Tag Archives: holidays

Every Cloud…

Easter weekend, and a piece of bad luck combined with a chance encounter led to the discovery of an absolute hidden gem that we wouldn’t have discovered under any other set of circumstances. G, M and I were enjoying a Saturday out and about, when an unexpected puncture disrupted our day and found us searching for the help of a Kwik Fit centre in the small North Somerset seaside town of Clevedon. The staff warned that it would take a couple of hours to replace my tyre as I was at the back of a somewhat lengthy queue and so the children and I headed in the direction of the town centre to see what we could discover whilst we were there.

Shrugging off the unwelcome stress of the situation, we enjoyed the sun as we chatted and walked together, with G and M laughing and sharing their thoughts on just about any subject that crossed their minds as we wandered the streets. However, the lack of a prompt lunch soon began to catch up on us all and following the advice of the cashier at a nearby shop, we found our way to a local café to see what, if anything, we could have for lunch. My expectations were low and I had managed to pick up a pack of rice cakes that M could eat, whilst I kept my fingers crossed that I might be able to buy something that was not only safe for G, but that she’d eat as well. I could never have imagined the ultimate success story that was about to unfold before us.

Café Fusion is an unprepossessing cafe in this lovely seaside town, tucked away on Old Church Road, nestled between a hairdressers and a charity shop. I took a quick glance at the menu in the front window and didn’t hesitate to enter the minute I spotted the large number of gluten-free sandwiches so clearly on offer to customers. It didn’t take long for G and me to decide what we were going to eat – an egg mayonnaise sandwich on toasted gluten-free bread for G and a cranberry, bacon and brie one for me. M took a fancy to the Apple Tango in the fridge and a quick perusal of the can suggested that this would be a great option for him to enjoy alongside his plain rice cakes. Not an exciting lunch by any stretch, but I hoped that it would fill a gap as a temporary measure at very least.

The waitress was understandably confused that I only ordered 2 sandwiches for the 3 of us and I soon found myself explaining the situation and that M is only able to eat a handful of foods on a regular basis. The chef had obviously been listening from the kitchen and popped his head around the door to ask what M’s safe foods were. Within minutes of me listing the 6, he offered to whip up a serving of plain steamed rice, plain chicken and fresh cucumber for M’s lunch. I couldn’t believe my ears that this tiny cafe was able to offer a completely safe meal without any fuss, something that has never happened without the careful planning and implementation of strategic military-esque manoeuvres beforehand. M was thrilled to hear that he could eat a proper lunch alongside G and me and couldn’t wait for his plate to appear. The food when it came was absolutely delicious and the sight of 3 empty dishes was all the indication needed to show just how good that unplanned lunch was.

It absolutely wasn’t the Easter Saturday the kids and I had in mind when we set out that morning, but it only goes to show that every cloud has a silver lining, even when it comes to complex dietary requirements.

 

A touch of Disney magic

Three months since Christmas and nearly all of those festive treats have disappeared from the kitchen cupboards to be replaced with Easter ones instead, but last weekend G finally got to enjoy her Christmas present, just in time for the Easter break. Having waited so long for the day to arrive, we decided to make it into a mini family celebration,  starting with a car journey to Cardiff with G and M wiling away the time singing along to the Cats soundtrack. Once we arrived, we started with a brief stroll into the City centre, looking for the perfect place to stop for an early tea.

I had done a little research before we left home as I was keen to find somewhere new to eat and was hopeful that Mexican chain restaurant, Wahaca, might be able to provide us all a dinnertime treat. Before we were led to our table, I spoke briefly to our hostess about the somewhat complex dietary requirements we have at the moment and was assured that she was confident that they could put together a safe meal for us. I took my seat, clutching their comprehensive gluten-free menu and accompanying allergens listing to study whilst we tried to choose our dishes. Wahaca is a new dining experience for us all and we were hard pressed to know where to begin with our choices, especially as we had no real idea about portion size.

Mike and I opted for their Mexican Feast to share, which is made up of a number of smaller portions from the menu, including tacos, quesadillas, tostadas and empanadas, and was more than enough to fill us before we reached our final destination for the day. I was impressed with their gluten-free menu, which explains that there are a mix of dishes available, some that are completely gluten-free, whilst others are suitable for those with a gluten intolerance. G pondered the menu for a long time and struggled to reach a decision, not least because so many of the dishes include dairy as well as a spiciness that she would prefer to avoid. In the end, she actually ordered from the Kids menu, where she could have grilled chicken in soft corn tortillas. There were a few too many vegetables adorning her plate for her liking, but she did eat the rest in fairly quick fashion.

