Tag Archives: eating out

Cornwall restaurants – The good, the bad and the “could try harders”

The Trewithen restaurant in Lostwithiel set such a high standard on our very first night in Cornwall that I wouldn’t blame you for thinking that the rest of the week would naturally fade into a desultory second place when it came to our meals out. However, given the extensive food restrictions that need catering for within our family, we ate extremely well and were more than pleasantly surprised by the mix of menu options that were available for us. I thought I’d give you a quick overview of the other great restaurants we visited during our holiday and what allergy-friendly options they were able to give:

The Galleon Inn, Fowey – this harbourside pub in Fowey gives generous servings of delicious pub grub and features fish and seafood on both their a la carte menu and their specials board. They were able to serve safe chicken, cucumber and peas (his food challenge for the week) for M and, whilst it wasn’t clear what their other free from offerings were, we were able to order gammon, chips and peas for G, which she loved. Although the staff were friendly and helpful, we couldn’t clarify that the chips were 100% GF, so for anyone who struggles with cross-contamination issues, I would suggest ordering a different side.

Pizza Express, Falmouth – we visited the brilliant National Maritime Museum in Falmouth with G’s lovely Godmama and her family and were able to eat lunch at the Pizza Express situated across the square. We were able to order our usual allergy-friendly fare here and although the service was disappointingly slow and the food not quite as good as at our local Pizza Express, we were still happy with the meal we had. A definite go-to in terms of national chain restaurants when looking for somewhere safe to eat.

Eden Project, Bodelva – following my perusal of their website and an email exchange with a very helpful customer liaison co-ordinator, we had gone well prepared with a packed lunch and range of suitable snacks for both G and M and I’m definitely glad we did. The queues in the main cafe area in the biomes were horrendously long and their staff disappointingly uninterested in speeding things up to try to reduce the waiting time. Mike and I enjoyed our tortillas and the server I spoke to advised that it was possible to adapt some menu items to be both gluten- and dairy-free and I struggled to find any snacks that were readily available and obviously allergy-friendly. Given how long we did wait (close to 25 minutes for a mid-morning coffee and snack!), I’m glad we weren’t dependent on that to feed G. We loved our visit, but were disappointed by the food on offer and would take food for us all the next time.

Tate St Ives – this was the surprise success story of the week for G and we even managed an unexpected treat for M too. They had comprehensive allergen information readily available and were able to offer all of their sandwiches on GF bread. G was so thrilled, she ordered an egg mayonnaise sandwich with a helping of GF chips on the side and enjoyed every mouthful. I spotted cucumber sorbet on their dessert menu as part of a Pimms jelly extravaganza and asked if they knew what it contained. The answer quickly came back from the chef that it was safe and so we were all able to enjoy a pudding. G had an orange and polenta cake that barely touched the sides as it went down and M had a couple of inquisitive mouthfuls of cucumber sorbet, although his final conclusion was that he’s not keen to try it *ever* again!

Sams, Fowey – part of a popular Cornish “chain”, perhaps best known for Sam’s on the Beach, we visited their Fowey restaurant, which I can best describe as a Cornish version of the Hard Rock Cafe! Once again, they were able to cook M-friendly chicken and cucumber, whilst G enjoyed fish and chips. Their system of no booking ahead meant we had almost an hour wait for our food, but we spent it upstairs in the bar area and the time just flew by. I am not 100% certain of just how safe G’s food was, but am reliably informed that their Polkerris location can cook a mean gluten- and dairy-free pizza, an adventure for another time for us.

The Godolphin Arms, Marazion – our day out to visit St Michael’s Mount ended with a table overlooking the Mount as the sun set and we enjoyed our dinner. I knew that this restaurant could provide GF offerings, thanks to this great blog and the opportunity to give it a go and enjoy the spectacular view was too good to miss. M enjoyed a more complete dinner here as they were able to prepare rice, chicken and cucumber for him and G picked the GF burger and chips. We received great service even though the restaurant was busy, but had a disappointing cross-contamination risk during dessert. Our request for lemon sorbet for M was met, but unfortunately, once he was half-way through his bowl, we discovered traces of a red sorbet mixed in with the lemon. It was immediately obvious that the kitchen staff had used the same scoop to serve his lemon sorbet, even though the serving staff had made every effort to ensure that the sorbet was safe for him. Our waiter was extremely apologetic, was very concerned about the cross-contamination risk to M, who fortunately hadn’t eaten any of the other flavour when he spotted it and spoke to the manager to ensure that the kitchen staff were reminded to be vigilant with the allergy-friendly meals.

