Last minute checks

Courtesy of bbc.co.uk

Courtesy of bbc.co.uk

With the countdown started and just days to go, it’s all come down to those last minute checks and the final packing for our holidays.  I am the queen of lists when it comes to going on holiday, especially when travelling with M and G and this year was no exception, though I have to confess that four pages of lists is a whole new record! The clothes were quickly sorted and I got to my main challenge: the suitcase of M-friendly foods and all his medicines.

My biggest concern was ensuring we have enough safe snacks with us for at least a few days as I’m not certain about what will be easily available once we get to the “House of the Mouse”.  I don’t want to over-cater as I have no intention of bringing a suitcase of food back home with us, but I did need to be reassured that M would have enough to eat.  I spoke to our lovely GOSH dietitian to seek her advice about the availability of free-from foods in the USA and she advised consulting the UK Coeliac Society website as a starting point as to where we might be able to buy them.

onlineshopI also did some on-line research and discovered that an option I hadn’t even considered might be a great place to start – an on-line grocery shop.  This is still a fairly new phenomenon in North America as I know from our Canadian family and friends, but I found that I could arrange for a food order to be delivered directly to our hotel on the day of our arrival,  which would instantly reduce the need for Mike and me to find a supermarket straight away.  I investigated a couple of options and settled on the Garden Grocer delivery service. This is not affiliated to one particular supermarket chain and for a little extra cost, they will visit more than one shop to find everything you need.

The website is not as slick as the ones I’m used to using at home – I am a big advocate of on-line grocery shopping as it saves so much time – but I have been able to find most things I think we’ll need whilst away.  There was a much better selection of M-friendly cookies and cereal bars than in the UK and at a much better price too.  As I’ve said before,  it’s hard to be both frugal and allergy-friendly in the UK.  Shop done and delivery slot booked, all I can do now is sit back and wait with my fingers tightly crossed.

Eating out on holiday

allergymenuOne of my anxieties about travelling abroad with M surrounds the prospect of feeding him safely whilst away from home.  The long list of foods we now need to avoid make it challenging enough to go out for meals when at home and we inevitably have to make a small compromise somewhere along the line, with our fingers tightly crossed that the fall-out isn’t too major.  Whilst we often choose to holiday somewhere where we can either cook or eat out, a holiday spent cooking is not really my idea of a break.  This time around, however, we decided to avoid any form of self-catering and so I gave myself the job of finding safe places for us to eat.

Now, I can’t speak for all the WDW resorts around the world, but I can wax lyrical about the Walt Disney World resort in Florida.  My starting point was at the WDW website, where I discovered that the resort is keen to meet any special dietary needs that its guests might have and encourages visitors to book ahead and let the restaurants know what foods they need to avoid.  I gave them a call and chatted through M’s food requirements and was reassured that, as soon as I knew where we wanted to eat, then they could append a note to our booking to state all of M’s current food allergies.  Mike and I spent hours reading restaurant menus and looking for reviews of the allergy-friendly offerings that are available. I discovered the brilliant blog, Gluten Free & Dairy Free at WDW and soon became very excited about what we might be able to get for M to enjoy.

WDWThe 180-day mark arrived, the point at which we could start to make ADRs (Advance Dinner Reservations for the uninitiated amongst you) and I hopped on-line to make as many of the bookings we had chosen as possible.  The system was delightfully easy to use and I was able to make note of all our dietary needs without hassle.  One of the many experiences we wanted to treat the children to was a dinner show, something we hadn’t enjoyed since our last Disneyland Paris trip, pre-diagnosis and multiple food allergies.  We’d settled on the Hoop-de-doo musical review, but I was anxious to confirm that they could cope with M’s allergies as this is a set menu and there were several things on it that he just can’t eat. Rather than risking confusion through an on-line reservation, I called the WDW call centre and spoke to a lovely lady who was amazingly helpful.  She made a note of the allergies and reassured me that there would be no problem in meeting these needs at the dinner show.

Booking made, she then also checked all of our other reservations to confirm that my notes were clear and talked me through the process of ensuring that M eats safely at any and all of the WDW restaurants.  Upon arrival, we should find that the table will have some kind of allergy marker on it to make it clear to all waiting and serving staff that we have special dietary needs.  The chef will then come out to talk through what is and isn’t safe on the menu, point out any safe foods at the buffet (if relevant) and finally will discuss whether we would prefer them to prepare something fresh and. if necessary, off menu to give us all the most reassurance about what M and G will be eating.

mickeywafflesAt no point did I feel that my questions and requirements were a problem and I felt 100% reassured that WDW would be working hard to make sure that M and G have the best holiday food experience whilst we’re there.  M is looking forward to being able to eat “proper” burgers, something he hasn’t been able to enjoy away from home for an awfully long time, whilst G is just keen to try any gluten- and dairy-free desserts that might be on offer.  Mike and I are most excited about seeing their faces at our first breakfast, when we will be able to order them a plate each of Mickey waffles, something that they both love the idea of, but have never been able to order before.

