Author Archives: bluesingingdragon

About bluesingingdragon

Mum to an EGID son and a food allergy daughter. Full-time accountant and supporter of Over The Wall.

London: our whistle-stop tour

With our appointment at GOSH over, we then focussed our attention on the activities we’d chosen for the rest of our London stay. We had narrowed down our choices from the lengthy starting point created by G and M and suggested that each child chose 1 activity each that they really wanted to do on this trip: be that museum, park, art gallery or tourist attraction. G quickly settled on the Imperial War Museum, M picked the London Eye and Mike and I agreed on booking tickets for a show as well as attempting to complete the amazing “Shaun in the City” sculpture trail. It was, without question, an ambitious plan, but with some careful planning and the agreement of both children that the amount of walking required would far outweigh the maximum moaning I was prepared to accept, I was confident we might just be able to squeeze it all in.

Imperial War Museum

This has been on our “hit list” for quite some time, but our previous 2 attempts to visit had both been scuppered by an extended closure to prepare the exhibits marking the centenary of the start of WWI last year. With nothing to stop our visit this time, we travelled across London via tube and finally convinced our pair to head inside after the requisite ~~hundreds~~ tens of photos had been taken of the impressive naval guns at the front entrance. G was keen to work her way through the WWI exhibits, whilst M had a yearning for learning more about being a spy and Mike was intent on seeing the Holocaust display. I had allowed a full day for our visit and we certainly needed it. There was an incredible mix of posters, photos, short films, interactive displays, war memorabilia and oodles of facts to work our way through and the children were able to dip in and out of the information as they wanted. We lasted until mid-afternoon before G and M started to flag, interest was lost and we made our way back to the apartment for a little downtime before we headed out for dinner.

The Railway Children – near Waterloo Station

In the run up to our visit, M had spotted an advert for “The Railway Children” and was keen to see the show. As this was a perfect opportunity to watch a play, rather than the musicals or pantomimes we usually attend, we agreed to get some tickets and had great seats near to the front of the seating area. M and G loved that the characters came out to talk to the audience before the play started and were enthralled throughout. I won’t spoil the experience – but it does include a real steam train and the most amazing staging I’ve seen in a long time – and would definitely recommend going to see this fabulous classic if you have the chance.

London Eye

This has quickly become an instantly recognisable icon on the London skyline and is actually something the family has done before. Every time we head to GOSH for an appointment, M begs for a trip on the Eye and every time I say no, not least because it’s actually nowhere near the hospital and our regular visits are almost always somewhat tight on time. Having given them free rein to choose one thing they each really wanted to do, it was no surprise that this was M’s selection. The 30-minute revolution offers spectacular views across London and both children were fascinated with trying to pick out various buildings they knew from the pod. I was also impressed with the thoughtfulness of the member of staff directing people into the waiting lines. You can easily end up queuing for around 20-30 minutes, which is never ideal when you have children in tow and definitely not when one of them is sporting a litre feeding bottle and pump on his back. This lovely lady spotted us in the queue with M and invited us to enter via the fast-track system instead, stating it was “.,just too chilly..” to be standing around waiting. Of course we all realised that M and his tube were the real reason behind her kind offer, but appreciated her not making a fuss about it and simply offering us an alternative that would make life a lot easier and our experience a lot more fun.

Shaun in the City sculpture trail

Just one of the many Shauns we found

Yet another sculpture trail to echo a multitude that have been seen across the UK over the past few years, including the Paddington Bear one we dipped into whilst visiting the poppies at the Tower of London last November. This year’s trail was based on Nick Park’s popular character, “Shaun the Sheep” and featured 50 sculptures, each individually decorated by a host of celebrities, found at strategic locations around the capital. The sculptures were split into 5 groups – 4 distinct trails and then 5 “lost sheep”, who were not particularly close to any of the other ones – and most were close enough together to allow us to attempt to find nearly 40 of them in one day. G and M’s aim was to find and be photographed with all 50 before our trip was over and we managed it, though with very little time to spare before we needed to catch our train home. These London sculptures are only in place until 25th May and then there will be 70 Bristol counterparts during July and August. Later in 2015, all 120 will be auctioned to raise much-needed funds for children’s hospitals across the UK through Wallace and Gromit’s Children’s charity. We loved following the map before finding ourselves in parts of London we wouldn’t normally visit and there’s a real camaraderie between fellow Shaun-spotters you come across along the way. You can find out more about the “Shaun in the City” trail here.