Our new approach to food challenges means that M can occasionally add an extra into his dish and I had my fingers crossed that we might be able to combine a little onion to his meal to add some flavour, but unfortunately their green rice included vegetable stock and garlic as well,
which would definitely be a step too far at the moment. After a lengthy discussion with the restaurant manager, M opted for a double portion of grilled chicken, cucumber and apple, all washed down with a Virgin Mojito, although the last didn’t quite hit the mark. Our meal was nicely finished with a dairy-free hot chocolate for G and a coffee for me. We were once again disappointed by the lack of choice when it came to dessert and instead decided to give it a miss and head on to our final destination.

Dinner done, it was off to the Cardiff Motorpoint Arena for 100 years of Magic marked by Disney On Ice with one very excited young lady and a slightly less certain younger brother. G has been desperate to go to see Disney on Ice for a long time and the evening really was fantastic as she loved every moment of it. Despite his initial reservations, M was equally spellbound, even during the lengthy part dedicated to the story of Frozen. From everybody’s favourites, Mickey and Minnie Mouse, to Tiana and Prince Naveen from modern classic, The Princess and the Frog, there was more than enough to keep everyone entertained. The skating was superb, the spectacle fantastic and the songs had many in the audience clapping and singing along. G didn’t stop smiling the whole evening and it really was a Christmas present worth waiting for without a doubt.

 

You know you’re an Allergy Mum when…

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I often flick through those “You know you’re a…” memes and have a quiet giggle to myself. I love the funny images that reflect the reality of a certain situation and I’m happy to admit that I do have a sense of humour about the jokes that poke gentle fun at the world’s response to the seemingly meteoric rise in food allergies in the past few years. In my opinion, and I willingly accept there will be many who don’t agree with me, life’s too short to not be able to laugh a little and find humour in what can be incredibly challenging situations. I know how difficult life with allergies can be and that ability to smile in the face of adversity is often what gets me through the hardest of times.

The truth is that when you’re an allergy parent you never really get the day off, which is why I found myself having to write this post in the midst of relaying tales of our recent trip to New York. It was a holiday to celebrate my milestone birthday and yet, just as I did when we had our short trip to Italy last year, I found myself snapping photos right, left and centre img_3430whenever I came across any food or drink that would be suitable for either of the children. The thing is that for once in my life I wasn’t actively looking for safe food options, but the discovery of that first gluten-free sandwich triggered a level of excitement that would be completely incomprehensible to anyone other than those walking the very same journey that we do. And no sooner had I discovered that first little gem, than I started looking everywhere to see just how well G and M would be catered for should we find ourselves in the Big Apple in the next few years.

Our trip to see the most well-known lady of the USA was also the site of this unexpected windfall in meeting dietary requirements. Having climbed our way to the top of the Statue of Liberty, we headed on to Ellis Island, where we decided to stop for lunch before exploring everything on offer in this former immigration inspection station. We had opted for a burger each as it was a cold and wintry February day and whilst Mike was placing our order at the counter, I took to the fridges to pick out our drinks. img_1449There, nestling amongst the other cold food options available, was this amazing gluten-free ham and swiss cheese roll and I was so impressed that I just had to take a snap. I’ve commented so many times on how difficult it can be to locate the gluten-free offering in cafes and coffee shops in the UK, so to discover this one so prominently on display and clearly labelled was just fantastic. Obviously, I really can’t comment on whether it tasted good or not, though I can assure you that the burgers Mike and I had were delicious, but to even have the option so readily available was a real breath of fresh air.

From that point on, my eagerness to see what other allergy-friendly offerings were available was back to its normal level and whilst I didn’t actively seek out restaurants that could serve freefrom alternatives, I kept my Allergy Mum eagle eyes on red alert to see what I could spot on our travels around this vibrant city. Our quick stop at Eataly to find a drink and small snack after a long afternoon at the 9/11 Memorial museum revealed some sheep’s milk and cheese for those looking for dairy-free alternatives, but disappointingly we couldn’t spot any of the gluten-free goodies we had unearthed on our Italian trip last year.