The Malt House Harvester restaurant, Exeter – I’d been wanting to give the Harvester restaurants a try for a while and our return home gave us such an opportunity. I love the salad cart that’s available and knowing that both rice and chicken are almost staples to the menu, I felt confident that it could work. On announcing our allergy requirements on arrival, I was handed a massive and somewhat unwieldy ring binder containing their allergen information, which took me a good 10 minutes to navigate. I eventually was reassured that the chargrilled chicken breast would be fine for M and he was able to have basmati rice and cucumber to accompany it. G picked the baby back ribs with chips which appeared to be both GF and DF and enjoyed selecting her salad from the cart. The ordering process may have taken a little long due to the complexity of their allergen information, but the meals at the end made it all worthwhile.

The Tremendous Trewithen Restaurant, Lostwithiel

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We knew this year would be a very different holiday to our last one in Florida or our more regular stints in Portugal, but Mike and I were looking forward to a week off work and hopefully grabbing some last moments of sun before September arrived. As it turned out, we had far more sun than we had originally expected, or as the forecast had suggested and even managed to visit some of the beautiful Cornish beaches as well as our other planned days out. Aside from the weather and the inevitable question of whether we’d get everything in the car (we did – just), my biggest concern was whether we’d be able to enjoy some family meals out during our week away, an integral part of any of our holidays and not least because I was desperate to have some time off from the kitchen and the need to constantly find new ways to tantalise M’s temperamental taste-buds. The time taken beforehand to search out possible restaurants that would be able to cook for M and G proved to be time well-spent and we found some amazing options that we would happily recommend to anyone, food-allergies or not.

Our all-time favourite restaurant and the one we would visit again at the drop of the proverbial hat, was the truly amazing Trewithen restaurant based in Lostwithiel, the ancient capital of Cornwall. I had discovered this restaurant during one of my many sessions on Google (don’t ask me how as I’ve struggled to find that original review again!) and had started the ball rolling by sending an email enquiry to find out if they could cater for M or not.

This was the fantastic and prompt response I received from Paul, owner and chef, and immediately prompted Mike to ring and make a reservation for our first night there.

Excited by the prospect of a meal that we were confident would be prepared with M in mind, we arrived ahead of schedule (practically unheard of in the 7Y2D household) and were seated in their charming back dining area. The restaurant is set over the 2 floors of a 17th century townhouse, which gives it a cosy atmosphere and you feel like you’re eating amongst friends. The menus arrived at our table and here was the first big tick of our evening. G was presented with their Junior menu, which had been carefully annotated just for her to show which options could be made both GF and DF as she needed. As she spent time perusing the dishes, M was informed that the chef was busy preparing his dinner – a small touch, but such a thoughtful one as it helped him to feel as much a part of the dining experience as the rest of us. We were given baskets of delicious bread with a variety of butters, oil and vinegar to enjoy whilst we chose our meals and G was thrilled to receive her very own serving of GF bread and DF butter. We had taken some rice crackers for M to nibble on as we enjoyed our starters and, having been informed that they cooked with local rapeseed oil, we asked if he could have his own mini dish of rapeseed oil to dip his rice crackers into – a request that was instantly met and received his great approval.

To our delight, so tempted was G by the menu in front of her, she decided to try something new and picked their Tomato and Basil soup to start, followed by the GF penne pasta with a tomato sauce and goats cheese; and I don’t think I have ever seen her plate empty quite so quickly when out for dinner. M’s meal was equally successful and he enjoyed a “mountain” of rice, strips of cucumber and a beautifully marinated and succulent chicken breast. The waiting staff were knowledgable, polite and helpful throughout our meal and at no point did we feel that our requests were too much trouble for them to handle. The meal was such a success that when asked if we should come back again later in the week, M’s response was an immediate “..of course!..” Even better, we heard what has to be one of the quotes of the week from M that night in response to Mike’s question of whether he wanted to come back because it was “posh”.