Stomp – Ambassadors Theatre

Courtesy of http://www.ticketmaster.com

Our final treat was unplanned, but was definitely a winner. Every time we travel up, or down, the escalators at tube stations, G and M love to look at the advertising posters that adorn the walls. If you ever hear cries of “Seen that one…and that one…but we haven’t seen that,..yet!“, then it’s a fairly safe bet that we are somewhere in the vicinity. Stomp is one of those productions that they’ve been longing to see for quite some time, but we’ve been reluctant to go because G, in particular, doesn’t cope well with loud noises. Our search for Shaun led us into Leicester Square and the hordes of theatre ticket booths that can be found there. For those not in the know, these sell last-minute tickets for many of the numerous shows being performed in London at any given time and often represent great value for money due to the discounts they give. We decided to see if we could get some discounted seats for Stomp and were delighted to have the choice of 4 prime seats on the second row of the circle. The children were a little shocked to learn that there was no interval in the performance, but were even more surprised at how quickly that 1.5 hours passed notably as they were left wanting more. The skill of the performers is phenomenal, especially when you realise that you hear no words and no music for the duration of the show, but are totally absorbed by the percussive masterpieces they produce. Another fantastic show that we’d highly recommend.

We even managed a trek across Tower Bridge on our travels

So, it was definitely something of a whistle-stop tour of the capital for us this April, but a great break that we won’t forget for a while.

Because #livinginfear is not just about the allergies

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I wrote yesterday about the #livinginfear campaign and started thinking about what that really means to me. I quickly realised that #livinginfear is not what I want for M or, indeed, for G. It is so important that they are both aware of their allergies and that M, in particular, could suffer adverse reactions to the foods he eats. They must take on responsibility for their own health when away from home and have an understanding about what they eat and what they have to avoid. They need to know how to deal with mild reactions and how to communicate their needs to the people around them, especially when in new situations, or when Mike and I are not there to speak up on their behalf. After our experience with the sweet potato trials, they now know that there could be other, more serious reactions that M’s not experienced before and that they could be frightening. Most critically, I need to teach them how to respond calmly should those reactions occur.

However, the most important thing is this: that my children are still children and whilst living with a chronic illness has forced them both to grow up a little faster than their friends and peers, I don’t want them shouldering adult worries or concerns, or feeling weighed down with fears that may never be realised. Until the point when they reach their majority, I want my children to laugh, play and simply live each day as children, trusting that Mike and I will always be there supporting them, ready to catch them when they fall.

The truth about #livinginfear for us is that it is my burden to bear and is about more that just the potential for serious allergic reactions. My fear is not even about M possibly suffering from anaphylaxis one day as, although the prospect of facing that is daunting, I trust that my parental instincts and ability to stay calm under pressure would get me through that most difficult of experiences.

No, that weekend highlighted for me what my true and biggest fear about his allergies and his health really is: that I will not be believed…that I will become “that” parent…and that the health professionals involved in my child’s care will doubt what I say, thinking I’m causing a fuss about something that is simply not true. The years spent chasing a diagnosis despite everything the doctors were telling us have taken their toll on my self-belief. I second guess myself at every turn. I discuss and dissect and deliberate my every waking thought about M with Mike to check that I’m not going mad, that he, at least, understands where I’m coming from and that I’m not being unreasonable or over-reacting to the situation.

Nothing demonstrates that self-doubt more than the fact that I insisted we tried M on the sweet potato again the following day when Mike was there, just so he could see the reaction for himself and confirm that what I had seen, and M had experienced, was true. Despite my natural concerns that it could have been an anaphylactic reaction, I needed Mike to be an eye-witness to it too and I had our back-up plans in place, just in case his response was even worse that time round (fortunately it wasn’t). I didn’t want to put M through the terror and pain of the reaction again, what parent would, but I needed to be certain that I hadn’t imagined it to be more extreme than it actually was.

