Tag Archives: Conditions and Diseases

Legoland Florida

As well as our successful days at DIsney and our disappointing foray to Universal, Mike and I treated the children to a day out at Legoland Florida20140809_232045We are big fans of the Legoland Windsor resort and had a marvellous visit there last summer with our friends from the wonderful charity, FABED, so were excited to make a visit to the bigger and better (well it’s American so it had to be, right?) Floridian version.  This theme park is situated on the site of the old Cypress Gardens and has kept a relatively small portion of the original park at the centre of the new one.  It’s around a 45-minute drive from Disney and was easy enough to find once we were headed in the right direction.  The park was surprisingly empty upon our arrival and we headed straight to Guest Relations to see if we could get a disability access pass (or their equivalent) for M.  The pass was issued without question and Mike then asked about what allergy information they had available and how we could manage this during our visit. The very helpful guest relations staff member knew there was a hard copy somewhere of this information, but sadly couldn’t put her hands on whilst we were in the office.  No matter, she reassured us, it was all available online.  Great, I thought, I could hop onto their website using my tablet and work out where we could safely eat.  Ah no, Legoland Florida has no wi-fi available in the park, so it was actually impossible to see any of the information we had been advised to access.

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Need a car? What better than a Lego Ford!

Being seasoned travellers with M and G, of course, we had our trusty rucksack full of safe foods and reasoned that we could and would think on our feet when it came to lunchtime. My notes from our day trip record that it was “good, but not the well-oiled machine that WDW is”.  The queues were painfully slow and the service not massively efficient.  Their staff members appeared, for the most part, to not be terribly enthusiastic in their roles and I felt it would benefit from finding more customer service orientated staff.  Mike had to wait for nearly 30 minutes just to get to the front of the queue to ask whether they could accommodate food allergies at that particular food concession unit.  There was a copy of an allergy menu there, but we were disappointed to discover after ordering that the allergy-friendly “plain” burger was served with cheese!

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We each picked our ride of choice from the map and started heading our way around the extensive grounds to make sure we made the most of our one day there.  Many of the rides were similar to those found in Windsor and the children had a great time revisiting some of their old favourites as well as trying out a few of the “new” ones.  20140809_222642We enjoyed the US version of Miniland although I was disappointed at how shabby many of the models appeared, especially as you could easily identify where elements were missing due to the telltale marks  and empty spaces on the surfaces.  Nevertheless, it was fun to see the likes of Las Vegas, Hollywood, the White House, San Francisco and New York depicted in lego.

 

20140809_210205Unfortunately the weather was somewhat inclement and so many of the rides closed for around an hour or so during the afternoon.  We took advantage of the opportunity and explored the original grounds of Cypress Gardens and stood in awe of the amazing Banyan tree that can be found there.  We were hoping to see the Pirates water show as M and G love the “Pirates of Skeleton Bay” in Windsor, but the threat of thunderstorms and lightening meant that the final performance was cancelled.  Despite all of this, we enjoyed our time there and had plenty to keep us all busy for the day.  I would say that Legoland Florida is worth a visit if you, or your children, are lego fans, but in my opinion, Legoland Windsor beats it hands down.

Marks out of 10:  6 – a good attempt, but the queuing system, park maintenance and food available let it down.

 

Not a Universal success

I wouldn’t blame you for thinking that we did nothing but Disney whilst on our hols, however we did venture to some of the other theme parks and attractions during our 2 week sojurn in Orlando.  G and M were particularly excited about the prospect of visiting Universal Studios, or more accurately, the “Wizarding World of Harry Potter“.  My enthusiasm was not so great, particularly given my poor experiences to date in trying to get hold of some, or indeed any, information about visiting the parks with my food-allergy duo.  I found the website difficult to navigate and the information available on it less than informative.  My first e-mail to them went unanswered and if it hadn’t been that both M and G were desperate to visit, I honestly think I might well have given up at that point.  However, I eventually tracked down a helpful customer services rep, who phoned me in the UK and discussed our needs at length.  She reassured me that they catered for food allergies and that we should encounter no problems when eating in the parks.  I was interested in booking the Character breakfast at La Bamba cafe so that the children could meet a Minion and once again I was assured that we could mix and match the breakfast options to get a meal that was safe for both G and M. Taking it on trust, I booked the breakfast and pencilled in 2 days at Universal on our somewhat hectic schedule.