“Well yes Daddy, of course. Who doesn’t like posh restaurants?“

Our return visit couldn’t come quick enough for our impatient duo, who asked almost every day whether tonight was “the night” for going back there and that evening didn’t disappoint either. We persuaded G to try something different and she picked GF, DF fish, chips and peas, which were declared the “most delicious ever” and was able to have dessert of DF vanilla ice-cream. For those of you battling with the need to eat dairy-free, you will understand just how excited I was to see this on their menu as we generally find the puddings are either GF or DF, rarely both and usually not something our little Miss Picky will eat. As for M, well that night he ate like a king and I still have absolutely no idea where he put it all! To accompany his plate of safe foods, the chef had also prepared him some apple ring crisps and deep-fried sage leaves and M was in seventh heaven. He not only cleared his plate, but asked for more and the kitchen was more than happy to cook another chicken breast for him as quickly as they could. I had taken a dish of home-made safe apple crumble with me for M to enjoy, but had no need to produce it at the table as they had lemon sorbet on the menu, which proved safe for him to eat. Our waitress was fantastic in writing down the ingredients for us so that we could check it was 100% safe and the look on M’s face as he slowly swallowed that first mouthful was simply magical.

And really, I need say no more. The restaurant impressed us from the start with their obvious understanding of food allergies, their knowledge about cross-contamination risks and their attention to the fine details which meant both children really could enjoy an excellent 3-course meal with all the “twiddly bits” on offer too. I loved that the menu was carefully annotated to meet the food needs of every individual customer and that the ingredients in the dishes were listed, so you knew exactly what you were eating and there were no hidden extras. They happily swapped my mashed potato for rice on our second night and willingly went that extra mile when we asked if they could cook more for M. They were even happy to give me the recipe for the marinade used for his chicken, so I can attempt to replicate the dish at home. A big thanks to Paul, Claire and the rest of their team, who made our meals during that week an unforgettable experience. I don’t know when we’ll be back, but we certainly intend a repeat visit if at all possible and they well deserve the phenomenal 20 out of 10 that M awarded them!

A Pizza restaurant success story

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Over the last few weeks, I’ve been blogging a lot about the new recipes I’ve been experimenting with and some fantastic restaurants we’ve found, who have been amazing at providing safe food for M. With food trials proving to be a far lengthier challenge than the medics imagined, the opportunity to gently encourage M back to enjoying eating out on occasion has been one we’ve grabbed with both hands in order to maintain some much-needed sanity and time-out from the kitchen. Our latest foray was back to an old favourite of ours, Pizza Express, as in the past 4 or so years we’ve enjoyed allergy-friendly meals out, school trips and birthday parties there. I thought it well-worth a return visit to see whether it could now meet our new and somewhat exacting requirements.

Our lunch-time adventures started with a phone-call to our restaurant of choice to see whether they would be able to cope with M’s diet or not. Whilst we don’t always phone ahead, we were going to be in a part of the city where alternative choices were not readily available and we didn’t want to be trawling the streets with 2 grumpy and increasingly hungry children in tow. Mike spoke to a very helpful woman, who was able to confirm that they had plain chicken readily available and would be able to provide the chicken and cucumber parts of the meal. Unfortunately, as we have found in other restaurants, Pizza Express couldn’t cook plain rice for M, but were more than happy for him to eat from our own stash of rice-cakes or crackers whilst the rest of the family enjoyed our lunch.

Armed with the reassurance we were after and having convinced a very reluctant M that we really needed to stop for lunch soon, we headed off to the restaurant. Our waitress was brilliant and didn’t bat an eyelid on hearing our requests for a gluten-free, dairy-free American pizza with goat’s cheese for G and a plate of plain chicken and cucumber for M as well as Mike and my more normal menu selections. The plates of food arrived and my picky pair set to trying it all out. The top marks out of 10 (an unbelievable 10/10 from M), empty dishes and requests for seconds that quickly followed were a sure-fire testament to the meal itself and we are delighted to have found yet another M-friendly restaurant for us all to enjoy.

A taste of Asia

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Belonging to an on-line support community such as FABED is fantastic, but also really something of a mixed blessing. The joy of being able to build friendships, ask questions and sometimes simply celebrate a milestone with others through a deft few keyboard strokes is always tempered by the isolating knowledge that these families, walking a similar path to ours, might live hours away from us and chatting in person is not always easy to do. We have been lucky enough to meet up with some families over the last 4 years and have some amazing new friends who really understand the stresses and strains of living with a chronic illness. By far and away, one of the best benefits has been sharing recipes and restaurant recommendations and it was following such advice from a fellow FABED Mum that we recently ventured into a completely new dining experience for us all.