I know that my confidence has been shattered by the very people who should have been supporting me and my family every step along the way – the medical professionals we’ve encountered on our journey. I am no longer comfortable in trusting my gut instincts about M’s health, even though I have been proved right time after time after time; and that’s simply not acceptable.

Being a parent is a hard enough job when you have a happy, healthy child – there are no superheroes living in secret in my local community as far as I’m aware; but the burden quickly becomes overwhelming once you throw a chronic illness into the mix. I find myself not always being able to state my case clearly or argue M’s corner when it matters most and I lie awake worrying in the middle of the night that the treatment I’ve demanded may not be the best course of action, or whether there was anything I forgot to mention at the most recent appointment. I know myself to be a strong, intelligent woman and yet I find myself being instantly returned to my school days, with all the mixed emotions of being sent to see the Headmaster, the minute I find myself facing a consultant.

And I worry that G is getting lost in the chaos that is hospital stays and food allergies and medicines and diagnostic tests and the relentless need to monitor, record and report everything. As she approaches her SATs and the prospect of moving up to “big” school looms ever nearer, my firstborn is growing up fast and I wonder how our relationship will survive the inevitable traumas of her teenage years when my focus so often has to be on her younger brother. Time together is rare and incredibly precious and something we both need and enjoy because I’m fully aware that I’m not necessarily getting this parenting thing right.

So, raising awareness this week has to be not just with the general public, although that is undoubtedly critical to protect the allergy-sufferers around us, but within the medical community too. For most of us, you are our firefighters and the people we are forced to depend on in our darkest moments. We need you to be strong, focussed and the experts that we are not, BUT we also need you to be gentle, compassionate and understand that you are holding the future of our most precious possessions in your hands. Don’t dismiss our concerns, but believe that we know our children best and have an insight or opinion that is just as valid as your professional one. Don’t belittle our emotions, but be empathetic when they overcome us and we need a shoulder to cry on more than anything else in that moment. Be honest, but in the kindest way, knowing that your words have the power to break us when we least expect it. Most of all, understand that we are constantly #livinginfear about our children’s health and life, so they don’t have to.

Why #allergyawarenessweek is important

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This week is Allergy UK’s #allergyawarenessweek and their aim is to raise awareness of the serious, and sometimes severe, impact of allergies on everyday life. Their campaign #livinginfear has invited allergy sufferers to talk about the frightening side of allergies, not least of which are the statistics that show an astonishing lack of knowledge about how to deal with serious allergic reactions amongst the general public. Recent research carried out by Allergy UK shows that 44% of allergy sufferers in the UK are living in fear of a serious reaction, whilst 68% of the people surveyed wouldn’t know how to deal with a reaction; and this lack of public knowledge could be forcing sufferers into a life of fear and anxiety. This useful infographic published this week uses the acronym FEAR to educate us all on how to recognise, help and potentially save the life of someone struggling with a severe reaction:

Courtesy of Allergyuk.org

Whilst M’s allergies are extensive and challenging, I have always been extremely grateful that he has never suffered anaphylactic shock from anything he has eaten, although the question of whether he could experience one has floated at the back of my mind for quite some time. We were lucky enough to be able to bring home a training epi-pen after our visit to the Allergy UK annual conference in 2014, though other than a cursory look when it first came home, I have to confess it’s been gathering dust in a box on top of one of our kitchen cupboards since then. We’ve even gone as far as discussing, late at night, whether we should have an epi-pen on hand at home “just in case”, but I’m ashamed to admit that that is as far as we’ve got in actually doing something about it.