To ID or not to ID

With our holiday fast approaching, I’ve been considering whether M needs some form of medical ID to carry on him.  The concept isn’t a new one to me as I’ve had a Medic Alert bracelet for years for my T1D and regularly make sure the information held on file for me is up-to-date.  I’ve not previously felt it necessary to have such a band for M, but with his diagnosis of EGID and an increasing number of medicines and allergies to consider, I finally bit the bullet and decided to investigate what was on the market.  Part of the impetus to my search was seeing one of M’s school friends sporting one at our recent local music festival for his T1D and realising that this would be hugely important for those occasions when M is out and about without me or Mike on hand to explain.

medicalert

Whilst my Medic Alert bracelet works well for me, the biggest problem would inevitably be the amount of information needed for M and I felt that it just wouldn’t accommodate it all.  I needed something that would appeal enough to M for him to be willing to wear it all the time as well as having enough room for me to note his name, DOB, emergency contacts, EGID, 12 medicines and 8 food allergies.  No small feat, but – and I doubt this will come as much of a surprise – there is something out there that does all this with ease.

20140803_200524The wonderful ID Band company has a range I couldn’t fail to be impressed by.  From bracelets to necklaces, sports bands to medical bags and the all important kids range, plus a whole host of “spares”, some of which you wouldn’t have even thought of until the moment you need them, there is pretty much everything you could conceivably want.  As well as the more traditional metal panels that you can get engraved with the exact wording you want, they also offer the product I was looking for – a wristband containing a card ID that you can personalise as necessary and the whole band is completely waterproof.  Cautious as ever, I browsed the site to check there was nothing better available, but kept coming back to this one band in particular.  The card ID was big enough to take all of M’s details, I could buy extra cards for when things change and the sizing was ideal for M’s small wrists.  Even better I could get it in green camo, just the thing to appeal to my small boy.

20140803_200443I placed the order on a Thursday afternoon, with my fingers crossed that it would arrive in time for our holiday and to my astonishment, the parcel dropped through our door the very next day.  I filled the information out and presented it to M, hoping that he would be keen to give it a whirl and not reject it out of sight.  I needn’t have worried – M was desperate to try it on straight away and has been more than happy to wear to his holiday club this week.  Once again, a massive double thumbs up from both children (well G wanted one too to state her allergies) and a hearty recommendation from this very satisfied Mum.

Hay fever

dandelionEvery year I’ve had to cope with Mike’s relentless sneezing and G’s sniffles that signal the start of summer in our household.  I’ve never experienced hay fever (also known as allergic rhinitis) and have to confess to being more than a little fed up with the constant coughing, endless nose-blowing and general spluttering that would accompany every summer day spent outside with my family.  Given the rest of M’s allergies, it was something of a surprise that he’d never suffered with hay fever, but definitely a good one.  Naturally, that equilibrium couldn’t carry on and this year he crashed into the world of hay fever with style.

It all started with yet another bout of croup.  M struggles with croup 2 or 3 times each winter and has done since he was tiny.  We were always told he would “grow out of it” in time, but by the time he’d hit 5 and was still suffering, I began to doubt that it would be something we’d be saying goodbye to any time soon.  Last year I read an interesting medical article about “allergic or spasmodic croup“, which is caused by an allergic reaction to substances such as pollen as well as by acid reflux.  It wasn’t relevant to us at the time of reading, but I filed it away in the back of my mind to be mused on at a future point.  This point came after Mike and the children had been away for the annual Dads and Kids camping weekend and M was coughing that oh-so-distinct seal-like bark, which I remembered had developed at the exact same time last year.  I wasn’t sure what had caused the croup to develop, but the coincidence of timing and the memory of that article made me wonder if we were seeing some sort of allergic reaction manifesting itself in M.

stethoscopeWe popped along to see one of our lovely local GPs and put the question of M’s croup to her.  I wanted to be certain there was no underlying infection that needed to be dealt with and was keen to see what she thought it was.  She listened to M’s chest, heard his cough, took his temperature and reassured me that there was nothing untoward going on. Her opinion was that he was suffering from hay fever (tick to the allergic reaction to pollen) and the croup was being caused by post-nasal drip.  She suggested that we’d not seen many signs of hay fever in M before because he regularly takes antihistamines to help manage his EGID, but this year’s particularly high pollen count was too much for those medicines to manage.