To say we were impressed from the moment we stepped through the door of our local Wagamama restaurant is no overstatement and not one part of the experience that followed let them, or us, down. I’ve learned to broach the subject of M’s complex dietary requirements at the restaurant door to save heartache all round and their greeter not only made a sensible suggestion based on the short list of safe foods I gave him – Mini grilled chicken noodles minus a few ingredients – but also headed off to talk to both the chef and the restaurant manager to confirm they could prepare a tasty meal for M that would be as free from cross-contamination risks as they could make it. Reassured that they could accommodate his food needs, we took our seats before perusing meal options that would also suit the rest of the family. Whilst M was hugely excited about having rice noodles for his dinner, G was less keen, but with 3 different types of rice available, even my pickier eater was happy.

The restaurant manager acted as our waitress and was invaluable in helping us make sensible choices for all the family and our differing allergy requirements. The greeter had done a great job of passing the information on to her and she started by addressing how they would prepare M’s meal to ensure it was as M-friendly as possible. As M is only able to tolerate rapeseed and coconut oils at the moment, the chef suggested they steamed him a fresh piece of chicken, which had not been marinated, and which would not have the risk of picking up any food or oil traces from their other pans. They also cooked a fresh batch of rice noodles, again in a clean pot to avoid obvious cross-contamination and served them with a healthy portion of cucumber “noodles” – a meal fit to tantalise our young foodie’s taste buds. The plate that appeared was impressive and M gave the meal a well-deserved 9/10 (he wasn’t so keen on the cucumber noodles and docked them a mark for that presentation!).

G chose a stir-fried rice and chicken dish (Mini chicken cha han) from the children’s menu and we saw, once again, the impressive and extensive knowledge the restaurant staff had about their food when I asked if the dish was both gluten- and dairy-free. The manager knew without checking that the sauce contained gluten and advised that most of the other sauces they use in their dishes do too. However, she was able to recommend Tamari sauce, which is gluten-free and would add great flavour to G’s meal. G was as delighted as M when her bowl arrived at our table and she awarded them a well-deserved 9.5/10.

Mike and I were not only thrilled to have found a restaurant that was hugely capable of meeting our exacting requirements, but also had great meals ourselves. The service was fantastic and when a small error resulted in the wrong side dish arriving at our table, they prepared the one we’d originally asked for and gave us the wrong one for free. Back in March of this year, there was a furore when newly introduced EU legislations required restaurants to provide information about the top 14 allergens contained in their menus and over 100 top chefs and restaurants condemned the requirements as an unnecessary and inconvenient constraint on the spontaneity and creativeness of their profession. From the faultless service to the extensive menu knowledge, every single thing about our meal at Wagamama screams out that no chef worth his salt need be worried about such demands and I wouldn’t hesitate to recommend this restaurant chain to anyone looking for an allergy-friendly place to eat.

“So much time…

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...and so little to do. Wait a minute. Strike that. Reverse it…”

– Willy Wonka, “Charlie and the Chocolate Factory” (Roald Dahl)

This past week has been busy and there’s still lots more to do, not least of which is a proper blog post. However, the reality that is choir rehearsals,..SATS revision,..sunflower growing,..Anglo-Saxon house building,..SATS revision,..CAMHS appointments,..food-trialling,..SATS revision and May Bank holiday trips to Legoland Windsor for “Star Wars Day” as well as time spent prepping for EGID awareness week with Powerpoint presentations to perfect and conversations with local media to be had, means that this week’s posts have gone by the wayside, so instead here’s a small photo round-up to give you a taster of all the fun we’re having:

“Elementa(l)ry, my dear Watson”

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.

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!

“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.

How to survive a hospital stay – the Parents Edition

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Courtesy of yoast.com

When M was admitted to GOSH for a week for repeat scopes back in October 2013, I turned to the wonderful support network that is FABED and asked for some tips on the essential things I needed to take to get us both through that week. The resulting list was my parent’s survival guide, a resource I found myself turning to once again before our most recent admission. However, the one area I didn’t cover in that survival guide was what I did to get through those endless hours, especially when M was otherwise entertained or busy at hospital school and my lovely friend, F pinged me an email all the way from Canada to make this very point. She had her own set of questions about what I’d got up to whilst M was in GOSH, telling me what I’d missed from my previous posts and I thought I’d share with you all my curiosity-satisfying answers.

Where did you sleep? – I do so hope you didn’t need a hotel

No, no hotel for me, though actually there were times when a hotel room would have been invaluable. I slept next to M’s bed in a modern version of a medieval torture device: a chair that supposedly converted to a bed, though I think sleeping on a mattress on the floor, or even just the bare floor itself, might have been more comfortable. There were definitely some mornings when I would have killed for a good night’s sleep or the opportunity for a long soak in a hot bath, but sleeping in “the bay” with 3 other patients including 1 baby meant that my nights were often disturbed. M’s cubicle contained 1 of the 2 sinks for the 4 beds, which meant that one notable night, I had doctors, nurses and parents trooping through past M’s bed in a steady stream during the early hours as they needed to wash or sanitise hands and access sterile gloves.