Courtesy of foodb.ca

However, less than a month ago that decision came back to haunt me and I learned unexpectedly just what the reality of the #livinginfear campaign could be like. We were trialling sweet potato with M, a previous favourite that we were desperately hoping would bring some much-needed variety to his meals. The first mouthful on that first Friday night had been eagerly received and much enjoyed by M and although the following day was a little more fraught on the toileting front than it had been for a long time, we hoped it was nothing more than a temporary blip to be overcome. We ploughed on with the food challenges and M had taken to waxing lyrical about how much he was looking forward to including sweet potato in his diet once again. He even asked how long it would be before he could enjoy a “whole baked potato” once again.

It was at the 3rd meal and the increase to 2 teaspoons of mashed sweet potato that things suddenly and rather dramatically went horribly wrong. Mike, rather typically, was out for the evening at a charity whisky-tasting event and it was just me and the children enjoying our evening meal at home. M tasted his mouthfuls of the mash before anything else and then got on with the rest of his dinner. He got no further than half-way through when he suddenly grabbed at his throat and started gulping down mouthfuls of his glass of rice milk. He complained that his tongue was stinging and itchy, his whole mouth was itching and it felt as if someone had grabbed his throat and was squeezing hard. Two glassfuls of milk later and a frantic phone-call to Mike about what was going on, things settled down and M was feeling a lot better.

I had spent those 20 minutes just about holding it all together, whilst running anxiously through all the possible scenarios in my head and trying to work out what I needed to do if things took a turn for the worse:

Option 1 – Jump into the car with both children, trying to keep as calm as possible and race to our local hospital, 20 minutes away and with no car parking options on site: I’d get there, but what if he stopped breathing in the car and I needed G to get involved, even if it was just by using my mobile to phone for back-up?
Option 2 – Dash off to one of several nearby friends who are also doctors and ask for their help: much quicker, but at least one of those was at the same event as Mike and who knew whether the others would be at home
Option 3 – Call 999 and wait anxiously for an ambulance to turn up, all the time acting as the proverbial duck (calm on the surface, but paddling furiously beneath the water): how long would it take for an ambulance to reach us? Could I keep both children calm at home as we waited? What would I do if M stopped breathing? What would I do with G if we needed to rush off to hospital?

We were lucky. The reaction passed, although the stinging pain in his mouth and throat and the sensation of his throat tightening returned at odd times over the next few days. Following a lengthy conversation with our GOSH dietitian, it seems likely that M actually suffered an oral allergy to sweet potato rather than full-blown anaphylaxis, though it doesn’t quite fit with the known causes and triggers of Oral Allergy Syndrome. If you are interested to learn more about living with OAS, then I highly recommend the blog Feeding my intolerant child, whose description of her son’s oral reaction to a simple fruit ice lolly whilst on holiday is definitely reminiscent of those frightening moments at home a few weeks ago.

Needless to say, sweet potato has been banished from M’s diet for the foreseeable future and we are now seeking a local allergist who can help advise us on dealing with any other more serious allergic reactions that M might experience as we continue along the food reintroduction road. Oh yes, and we’ll also be pleading to get him an epi-pen for our own peace of mind and for the sake of his well-being and I will make sure that we all know how to administer it correctly.

Dinner Plans

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The beauty of staying in the amazing Applause apartments in East Aldgate was the ease with which we could accommodate M’s current dietary requirements at mealtimes. Every morning, he and G enjoyed a bowl of safe cereal and rice milk for breakfast, whilst Mike and I had coffee and brioche before we headed out for the day. Once breakfast was done, the children and I would finish getting ourselves ready and Mike would make and pack lunches for us all. The ability to prepare packed lunches was just what we needed as not only were we able to meet M’s extreme food requirements, but also the dairy- and gluten-free needs of G.

On our first day there, we stumbled across a fantastic shop called “Planet Organic“, where we were able to pick up some previously undiscovered M-friendly bits and pieces, including mini rice-cakes, which are perfect for his lunchbox. Of course, with the packet now nearly empty, the race to find them closer to home is on before he finishes them off. The brown rice noodles have also been a massive hit and make mealtimes just that little bit more interesting than they have been over the last 3 months. Sadly, the one thing we had been hoping to find, rice pasta, was sold out and so my search for that alternative continues.