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Mike imitating both Dave Minion and Gru at the character breakfast!

Our first day started well as we arrived in glorious sunshine and headed directly to Diagon Alley carrying a rucksack prudently packed to the gills with M-friendly snacks.  Our first view of Diagon Alley was impressive with a multitude of shops selling everything a young wizard could want as well as the fire-breathing dragon atop Gringotts Bank.  dragonWe headed into a nearby wand shop for both children to chose a wand to buy and then ventured off on a magical tour, following the map to find the location of spells for M to cast using his interactive Dumbledore wand.  I even dared to sample a pint of Butterbeer as requested by my dear friend, F, but have to confess it’ll be the first and last time I do that as the drink was just too sweet for any of the family to enjoy.  Disappointingly, as jaw-dropping as the “set” was, there really wasn’t enough to appeal to the younger age groups which we all found surprising.  Nearly all the rides, apart from the utterly amazing Hogwarts Express that carried us between the 2 halves of the Harry Potter experience, were roller-coasters or simulators that were just too big and scary for my nervous pair.

I was also disappointed by just how commercial it all felt, especially the “unique interactive experience” at Ollivanders shop in Hogsmeade, which promised far more than it delivered.  Just 2 children were selected from the crowd in the shop to participate in the amazing experience of finding out which wand was to be theirs; after all, as we all know “..the wand chooses the wizard…” (JK Rowling:  Harry Potter and the Philosopher’s Stone).  Not only was every other child in the audience disappointed not to be part of the action, but – call me a cynic – I don’t imagine many parents found it easy to then say no when their little darlings wanted to buy the wand that had chosen them in such dramatic fashion.

lunchtime

By lunchtime we had seen and experienced all that the Wizarding World had to offer and headed off in search of some food for our group.  We left Hogsmeade, where the food queues were out of the door, bypassed yet another hard-sell when the magic show we had been ushered into turned out to be little more than an opportunity to buy 4 tricks for the price of 2 and ended up at the street markets of the Lost Continent.  We stopped at what seemed a likely place as it sold hot dogs, something we had found was inevitably safe at all of the Disney parks and I queued to speak to what was possibly the most unhelpful server I have ever met and someone definitely not suited to a customer service role.  She gazed blankly at me when I asked for allergy information about their food options and struggled to understand even the simplest of requests:

“Could I please have 2 hot dogs without the bread-rolls as I have 2 children with multiple food allergies?”

“What?”

“Could I have 2 hot dogs without the buns?”

“You mean you don’t want the buns?”

“No, just the sausages…the meat”

“You don’t want the buns?”

“No”

“Just the dog?”

“Yes”

“But no bun?”

“No.  Just. The. Dog.”

“So, you don’t want the bun, just the dog?”

“Yes”

“Oh.  I’ll have to check with my manager if we can do that.”

Our exchange on whether I could get fruit or vegetables as an alternative side to the bun and the fries went in a similar vein.  I gave up any hope of intelligent discussion at that point and G and M ended up with a hot dog each – “just” the dog: no bun, no fries, no fruit and no veg, all for the princely sum of $15 plus taxes.  Yes, that’s right, £10 for 2 sausages that barely touched the sides going down.  Mike and my Mum picked out some safe looking bits of salad from their lunches, we bought a packet of crisps for G (another £2.50 there) and fed M from our own plentiful supplies, much of which had been got from Disney.

disappointmentI’d love to say our experience got better, but it really didn’t.  In “The Cat in the Hat” area, a place filled with lovely rides inspired by Dr Seuss books and enjoyed by us all, we came across a bakery selling the most amazing-looking cakes, biscuits and sweets guaranteed to tantalise the tastebuds.  Some of them were gluten-free, but none of the them catered for those with more complex allergies like G and M and we left empty-handed.  I had toyed with the idea of eating dinner in one of the restaurants at Citywalk, but again, of the 4 I had contacted ahead of our visit, only 1 came back to confirm they could probably cater for M’s food needs.  Maybe we’d been spoilt by our experiences in Disney, but Universal was a real disappointment and if it hadn’t been for our prepaid and booked Character breakfast for our second day there, I doubt we’d have bothered going back.