The long-term gastro ward is shockingly out-dated and the facilities don’t meet the needs of the patients or their parents. Unbelievably there is just one bathroom for 16 beds and only 2 other toilet cubicles, so you were constantly having to keep an eye on the bathroom to make sure you could dash in there before it was in use again. Given this was the location of the height chart too, you can imagine just how in demand that single room was.

What did you eat when you were there? (I can only imagine this expense adding up if you were buying all your own meals)

Courtesy of mirror.co.uk

The expense certainly did add up as I had to provide all food and drink for myself during the admission. The small kitchen had a fridge which parents were able to keep food in, but I often found myself heading out each day to get some fresh air as well as my meals for the day. There was also a microwave and crockery and cutlery, so that did make having a hot meal a little easier. I kept some bread and crackers for breakfast and then would go out to buy sandwiches, ready meals or other snacks for the rest of the day. There are several supermarkets in the vicinity, so there was reasonable choice, though the largest shop is a Waitrose, which definitely didn’t help with the cost.

I didn’t really eat out too much, though I took G out for meals whilst she and Mike visited and I treated myself to the odd coffee or hot chocolate mid-morning from one of the nearby coffee shops. I also had a really lovely dinner out with one of my fellow Mums on the ward. We headed across the road from the hospital to a small Italian restaurant and enjoyed some delicious food, great conversation and a small glass of wine each, whilst the boys were under the watchful care of the nurses!

How did you pass time? – Surely M didn’t need you every second of the day?

The first few days M was reluctant to let me out of his sight for long, especially when he was struggling to cope with the effects of the bowel prep on his system. He understood that I needed to go out and get something to eat so that I didn’t make myself ill, but I would bring the food back onto the ward to eat at his bedside. He didn’t necessarily engage with me for most of that time, preferring to be plugged into the TV or playing his tablet or DS, but my presence was very much required. I took a supply of magazines, books and various puzzle books with me as well as my laptop, so I was able to entertain myself whilst he was absorbed in what he was watching.

Once he started going to school, I spent my time off the hospital ward as much as possible, taking walks in the local area and getting some fresh air or doing the more mundane chores of laundry or tidying up our very small bed area. I was lucky enough to be able to arrange to meet up with several of the lovely FABED Mums whilst we were there too as their children came in for various appointments or procedures. It was great to actually meet, sit down and chat with some of these folks who’ve been giving support over the last 4 years and to finally put faces to names.

Did you have opportunities to have ‘a break’?

My only breaks were relatively short ones when M was in school or the evening he went to Scouts. Some parents lived close enough to be able to go home or even into work during the day, but being over 2 hours away from London made that impossible for me. The 2 Saturdays when Mike visited, he spent most of his time with M, so G and I could go out and have some quality time together. We went to a coffee shop for elevenses both weeks, I took her out for lunch the first week and the 3 of us went out for dinner both evenings before they headed home. We were lucky that there are restaurants nearby that do gluten- and dairy-free food options, so eating out with G proved to be easy to do. But that was it. No other breaks for me as it was, all things considered, a relatively short admission and I needed to be advocating M’s needs during our time there, something I just couldn’t take a break from.

How do you stay sane while there?

Who said I did?! Truthfully, my sanity remained as much in tact as it did thanks to amazing support from family and friends. The folks who dropped me an email, sent me a text, popped something in the post for M or even arranged for a beautiful bouquet of flowers to turn up completely unexpectedly. And that’s not even thinking about the wonderful Mums I met on ward, who were all there for varying lengths of stay, for vastly different reasons and who gave me an ear to bend and a shoulder to cry on when I needed them the most. Believe it or not, we had a lot of fun in the evenings, sitting in the bay, comparing stories, sharing opinions of nurses and consultants, chatting about life and generally putting the world to rights. Those friendships were made in the hardest of times and the strangest of situations, but are worth more than their weight in gold. I met amazing parents who are facing much bigger challenges than we have to cope with and yet go about everyday with a smile and a kind word for everyone they meet. We all had our down days when we needed the support of those around us and I can’t think of a nicer bunch of people to have been through that experience with (Rhys, Lauren, Caroline – you know who you are and thank you!)

7 years to diagnosis

Searching for an answer

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