The more interesting task was that of our evening meal. One of the things we have always loved to do is eat out as a family and it is one of the things that M in particular has found hardest about having his tube. We have had a wealth of experience over the last decade of finding restaurants that will accommodate the ever-changing dietary needs of G, M and even me and we had settled on a few firm favourites that we knew would almost always meet our requirements. Of course, the option to cook dinner where we were staying was great to have, but Mike and I were both looking forward to having a break from the monotony of 3-ingredient dinners and decided to do some focussed research before we even left the comfort of our own home. We spent hours one evening trawling the internet, finding restaurants in the areas of London we were likely to be near at meal-times, looking at their menus and investigating whether they had allergen information readily available to read then and there. To our delight, we found a few where we knew we could cater for G and where it seemed probable we would also be able to order safe food for M, and we couldn’t wait to put our selection to the test.

Our first was Giraffe, which is just round the corner from GOSH and a popular choice for our post-appointment dinners. When we got to the restaurant, I asked the waitress at the door whether they would be able to cook safe food for M before she had time to find us a table and the response was fantastic. She turned out to be the restaurant manager and headed off in the direction of the kitchen to talk to their chef and find out exactly what our options were. The chef assured us he could cook plain, boiled rice and grill a chicken breast for M without using any oil, so, feeling hopeful that this could prove a success, we found a table to enjoy our first family meal out for 5 months. M was delighted with the plate of food that arrived for him and had no allergic reaction to any of it, reassuring us that Giraffe is a safe choice for the future.

As it turns out, Giraffe was the only restaurant we ate at that was able to cook plain rice for M, but we enjoyed 2 other great meals out and both restaurants were more than happy for M to munch away on his own rice-cakes to accompany his chicken and cucumber. The second restaurant was Bella Italia, a popular restaurant chain found across the UK and we had dinner at their St Martins Lane branch. Again, our waiter worked with the chef to ascertain exactly what could be prepared for M and this amazing plate of food arrived – M joked that he thought they had cut him up a whole cucumber to make up for the lack of variety on his plate. We were also impressed with how much their gluten-free offerings had improved since the last time we ate there as G was able to enjoy some GF garlic pizza bread alongside her GF margherita pizza with pancetta and ham with goats cheese.

My final recommendation is Jamie’s Italian and I can’t begin to tell you how impressed we were with the excellent service provided at their Canary Wharf restaurant. From the greeter who listened to our initial needs to the manager who came to answer our questions before we even got to the table, they were keen to reassure us that they could meet all our requirements. As for our amazing waiter, Tom H, he listened carefully and patiently to what we needed, made sensible suggestions based on M’s safe foods, checked with the chef that everything could be prepared safely and treated M just like any other child eating in the restaurant. He was delighted with the plate of food that arrived at the table as it was presented in the exact same way as G’s dinner and his unparalleled attempt to eat almost all of the food served earned him the same prize that G was awarded for eating her salad – an achievement that we rarely manage at home.

All in all, our trip to London proved to be a fantastic and unexpected success when it came to our dinner plans for our stay. We found 3 restaurants who were prepared to go the extra mile, make the effort and help us enjoy some great meals out. Even better, M had the opportunity to feel more “normal” than he has done in a long time, which, for us, was absolutely priceless.

Home or away?

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With a trip to London for M’s GOSH appointment an unavoidable part of the Easter holidays, we decided to make the best of it and spend a few days there on our very own mini city-break. In preparation we spent one Sunday afternoon leafing through the pages of Mike’s “501 Days Out” book, looking for inspiration for what we could do during our stay and G and M quickly filled a sheet of A4 with their suggestions. It was left to Mike and me to make the final cut and hone our plans and, despite desperate requests for Legoland Windsor and Chessington World of Adventures, we decided to stick to those attractions within a reasonable distance of where we’d be staying and drew up a list that felt exhausting just looking at it.