Raglan Road Irish Pub

1458655_800725413290492_2694048479460387307_nNaturally having asked G and M to name their favourite meal, I got to thinking about what my own number 1 would be.  I loved nearly every meal we ate at Disney and would have been more than happy to return to any of the restaurants to eat again.  The one that stands out in my mind however, has to be our fabulous dinner at the Raglan Road Irish Pub at Downtown Disney.  I had read great reviews about the pub before booking and I had contacted them back in February to find out whether they could cope with M’s food allergies.  Their response was to send me a complete allergy listing for all their menu options, so I had a good idea of what M and G would be able to order.  Unfortunately, our evening started on a slightly sticky note when I discovered that the allergy-friendly calamari that both G and M had been looking forward to trying was no longer available.

G's fish & chips

G’s fish & chips

M’s face dropped and he declared a disinterest in ordering anything off the menu, whilst G chose a traditional favourite of fish and chips.  Our server, Sheldon, was fantastic however and after a quick word with the chef, came back to M with an offer of shrimp cooked in their gluten-free batter accompanied by green beans, carrots and parsnips.  What impressed me most here was the offer of a side dish that wasn’t obvious from the menu, but one that our server knew and enjoyed himself and that he had checked could be made safe for M.  With that offer, M cheered up instantly and he and G disappeared off to watch the Irish dancing, whilst we soaked up the atmosphere accompanied with a pint of Magners cider.

M's shrimp & roasted veg

M’s shrimp & roasted veg

The food, when it came, was delicious and M not only made short work of his dinner, but set to helping G polish off the remains of her large portion of fish.  Main course done and we turned to the decision of pudding.  The options here were a little more limited that we’ve found elsewhere, but it was nice to have the “healthier” choice of fresh fruit drizzled with honey.  G is not a fan of fresh berries or melon, so whilst M was in heaven enjoying a bowl of mixed berries, that was the epitome of G’s idea of hell.  Once again Sheldon stepped to the fore and a bowl of apple pieces drizzled with honey appeared for her, which frankly made her day.

This is definitely a restaurant Mike and I would have loved to go back to and we were both disappointed that we just couldn’t find the time to squeeze a return trip into our busy schedule.  A great choice and yet again we experienced the wonderful service we have come to associate with Disneyworld.

The Triumph of Disneyworld

jamboWe were off to a great start, thanks to the fantastic Virgin team and the successful delivery of my on-line grocery order thanks to gardengrocer.com.  Not willing to leave anything to chance that first day, I had booked dinner at our hotel for the evening of arrival rather than facing the challenge of finding somewhere to feed M and G safely whilst struggling with jet-lag.  I had left it a little late to book and we ended up with a table in the delightful Jiko restaurant at  Jambo House, Disney’s Animal Kingdom Lodge.  Not my first choice for our first evening as  I was afraid we wouldn’t enjoy the delicious menu as much as we could when we were slightly less travel-weary, but needs must and I looked forward to seeing what exactly was on offer for M.

No words are going to be able to adequately express just how amazing that first meal at    Disney was.  I am so used to restaurants struggling to come up with a complete meal for M when we eat out in the UK, that I fully expected to encounter similar problems at WDW.  I couldn’t have been more wrong.  Our server knew about M and G’s allergies and quickly     requested that Chef Tom came to the table to discuss what he could prepare for their       dinner.  SAM_1906He was happy to cook any meat or fish that they wanted and suggested what sides could be safely offered too.  Despite not having sweet potatoes in the restaurant, he went to the other hotel restaurant to find out if their sweet potato fries would be safe for M or not and, when the answer was sadly no, prepared a beautiful dish of plain rice, seared scallops, carrots and green beans for him instead.  Both children enjoyed their meals and fell asleep at the table as soon as they had finished their main courses, before dessert became an issue.

excellenceWhat’s even better is that this experience was not a one-off.  As promised, every booking at Disney was annotated with their food allergies and as soon as we were seated, the serving staff were made aware that we would need to speak to the chef.  During our 2 weeks, G and M enjoyed breakfasts, lunches and dinners unlike any they’ve eaten out in the UK.  We tried a variety of restaurants across the 4 Disney parks and the numerous resort hotels and had equal success everywhere.  Even the counter service restaurants had allergy information to hand and managers who knew exactly what would be safe for both children to eat.  There was no skimping on meals and they were able to enjoy puddings almost everywhere too.

