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Going on Holiday with the Ketogenic Diet

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Organisation and preparation – those are the key words here – but it can be done and you can have a good time!

Holidaying at Home

If holidaying in this country then things are obviously a little more simple, but self-catering definitely seems to be the favourite, although if you are staying at a hotel, it is worth ringing them and seeing how much help they can provide you with in so far as storing foods for you.  Some hotels can be very helpful, so have a chat with them.

Holiday insurance – it is still worth getting even if you are staying somewhere in this country.  With our children the unexpected can happen, so it is worth having some sort of cover in case of any last minute problems.

I tried several companies, some wouldn’t touch us with a barge pole (I will not even start on my response to them for THAT one!) Direct Line turned out to be the most helpful for us and was quite happy to provide insurance.  You may know of others – if any companies were very helpful then let us know and we can recommend them to other parents.

Going Abroad

As far as going abroad is concerned, I can only advise you that you will need a letter from your doctor for customs purposes as you will be taking foodstuffs with you and also check out the food values in the country you are visiting for your basic items.  Some countries call their cream ‘extra thick whipping’ or double cream – when in fact they can be equivalent to our single cream – therefore the food values will be different – You MUST speak to your dietician about this and they should be able to help you.

That is all I can tell you about going abroad – I have never done it with my Matthew (yet) – but I know a lady who has……..

Nicola is mum to 7-year-old Matthew (great name!) and they have recently come back from a holiday to Trinidad and Tobago.  She has very kindly shared her experiences with us and is in a far better position to give you suggestions to make your life easier than I am.

Many thanks to Nicola for her help and for sharing her experience, I will now hand you over to her…

Our Trip!

Matthew was 7 years old and on a dairy free version of the MCT Ketogenic diet. This is our story of our trip to Trinidad and Tobago.

Advance Preparation:

Firstly we got travel insurance. The company wanted to know his medication and frequency of hospital visits, otherwise it was no problem and no extra charges to insure Matthew despite his epilepsy.
We informed the airline that Matthew was on a special diet and we would bring his specially prepared foods.
We got a signed letter from the hospital (Great Ormond Street) stating Matthews’s type of epilepsy, treatment and the fact that we needed to carry specially prepared meals and foodstuffs.
We also got a copy of Matthews prescription from the local GP for his liquigen and other medication. This is not essential, we just wanted to take every precaution.
Next we thought about what we would be feeding Matthew for our 2 week holiday and consulted the dietician regarding food values and amounts, e.g. paw paw, pineapple, lobster, different types of fish etc.

Shopping Essentials:

A cool bag is essential/hamper. I like the cool bag because we could fold it up when not in use.
"Lock- lock" containers are a lifesaver; you can tip anything or drop any food or liquid with no leaks or problems. I got mine from Lakeland.
Decent light scales (sorry, but the expensive ones are better), keep the box, the Styrofoam is useful when packing to travel.

Personal Tips:

Laminate the diet sheets and carry spare copies!
For those on the MCT version, carry a spare emergency liquigen drink in case one gets knocked over!
Ask for seats with more space such as bulkhead seats, easier access to the hamper then.
We packed meals for 2 days for a 10 hour flight. This takes delays into account and less panic and hassle on arrival, as a meal is already prepared.

Where to stay:

MUST HAVE ACCESS TO A KITCHEN. We stayed in a villa for a week, perfect, nice kitchen, microwave and fridge. Then we stayed with mum for 4 days, sharing a kitchen was harder. We then stayed in a hotel, this only worked because we had a fridge and had previously prepared meals.

Conclusion – Self-catering worked best for us with the keto diet, although the kids liked filling the hotel Jacuzzi with bubble bath!

Any unexpected problems:

The kids’ meals on the plane for Matthews siblings were bangers and mash (sausage and mashed potatoes to those Stateside!), Matthew was totally jealous and had a corker of a tantrum.

The flight was delayed by 8 hours! Fortunately we had enough keto meals but being stuck in an airport that long was expensive, so carry some games and toys. Matthew gets very tired so we asked for a wheelchair; he slept for hours as soon as we put him in it.

Matt had a seizure in Tobago and fell and cut his temple, it was stitched at the local casualty after a long wait and lots of extra myoclonics but the staff were friendly and the hospital was spotless albeit very old fashioned.

Was it worth the trip?

Yes, yes, yes. We relaxed, Matts seizures decreased and we continued the drug wean in a less stressful environment.  So plan carefully and enjoy your holidays


Greg's Ski-ing Trip


Yes Greg went skiing for a whole week with school!