This epic event was our first overnight stay away from home since M had his tube back in December and I drew up ~~thousands~~…~~hundreds~~…well one very long list of everything I needed to do in preparation. My first job, once our trains were booked, was to find somewhere to stay that would meet all of our requirements. Usually we choose to stay in one of the Premier Inn hotels on the south-side of the Thames, be it near the London Eye or closer to Southwark Cathedral and find them a great base for walking, or using the underground, to almost anywhere we’re intending to visit. Unfortunately, leaving the actual booking to a little late in the day meant that none of our usual suspects of hotels was available for the 3 nights we were planning to stay and instead I had to search for a suitable alternative. Whilst browsing frantically looking for a room at ~~the~~….an….any inn, I came across the option of a serviced apartment and things suddenly started to fall into place.

We chose a one-bed apartment in East Aldgate, not too far from the Tower of London and easy walking distance from the nearest tube station. The benefits seemed huge:

with a separate bedroom and pull-out bed in the living area, G would be able to go to sleep at a reasonable time, whilst M played his usual night-owl games
there would be plenty of space to store all of M’s medical gear as well as the supply of safe foods for both him and G that we would take with us
having a kitchen meant we could easily prepare M’s feeds, make packed lunches and even cook dinner, thereby covering every possible meal-time option we might face
it also meant we would have a fridge to keep cooked meats, cheese for G and M’s feeds in overnight without the need to request one beforehand and then keeping our fingers crossed it would be available when we checked in
finally, we would have a quiet place to retreat to when things got too much or the children needed some down time in the middle of the day

So it was an easy decision to get that apartment booked. The days flew past until finally I had no choice but to tackle the task of packing for our trip. By the time I had everything I needed for M in the case, plus our supply of safe foods for both G and M, I was beginning to wonder whether I’d have room for any of the clothes the 4 of us would need for 4 days in London. With some canny packing and careful choices about exactly what was necessary, I just about squeezed everything in and we were ready for our next big adventure.

Back to work for a rest

A tri-umph of rice-themed goodies!

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Recently I’ve been spending my time baking and cooking up a whirlwind as the days ahead have been looking busy. With a day for G and M at the holiday club run at Mike’s work, an appointment with M’s consultant and dietitian at GOSH to review his progress 4 months post-tube and a planned short stay in London to see the sights and to dip our toes into the world of being away from home with NG-tube in tow, a plethora of safe snacks and treats for M were much in need. I prepared rice pudding, rice-flour sugar cookies and rice krispie cakes to satisfy the appetite of my youngest and to reassure myself that we would have some things with us to feed him whilst the rest of us enjoyed some much-missed meals out. I also used the opportunity whilst trialling banana to add some to the mix and made some banana sugar cookies too.

The recipes can be found in the everything-free recipes section and are so easy to follow that next time round, my plan is to be sitting back with a cup of tea, whilst G and M get on with the task of creating their own delicious masterpieces!

Who knew you could make so much from rice, sugar, rice milk and canola oil? Any other suggestions for simple recipes will be very gratefully received!

Hotel Chocolat – New “Dairy-free” Chocolate range (Hint – it’s not!)

Easter weekend

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Last year, Easter weekend was all about…

A slice or two of this…

…several of these…

….and quite a lot of this!

This year, it’s more about this…

Happy Easter!

“Muuummm, what’s for tea tonight?”

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Oh how this resonates..

If your family is anything like mine, that question usually comes just as you’re struggling through the door: with house keys in one hand, car key gripped firmly between your teeth, handbag on one arm, cello on your back, mobile phone pressed to your ear as you attempt to talk to the dietitian/consultant/other healthcare provider, who’s asking if now is a good time to talk and you can’t say no as you’ve been trying to contact them urgently for at least the last 3 days and who knows when they might call again; plus the school bag(s)/shopping bag(s)/extraneous bag(s)* (*delete as appropriate) you’ve picked up along the way are weighing down your other side and threatening to upset the delicate balance you’ve perfected in your struggle to cover the 100 yards or less from your car to the house. Meanwhile, your curious offspring are waltzing in behind you, or possibly squeezing past you, through the already impossibly small and too-narrow-to-negotiate-safely doorway, bearing no more than a half-empty water bottle and their coat, worn superhero style to leave their hands free to carry absolutely nothing else at all. And just as you think you’ve achieved it and managed to get everything safely inside, they open their mouth and ask that unavoidably fraught dinner-question and the peace shatters and your world tumbles down around your ears. Does any of that sound familiar or is it just my household?