My thanks go to the fantastic staff at WDW – Chefs Tom, Renee, Ricardo, David, Dave, Duane & Brian and serving staff Jamal, Sheldon, Chris and David as well as the others whose names I forgot to note down

the brilliant restaurants – Jiko (Jambo House), Tusker House (Animal Kingdom), Coral Reef (Epcot), Cosmic Rays (Magic Kingdom), Mexico (Epcot), Fulton Crabhouse (Downtown Disney), Mara (Jambo House), Raglan Road Irish Pub (Downtown Disney), Citricios (Grand Floridian), Hoop-dee-doo (Wilderness Lodge), Backlot Express (Hollywood Studios), Fairfax Fare (Hollywood Studios), Crystal Palace (Magic Kingdom), Chef Mickeys (Contemporary Hotel), Sunshine Seasons (Epcot) and the many others we never got round to trying

and to Disney itself for the huge efforts it has made to welcome those with food allergies to its resorts and to make their stay as special as it can possibly be.

It truly is a magical place and one we will definitely be planning to revisit in the future.

Virgin Fantastic!

The time had finally come and the night before we flew, I sent tweets to both Virgin Holidays and Virgin Atlantic to issue my challenge to meet my holiday expectations and both accepted it immediately.

https://twitter.com/VirginHolidays/status/494057894611267585

First up was Virgin Holidays and their Gatwick V-room.  As I wrote back at the end of July, I had been promised a supply of rice milk for M as well as some suitable options for his breakfast and I was keen to see just what would be waiting when we got there.  Upon arrival, we met the fantastic Dominic, who knew all about M and our request for rice milk.  As soon as we found a table for breakfast, he brought the milk over and then spent some time discussing all of M’s allergies and what food they had on offer that might suit him.  I was impressed to learn that they stock B-free bread and although it contains egg and therefore isn’t suitable for M,  G snapped up the opportunity to have 2 slices of toast as part of her breakfast.  Both children also had some cereal with the rice milk and there was fresh fruit and smoothies available for them too.  I was hugely impressed with Dominic’s attitude throughout our time there and at no point felt that we were an inconvenience to any of the V-room staff.  Even better, we were able to take the remainder of the carton onto our flight with us, which meant we could go on our holiday knowing M had a limited supply of safe milk to hand.

It was then on to our plane and it all started well.  The check-in staff had confirmed that the special request meal had been noted on our booking and the cabin crew provided us with a ready supply of ice to keep the cool-bag of medicines cold for the 9+hours we’d be in the air.  I was equally impressed that they offered to place our ice packs in their on-board freezer to ensure that we could keep everything cool until we reached our final destination in Orlando.  Eventually it was time for the meal and here we hit our first rocky point. oops I had requested a gluten-free meal for G which quickly turned up, but there was no sign of the requested meal for M.  The cabin crew searched high and low for it, but couldn’t find it and we were left with the option of whatever fruit they could get their hands on plus the snacks I had packed to keep M’s appetite filled.  Just as I was mentally drafting a letter of complaint to Virgin Atlantic expressing my disappointment at being let down in such dramatic fashion, our air stewardess hurried up with a tray of food and an apology on her lips.  The confusion had arisen for 2 reasons: 1) the meal had been prepared with G’s name on it rather than M’s and 2) it had been assigned to the seat number of another passenger who had also requested a special meal and the names had not been cross-checked to make sure everything was right.

Disaster was averted, but only just.  The meal prepared was exactly what I had asked for – plain grilled chicken with rice and vegetables and a fantastic fresh fruit salad for dessert – and M tucked in with gusto.  We were lucky that the other passenger had not started eating the meal before the mistake was identified and I’m glad to say that our return flight was not plagued with the same problem, although it still appeared that G had 2 meals (both the gluten-free and special request meals being assigned to her name), whilst M had none!  I hadn’t considered that a smaller snack would also be provided on the flight and was delighted Virgin Atlantic had thought further ahead than I had and provided another delicous fresh fruit platter for M to enjoy safely.

Gold stars all round!

Gold stars all round!

I have been really impressed with how well both branches of the Virgin family accommodated our needs and requests on the flights and wouldn’t hesitate to recommend them to anyone going on holiday with special medical needs.  We didn’t run into any unexpected problems with our travel arrangements and I will definitely consider travelling with them again.

 

 

 

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!

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!