I didn’t spot many allergy-friendly menu items as we ate out in several of the many restaurants on offer, but we were delighted to spot a couple of gluten-free options at what was, without a doubt, my favourite restaurant of the trip. The fantastic Ellen’s Stardust Diner is a 50s themed diner that combines classic all-American dishes with amazing live entertainment. As you sit to enjoy your meal, you are serenaded by your talented waiter or waitress and their fellow servers. The staff members are all looking to break onto Broadway whilst working at the diner, which understands not only their need to supplement their income and take further performance classes, but also allows them to accept those last-minute audition opportunities whenever they appear. The food is good, but it’s the staff who really make this a dining experience like no other. Discovering a couple of gluten-free meals was a real treat, though I’m not sure they could really cater for the more complicated needs of a certain young member of our household.

However, our best finds came on a very wet, grey and miserable Monday afternoon as we trudged across the city towards the Intrepid Sea, Air & Space Museum. We needed to grab a light lunch before we reached our final destination and, as Mike had been hankering for a proper bagel New York-style, stopped at 2 unassuming locations to find what we had been looking for. As well as eventually finding a great deli serving some delicious lunch foods, we also discovered a veritable Aladdin’s cave of freefrom goodies. From the unbelievable number of allergy-friendly cereals, bread, frozen foods and milks on sale at the impressively named Food Emporium on West 43rd Street and the added delights of camel milk and coconut or almond milk ice cream at Sunac Natural Market on West 42nd Street, there was enough to satisfy the cravings of even the pickiest of allergy tourists. There may not have been a huge variety of options for M, but we did find some great and different types of rice for him and I know G would have been hard pressed to choose from the wide selection of gluten- and dairy-free foods that we found between these 2 great spots.

And so, in the tradition of all those Allergy parent memes that are out there….

You know you’re an Allergy Mum when your holiday photo album looks like this!

 

I scream…

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Ice cream: that perennial favourite of children everywhere. What image does ice cream conjure up for you? Summer sun and beach holidays? Bowls of jelly and ice cream at birthday parties? The necessary accompaniment to just about every dessert you can think of, from apple crumble to treacle tart and, if you’re British, the 99 – vanilla soft-whip ice cream in a cone and topped with a chocolate flake. Mmm, my mouth is watering just thinking of it.

For M, ice cream has been the one pudding he has missed most in the 2 years since he went elemental and it has taken a painfully long time to find and adapt a recipe to make the perfect M-friendly alternative to this popular frozen treat. I have long had an ice-cream maker as part of my essential bits of kitchen equipment as once M had gone MEWS-free, I quickly realised that the simplest way to find a dairy- and soya-free ice cream was to make my own. img_13421M and I are also big fans of sorbet and we have enjoyed some deliciously indulgent home-made lemon, orange or raspberry sorbet over the years. I even attempted a wine sorbet, thanks to the recipe book that came with my machine, but it was a disappointing disaster that really couldn’t be saved.

Over the last couple of years, I have tried an apple sorbet for him, but M was less than impressed and I struggled to get the consistency right as the sorbet failed to “set”. Since the summer, I have been determined to find a way to successfully make a safe vanilla ice cream and finally found a simple, vegan recipe with just a handful of ingredients that I knew I could easily replace. The discovery of a palatable rice cream last year was the key to my success and I shut myself into the kitchen in the lead up to Christmas in order to perfect my recipe in time for the festive period.

I struck gold in that very first attempt and I was delighted with just how close to the “real” thing this version came. M and G were absolutely thrilled with that first bowl of vanilla ice cream and it’s been a good alternative for Mike too, who is unable to eat a bowlful of dairy ice cream without suffering the consequences. I love being able to whip up this easy dessert in less than an hour and know that it will continue to be a favourite for a long time to come!16830691_10154166034751123_1184328170820370385_n

*Interesting piece of trivia – the song “I scream, You scream, We all scream for ice cream” was a popular song first recorded in 1927 as a novelty song, before becoming a jazz standard and part of popular culture!