For M at the moment, my answer is fairly standard, although he adds his own unique twist by asking if dinner will be “chicken with rice and cucumber” or perhaps “rice and chicken with a side of cucumber”? For a while, when he was still 100% elemental, he would even ask if he could have “air-sticks” – “like bread sticks you see, but without the bread” – showing that the ability to laugh his way through this experience is his greatest strength in beating this disease. I have become a self-confessed expert in cooking with 3 principle ingredients – rice, chicken and cucumber – and the bonus extras of herbs, rapeseed oil and sugar. Rice has been broadened to include its derivatives and the inclusion of rice milk, rice cream and rice pops (as long as they’re gluten-free) has added to my ever-increasing repertoire of 3-ingredient recipes.

Rice-flour sugar cookies

In the past few weeks, as well as my fall-back favourites of roast or grilled chicken with plain boiled rice, I have also perfected deep-fried savoury rice balls, chicken nuggets, chicken and cucumber curry, fried rice, chicken stir-fry, rice-flour sugar cookies and rice pudding. My Mum has also made M a chicken breast stuffed with rice and cucumber, courtesy of the inspiration and some nifty hints suggested by our hairdresser and which was an instant hit with our young diner. It’s surprising just how many different recipes you can create with just a few ingredients and there’s even a few more that I’m hoping to try out in the coming weeks. What started out as a daunting challenge to entice M’s appetite and encourage him to once again eat whilst navigating the tricky world of identifying his food allergies, has become yet another success story in our household.

My victory with such a limited range of ingredients has been all the sweeter given the recent UK news story of the letter sent to the Daily Telegraph newspaper by over 100 top chefs and restauranteurs condemning recent EU legislation requiring restaurants to provide information about which of the top 14 allergens the dishes on their menus contain. It was never a requirement that they did not cook with these ingredients, but rather that they should be able to inform diners of what the food prepared contains, with the knowledge and pride in their ingredients that I would expect from any talented chef. Whilst widely welcomed by those of us in the allergy-world as a step towards helping us make informed decisions about eating out, these chefs warned that such requirements would harm “…the spontaneity, creativity and innovation restaurants and others in the industry have enjoyed up until now.”

Like so many others in my situation, I wrote a response on the Telegraph website, pointing out that this legislation will help me to protect my children and give them experiences that will ensure their continued health and enjoyment, I do not deny that it’s up to me (and they as they grow older) to ask about allergens, but there’s no point asking these questions if the restaurants, waiting staff or chefs cannot provide the information needed and the lack of understanding about cross-contamination risks is sadly common across the food industry.

Our experience last summer in Disney proved that this type of requirement does not need to be restrictive as excellent allergen information was readily available and nearly everywhere we ate produced meals for G and M that rivalled those being served to any other customer there with a “normal” diet. The chefs were knowledgable, came to our table to discuss their allergy needs and made the effort to find out what my challenging duo would like to eat – excellent service all done with a smile.

The big challenge was always to cook M-friendly food and these days that task has become even more testing. In my opinion, these rules will have little impact on spontaneity or ingenuity – try cooking or baking when you need to avoid wheat/gluten, egg, dairy, soya and potato to name but a few. Ingenuity comes when you try to prepare a meal that makes your child feel that they’re not missing out and that’s something I feel I’ve proved is possible, even for an amateur cook like me.

7 years to diagnosis

Searching for an answer

Author Archives: bluesingingdragon

About bluesingingdragon

London: our whistle-stop tour

Because #livinginfear is not just about the allergies

Why #allergyawarenessweek is important

Dinner Plans

Home or away?

Back to work for a rest

A tri-umph of rice-themed goodies!

Hotel Chocolat – New “Dairy-free” Chocolate range (Hint – it’s not!)

Easter weekend

“Muuummm, what’s for tea tonight?”