When I received a phone call from Gregs school NCYPE, offering Greg a place on a ski trip to Italy, my first words were “YEEEESSSS!” Closely followed by a sinking feeling and “but he’s on the ketogenic diet?!”

Luckily, NCYPE have a “Top” carer by the name of Tom.

Tom was determined that it could be done, and what impressed me most was the fact that although he had managed other kids on the diet, he wanted to know everything!

I decided it would be best for me to cook all the main meals and snacks to send with him, so, preparation began weeks before, my freezer very soon resembled an Indian takeaway, chocker full with foil trays! With instructions written on top, like add 9g mayonnaise!

All we needed to do was get the food to the hotel in Italy, still frozen! After a 24hr coach trip agghhh!!!!

Tom and I went away to find out what the alternatives were, and were very excited to come back with the same answer, DRY ICE!

Our local freezer food chap let me have a huge polystyrene box to pack all the meals in. On the morning of the trip we took the box to a dry ice company near Heathrow, they were brilliant packed the ice all round the food and gave us the confidence that the food would actually still be frozen by the time the coach got to Italy!

There are guidelines about ventilation when transporting Dry ice, also allowing temp of food to increase before putting food into a freezer at the other end. So make sure you are given this information from the company before using dry ice!

Well that was most of the food taken care of…..

Then came the cool box, containing, scales, Liquigen, food for breakfast, as that would need to be weighed out each morning. A spare cake meal in one, in case they were delayed.( I also included a cake meal in the frozen box for on the return journey). Also a selection of menu`s in case the food defrosted on the way!!

Cool bag three contained picnic type meals and snacks for the journey, no problem!

The food arrived safe and sound as did all the kids and Greg for one had a fantastic time, he did so well, Tom said he hopes he will be able to go again next year!!

I was a bit worried about the amount of calories Greg would need on the days that he Skied, so we made a plan, Tom was happy to check blood ketones, He checked them at night, if ketones were less than 2.5mmols he gave extra cream in the night drink.

Greg did have a few seizures, but nothing out of the ordinary, they certainly didn't stop him having a brilliant time.

Mum to Greg 11 MCT ketogenic diet since Feb 04



Holidaying in Florida


The following tips were kindly provided by Kate, one of our regional co-ordinators and a Disney expert!

All of the 'full service' restaurants are fantastic. All restaurants have the option of salmon or chicken even if they are not on the menu.  you do need to book meals in the restaurants though as they get very busy and it's nigh on impossible to get a table.  When booking the table you need to ask them to put an allergy request on the booking.  When you arrive at the restaurant for the meal, you need to request to speak to a diet chef and they will sort out what you need. 

EKM is fantastic so you can make a meal of what they've got!  I would probably suggest you could do some sample menus based on things that are easily got hold of in the restaurants..... steak is easily got hold of in restaurants, as is chicken and salmon.  broccoli and broccolini seem to be a popular vegetable over there, as well as carrots.  I'm not sure about double cream, it is called heavy cream or whipping cream I think, but I don't know if it has the same CHO content as our cream and the US calculate it differently i think! 

In the Disney theme parks, all of them sell smoked turkey legs from carts, which prove really useful.  there is also a counter service (fast food) place in the animal kingdom that sells BBQ chicken and ribs.  It's called flame tree BBQ.  there is also a good counter service restaurant in the magic kingdom called "Cosmic Ray's". They generally sell burgers, chicken, salads, sandwiches. but they will cook a chicken fillet specially - you need to find a greeter (they walk around the restaurant wearing an earpiece) explain to them what you need and they will take you through the queue, help the server put it through the queue and then speak to the diet chef to make sure it is completed correctly.

I'm not so sure on I Drive restaurant as as we tend to stay in a Disney World Hotel as we know we can rely on them. there are all you can eat restaurants with buffets called Ponderosa Steakhouse and Sizzler.  Breakfast is about $3.99 for all you can eat.  They are massive meals! Armed with scales I think it would be possible to make a great keto brekkie...they generally have bacon, scrambled eggs (you can request they cook you some seperate so you know what's in it), sausages (but they might be difficult to calculate), fresh fruit. lots of other things, but those are the things i can think of that are keto friendly.  some even have ice cream!!!

I hope this info has been of some use to you and you have a lovely time!


YOU MUST consult your own medical Keto Team before making ANY changes to your childs treatment,
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