M received yet another prescription, this time for a nasal spray to help with the hay fever and I have to say that within days of taking it, his croup cleared up and has yet to return.  So, M appears to have joined the ranks of hay fever sufferers in the family and I’m happy remaining the odd one out on this occasion!

60 birthday wishes!

My Uncle's amazing cake - and delicious too

My Uncle’s amazing cake – and delicious too

This time last year I discovered the recipe for the best chocolate cake in the world and all in the name of baking an amazing cake for my Uncle’s birthday.  This year I was given the weekend off as my Aunt arranged for an old friend, who is also a fantastic cake decorator, to bake the birthday boy a special cake.  However, I couldn’t let my uncle’s extra-special birthday pass without preparing some sort of treat for the whole family to enjoy together, so I instead decided to revisit an old favourite, egg-free meringues.

My original thought had been to use the meringues plus a great new product I’ve discovered to make a M-friendly Eton Mess dessert.  I read about Soyatoo! Rice Whip on the fantastic Lucy’s Friendly Foods blog and had immediately ordered both the rice and coconut whipping cream to keep at home.  I’m always looking for easy alternatives to use for desserts other than just cakes or biscuits and the rice whip fitted the bill.  A couple of weekends ago, I had whipped it to serve with some home-made apple and blackberry crumble and both children had cleared their bowls – a sure sign of a big culinary success.

However, inspired by the prospect of the new Great British Baker series starting next week, I thought I’d give a nod to macarons instead.  I didn’t venture into completely new territory by attempting to add ground almonds to the mix (that’s for another day), but did colour my meringue mixture before baking and paired them into sandwiches for serving.  I made flavoured buttercream icings to sandwich my meringues together and used M and G as taste-testers for the final product.  I had mixed success.  The yellow and pink meringues turned out beautifully, but the orange ones were an unmitigated disaster and ended up in the bin.  I made lemon and strawberry flavoured icing, filled the meringues and served the “macarons” in a dish. I would love to show you how they looked, but I forgot to take a “before” photo and this is all that’s left for the “after” one!

A single, solitary strawberry macaron left

A single, solitary strawberry macaron left

HAPPY 60th BIRTHDAY UNCLE R!

Delicious date and ginger cake

I hadn’t been planning on yet another bake, but I remembered at the last minute that the children needed cake for the following afternoon at their holiday club.  Once again I needed to work with whatever was hiding in the cupboards and although G was keen for me to make my chocolate cake, I wanted to head in a new direction.  We’ve only just finished the frozen chocolate cupcakes leftover from our fundraising at the end of May, so I relished the idea of something different.  I’d recently bought a packet of dates and decided to investigate a date and ginger concoction instead.

SAM_1364I couldn’t find a good allergy-friendly recipe to use, but settled on this recipe and adapted it to make it M-friendly.  These days I try to find recipes that have not only already done some of the work for me, be they gluten-free, vegan or otherwise allergy-friendly, but that also look relatively easy to bake.  Fortunately, given my ever-growing experience in the kitchen, I was able to work out my substitutes fairly quickly and, once the children were in bed, started in the kitchen.  My biggest challenge to date then faced me.  My electronic scales had given up the ghost – I’m guessing the repeated falling out of the cupboard really hadn’t helped – and I had to revert to using my Nigella cups for measuring the ingredients instead.  I’ve never baked using just cup measurements before as I usually convert them into grams and millilitres, but needs must and all, so I rolled up my sleeves and got on with it.

20140728_223632I needn’t have worried as the final cake was delicious, though perhaps a little overdone from 5 minutes too long in the oven.  The ginger was a bit strong, though M insists that won’t hinder him eating the cake.  G is less sure, but is happy to eat it in small pieces and certainly didn’t refuse the slice offered to her for holiday club.

Holiday planning

countdownIt’s that time of year when months, weeks or maybe just days of frantic planning come to fruition and families across the UK enjoy a week or two away from it all.  Whether it’s time in the sun, travels to far-flung shores or even just a few days experiencing something new in the UK, most of us wouldn’t think much beyond making travel arrangements, booking somewhere to lay our heads and throwing the essentials into a bag.  For years my saving grace was the thought that, insulin aside, if I had forgotten anything else even vaguely important, as long as we had money, we could pop to the shops to find a replacement.

