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!

Type 1 diabetes – and travel

So a lot of the point of this blog is to talk about how we manage travelling around the UK and Europe while still managing the ever-present and domineering type 1 diabetes. I will be making many references to diabetes, what we’re doing, what we use, and why. Before we go any further, I thought some of you may appreciate a quick lesson.

Sophie is an insulin-dependent diabetic (T1D or ‘type 1 diabetic’). What does that mean? And how does it differ from type 2 diabetes?

Most people are well-versed with the idea of type 2 diabetes, as 95% of diabetics in Canada are type 2 – which is often (but not always) related to poor diet, increased body weight, and decreased physical activity – leading to the body’s insulin resistance. Type 2 diabetics are still producing their own insulin in large quantities, but their cells just can’t properly use the insulin that is there.

Type 1 diabetes is an autoimmune disease wherein the body’s immune system mistakenly attacked the cells in the pancreas that produce insulin. As a result, the body stops making all insulin.

Without insulin, a body cannot use any of the glucose it eats, leaving the glucose in the bloodstream to rise to dangerously high levels. The body is not meant to have so much glucose running freely in the blood so a type 1 diabetic must inject insulin in order to use and store the glucose.
Type 1 diabetes has no known cause. It is not the patient’s fault for having a poor diet or being overweight. Some type 1 diabetics are pro athletes, in peak form and perfect diet, and must still inject insulin.
There is no cure.
(Insulin is not a cure, it is simply a treatment).

Without insulin injections (or without enough insulin), a type-1 diabetic’s body will slowly die of starvation – or go into a condition called diabetic ketoacidosis that can result in coma and eventually death.


Alternatively, if a diabetic takes too much insulin, their blood sugars can go too low. If they are low or going low, it can be remedied with some sugar- a small amount of juice or candy usually.
That sounds simple and it often is, but the danger of going low is more pressing and immediate than the danger of going high. A diabetic can fall low quickly and if they’re too low, they will lose consciousness and not be able to take sugar by mouth. We always carry a special medication- glucagon– with us which is administered by a needle when the patient is unconscious, and helps blood sugars rise to a safer level. Thankfully, we have never had to use this medication.


So, how do we manage this beast? A few ways:
Sophie wears an insulin pump called an Omnipod . It is a small ‘pod’ stuck directly onto her skin with a tiny cannula injected under the skin that delivers insulin. She wears each pod for about 3 days before changing it for a new one. The pod communicates with its controller via Bluetooth. This pod is programmed to deliver a constant stream of insulin.
However, every time Sophie eats, we need to count the carbohydrates in her food. (Carbohydrates are the part of our food that convert into glucose in our blood). Some of you may be aware of counting carbs for your own diets to lose weight or train, but this must be much more precise. Sophie’s Omnipod is programmed for how much insulin she needs for each gram of carbohydrates consumed. Also, as Sophie grows and heads through puberty, her body’s insulin needs change. We are frequently reprogramming her pod to deliver different amounts/more insulin throughout the day and for each gram of carbs she eats. This keeps us on our toes. We never get too comfortable with diabetes around!

An Omnipod pod – with the formula for insulin drawn on

Along with her Omnipod, Sophie wear’s a continuous glucose monitor (CGM) called a Dexcom. This nifty little device is also worn on her skin with a sensor injected under the skin. It tests her glucose levels every 5 minutes and sends the value via Bluetooth to her mobile phone. Then, she ‘shares’ the information via the internet to our phones (her parents as well as whomever is responsible for her).

What we see on our phones, following her blood sugar (post-breakfast spike)

The Dexcom makes life as a diabetic infinitely easier, as we can set alarms to be notified if she’s been high too long or is going low. Also, it sure makes daily life easier for Sophie! Without Dexcom, she would be poking her finger 10-15 times a day to check her blood sugar on a glucometer. With our current version Dexcom, she only has to poke her finger twice a day to calibrate it.
(But also, she must deal with the insertion process of the Dexcom, which can be hard on her).

So these are the high-tech, amazing devices we use to keep our daughter alive every day. You will see me refer to them often. When we travel, we plan to make good use of both of these devices.
However, anyone who has ever had to visit Apple Support knows that even the most wonderful tech can fail. We’re not willing to gamble with our daughter’s life, so every time we leave the city, we need to pack back-ups, and back-ups to our back-ups. That means we need to pack extra pods and Dexcoms, but we also need to pack everything to go analogue- glucometers to do those 15 fingerpokes a day, and needles for insulin in case the pod fails.
If say, we were in Italy, and Sophie’s Omnipod system failed or was lost, she can’t just ‘make-do’ until we get back to Bristol in a few days or even a few hours. We would immediately need to revert to insulin injections up to 5-6 times a day.
Quite simply, she cannot live without insulin.

So we will have many back-ups packed every time we head out on a trip. The Poulins cannot pack lightly!!! Nope, not anymore!
Dexcom sensors, Omnipods, insulin, emergency sugar treatments, glucometer, ketone meter, glucagon, insulin needles, as well as paraphernalia such as alcohol wipes, needle tips, glucometer strips, adhesives, etc. – – I expect our diabetes bag to be cumbersome, but more necessary than the clothing suitcases.

All this, on top of getting to a foreign country and needing to figure out carbohydrate counts in food. Do you know how to count carbs in a plate of Italian pasta? Or in a French pastry? How many carbs in a German sausage or Hungarian goulash?
This is where the internet will be our best friend. We’ve gotten good at estimating, and will have to get better. There are apps that have good approximations and we sort of pick a number based on a wing and a prayer. Sometimes we’re wrong – she might go high and need extra insulin (if it was at dinnertime, this can make for a very late night for us!). Sometimes she might go low and need a quick juice (or 2 or 3) to get to a healthy, steady level.
We’re really hoping to get better at the guesstimating and coasting while we travel.

And did I mention that physical activity also has a serious effect on blood sugar levels? Activity speeds up our metabolic pathways and makes blood glucose drop. For example, swimming makes her levels drop like a stone. Walking makes it drop slow and steadily. When travelling, we will always need to keep in mind what we’re planning to do after eating, in order to ensure she gets a correct insulin dose.

You may think all of this sounds like a lot, but I assure you, it’s only drop in the water. We’ve had days (weeks!) of diabetes education by nurses and doctors and as well we’ve been living with this for almost a year and we still feel like we don’t know enough. I’m only trying to give you a very, very, basic idea of what living with T1D entails. As I write this blog, I hope to teach the uninitiated as well as help other T1D parents out there living with it – maybe pondering a trip abroad with their kiddos and overwhelmed with the idea.

Diabetes can definitely be overwhelming at times. It may be hard to live with. It may be scary to think of going outside our comfort zone by moving to the other side of the world and travelling a lot…. But if living with chronic disease teaches us anything it’s that life is meant to be lived! Stop waiting for tomorrow, start appreciating your todays.

We may go crazy at times, but we’ve been given this amazing opportunity, and we plan to make full use of it! Our daughter may have type 1 diabetes, but she’s also going to have a broad view of this world. She’s going to have friends in every corner of the globe.

She’s going to know that diabetes will never hold her back.