they are seated next to you as a medical companion. I have yet to encounter an airline that won’t do this.

-Watch the temperatures of your bags. Certainly, keep the insulin in a cooler pack like a Frio wallet, but just as I explained above with our London day-trip, certain supplies shouldn’t get too hot or cold too. These are usually labelled on the packaging. And no, you don’t have to be ridiculously strict about this, but you also don’t want to let your black suitcase sit in the hot sun on a 30°+C day while you sit on the beach and let it bake your supplies.

-If you’re on a longer flight that provides drinks and meals, don’t request the diabetic meal! They’re gross, and a type 1 doesn’t need it, you just have to guess the carb count.
As for drinks, I have yet to encounter a comfort drink trolley that offers anything other than Diet Coke (or Pepsi) as a sugar-free option. If your child wants to drink something other than water or caffeinated cola that they don’t need insulin for, plan ahead and buy some diet pop in the airport (once you’re through security).

-If your child uses a phone for their Dexcom or any diabetes management, know that you do have to put the phone into airplane mode. Airplane mode will first turn off the transmitting function of Dexcom. However, you don’t have to give in and live on fingerpokes. You can go into the phone’s settings and while in airplane mode, manually turn on Bluetooth. If Bluetooth is on, Dexcom will transmit to the phone and alarm, if needed. However, it will not send the data to any followers.

-Don’t forget to pack back-up needles/pens! (So this includes long-acting insulin!) We all know the pump can die completely. Or she could drop it in a toilet! We have to be prepared to always give insulin- always.

I know it all sounds like a lot of check-lists, warnings, and planning, and it is – but we also believe that the opportunities that travel gives our daughter are well worth it. Even though she’s diabetic? Especially because she’s diabetic. Because she needs to see that she has no boundaries in this world, she can do anything, go anywhere – it just takes a little forethought.

Please feel free to comment and leave any tips or tricks on travelling as as diabetic/with a diabetic child. We all need to share the info we learn along the way!

Moving is exhausting

I haven’t posted much in the past 2 weeks because we’ve been so busy getting our house ready to be packed and loaded on the sea can. Because of our international move, we actually have two sets of pack and load days – one pack day and one load day for our sea canister that is heading to England, then one pack day and one load day for our long-term storage – things staying here in Canada for 3 years (like our electronics and such that we can’t use there).

Leading up to our pack day, we had to first pack our suitcases – decide what we will need to bring with us on our persons to England. We are given 5 checked suitcases and 3 carry-on suitcases (but could pay for more, I guess). In this luggage, we need to bring 6 months’ worth of medication and medication supplies like Dexcom and Omnipod supplies. This greatly reduces how much clothes we can bring!!

These are our suitcases- the 3 on the right are all medical supplies!!
6-9 months’ worth of insulin and my multiple sclerosis medication – all of which need to remain refrigerated/with ice packs while in luggage.

Then aside from having to pack our suitcases (so plan our lives for the next 6+ weeks), we have also had to rearrange our house to separate the things going to England and the things going into storage. This also meant a lot of cleaning and purging, too.
People have said to me that because we have military moves and ‘they pack for us’ that it must be easy, but I promise you it is not. To make any move successful there is so much preparing and work involved at origin and then again weeks and weeks of work at destination (sure, they ‘unpack’ for us, but that just means taking things out of boxes at break-neck speed and putting it on any flat surface – they don’t put anything away or organise or clean!). Luckily, this is our fifth military move and I’ve learned things each time and am more and more ready each time!


Then came the packers! An overseas move requires our furniture to all be bubble-wrapped (rather than in quilted moving blankets) so it took the packers a while but soon enough, our house looked like a Tetris game:

Our Tetris house

Once they moved everything out to the driveway to load on to the truck
Sophie was so bored during the 2 days of packing and loading


Now we’re living in an AirBNB in downtown Victoria for the next 2 weeks. Our house sale doesn’t close for 4 more days so we’ll be there every day cleaning up and getting the long-term storage packed then trucked out. We’ll also try to enjoy what there is to enjoy of Victoria down here – restaurants, Market Square is just below our rooftop patio, and FanTan Alley (the most narrow street in Canada) is right across the street:

So, we’re exhausted, but we’re a few steps closer to getting to England….

Is it September yet?