Once you have children with chronic illnesses or food allergies, everything suddenly becomes that tiny bit more difficult.  No longer can you risk forgetting any part of the equipment or medicines you need to get your child through each day.  No longer can you assume that you will be able to get hold of the gluten-, dairy- or any other allergen-free food that your child needs to remain healthy.  And you have to consider what you would do if any one of your “what if” worst case scenarios was to actually happen.  With all of these things to complicate what should be a fun and relaxing time away from home, it’s no wonder that many families living with chronic illness choose to holiday at home, or within reasonable spitting distance, so that many of those concerns are alleviated.

Whether you consider it courageous or complete and utter madness, we’ve never been a family to stay close to home.  Mike and I both love travelling and have chosen to nuture a similar passion and willingness to explore the unknown in our children.  Part of that has no doubt been fuelled by our want to go back to Canada regularly to visit family and friends and over the last couple of years we’ve developed strategies to help us cope with travelling with M.  I carry doctors letters and copy prescriptions for both M and me in with our passports and last year discovered that we’re entitled to ask for additional luggage allowance to carry all of M’s medicines and foods with us free of charge.

walt-disney-mickey-mouseWith all this in mind, and our plans for this year’s holiday well under way, I contacted our travel company and airline to discuss our needs.  This year is our “holiday of a lifetime” as we are going to Florida to enjoy all things Disney and Universal before spending a relaxing week on the beach in St Petersburg and I want it to be as straightforward as it possibly can be given the challenges of EGID and multiple food allergies.  Planning for this trip started months ago and I had drawn up a list of things I wanted to find out to make our holiday as stress-free as possible.  My first set of questions was all to do with our flight out and I contacted the Virgin Atlantic Special Assistance team to talk over our needs.  I was quickly reassured that, as before, we could carry all of M’s medicines and foods in an extra suitcase and was advised to make sure I had copy prescriptions and doctors letters with me to make our security experience as smooth as possible.  They’ve also added a note to M’s booking to make it clear to all staff that we are entitled to carry extra luggage free of charge for medical reasons.  A big tick there that there will be no problems carrying M’s medical supplies.

Next the small matter of M’s in-flight meal.  I couldn’t imagine that any of the special meals on offer were going to avoid the wide range of allergens we needed them to, but again the Special Assistance team were able to help.  I sent an email with a full list of the foods M can’t eat and then followed it up with a phone-call.  The lady I spoke to agreed that it would be difficult to accommodate him with their standard meals, but asked what, if anything, would suit him.

Plain chicken and rice,” said I, “with no butter or sauces added and a few vegetables on the side.”

Leave it with me,” she said.

A couple of hours later an email popped into my inbox.  “I’ve spoken to the catering staff and they will make plain chicken and rice as requested for M for the flight.  I’ve passed on a complete list of his allergies for their reference, so please let us know if anything changes between now and your flight.  I’ve added all this information to your booking.”  I was amazed at just how easy adapting a meal to suit M was, but because I’m something of a worrier, I gave VA a quick call last week to confirm everything was okay for the meals.  “Yes absolutely.” said the man I spoke to this time round.  “I can see this meal marked on M’s booking and this list of foods to avoid.  Is that all correct?”  They’d even had the sense to annotate the return flight too, so I can be confident that M will be eating something safe in both directions.  They also suggested we carry a supply of safe snacks in our hand luggage (another extra bag could be carried free of charge if it was necessary), so that M won’t go hungry during the flights.

vroom_header_tcm4-588081The final element was our booking in the V-room airport lounge before we make our flight.  A complete breakfast menu is available to us, but scanning my eyes down the list of food, I could see that there was little on there that would be safe for either child, though G had a few more options than M.  This time I contacted Virgin Holidays as they run the airport lounges and asked what our options were.  I was given a list of foods that are M-friendly and advised to ask to speak to the chef when we arrive at the lounge to discuss what M would like for his breakfast.  They stock gluten-free foods as a matter of course and whilst they had soya milk as an alternative for dairy, this wouldn’t suit M.  Once again I was told that this wasn’t a problem and was hugely impressed to receive a follow-up email telling me that the chef of the V-room had contacted their suppliers and would get in some rice milk just for M on the day of our flight.  What more could an allergy-Mummy ask for?

fingerscrossed

Of course, there are no guarantees that any of this will work out as planned and I am cautious enough to be taking supplies sufficient to meet our needs as we make the trip to the US.  I will, naturally, let you all know how it goes once we’ve made our flight!