Impractical Jokers – Birmingham 2017

The last month or so has been filled with an unusual number of opportunities for Mike and me to take a little time off from our jam-packed lives at home and have some much-needed time to relax, rejuvenate and re-find ourselves as a couple. We’ve been fortunate that, just as she did last June when we enjoyed my surprise holiday win to Italy, my Mum was willing to take charge of G and M for the duration and we’ve been celebrating our 40th birthdays in style. Our first treat involved a road trip to Birmingham, an overnight stay near the Barclaycard Arena (previously the National Indoor Arena) and an evening spent laughing, courtesy of the tickets I had bought for Mike as part of his 40th birthday present.

img_13471Just over a year ago we discovered the American hit comedy show, Impractical Jokers and have spent many hours curled up in front of the TV, often with the children added to the mix too, giggling and guffawing at the escapades we’ve watched unfold in front of our eyes. For those of you who have never heard of the Impractical Jokers, this hidden camera show follows 4 childhood friends from Staten Island, Sal, Joe, Murr and Q, as they play a series of practical jokes on each other and the unsuspecting general public. In a hyped-up version of “Truth or Dare”, they challenge each other to complete a string of ridiculous tasks, knowing that failure to complete or achieve the goal will result in the biggest loser of that episode having to undergo a punishment at the hands of their friends.

The Jokers usually do not know the details of the pranks until the moment they have to do them and are often pushed to say and do things that are well beyond most people’s normal comfort zones. From saying outrageous comments when serving customers at one of the many stores, fast food joints or cafes featured from New York, to having to convince strangers that they have met before in the most unbelievable set of circumstances, the pranks nearly always have us all laughing out loud. I’d be hard-pushed to say which part of each show we most enjoy, but the final punishments are almost always as funny as the pranks themselves and go from the sublime to the ridiculous. img_13531In many ways, it’s seeing the response that adds to the humour of the situation. My Mum freely admits that she can’t see what makes us laugh so much and perhaps it’s true you require a certain quirky sense of humour to enjoy the half-hour episodes.

Having missed out on tickets for their first UK tour in February 2016, I was determined to get some for January 2017 and was delighted when I managed to secure 2 great seats at the Birmingham Barclaycard Arena. It took some strategic planning with my Mum – well, I had to check she’d be in the country to look after G and M for the night! – but we got there in the end and I even managed to keep it a secret until the big reveal on Mike’s birthday in October. M was not so impressed with our planned night out, but Mike was as thrilled as I was and the time just flew past until we found ourselves taking an afternoon off from work and bombing down the motorway towards our final destination. We found a great place to stay – City Nites Serviced Apartments – within walking distance of the Arena that included a secure location to park the car and enjoyed a delicious dinner at Thai Edge before the show itself started.

We were hoping for a great night out and weren’t disappointed. The Jokers, also known as The Tenderloins comedy troupe, have been performing stand-up for years and their show was filled with a skillful mix of scripted jokes, some improv and the inevitable reveal of previously unseen clips from their successful TV show. I’ll be honest, a few long days and nights on UK tour had obviously taken their toll on all their voices and a heavy drinking session meant that one member of the group in particular was not as sharp as he usually is on-screen, but my favourites, Sal and Joe, were in fantastic form and made the night for me. Mike loved being at yet another live comedy show, having already enjoyed seeing Josh Widdicombe and Dave Gorman for previous birthday treats. It was a brilliant overnight break from the children and one that we both needed after the medical stresses that had stalked us at the end of last year.c2dvr6txeaan_op

Beating the Blues

Today is Blue Monday, the day predicted to be the gloomiest day of the year due to bad weather, the stark reality of our Christmas over-indulgence now affecting our dwindling bank accounts, the post-Christmas buzz that has completely disappeared from the horizon and our well-meant resolutions that are proving far harder to keep than we ever imagined. There are some New Year resolutions that you know will be difficult to keep beyond the first few days – abstinence springs instantly to mind – and then there are those that will never, could never be a challenge, but rather are an absolute pleasure to complete. Last year gave our family 2 amazing opportunities, experiences that were so life-changing, so extraordinary for both children and so liberating for us all that I knew that one resolution that I would not fail to meet was to write a post to not only recapture what are amongst my most favourite memories of 2016, but to also encourage others to get involved with what is a truly inspirational organisation.

9a78a65173e2885ea3a8c8b9d3ccd1acThanks to the amazing charity, Over The Wall, last year both G and M were able to escape from the reality that is their life at home coping with chronic illness and find a world where nothing could hold them back or stop them from achieving what might have previously seemed to have been impossible. G discovered a group of friends who could understand completely what life can be like when you have a sibling with serious health issues, but who got to know the unique, kind-hearted, gentle-spirited and passionate girl she can be in her own right and not simply as “M’s big sister“. Her confidence grew as she responded to the love, focus and encouragement that was given to her throughout her week away and she found a new and irreplaceable identity as a valuable member of last year’s Purple Girls at the South Siblings camp. Likewise, just a few months later, M was able to experience, for the first time ever, a week away from family, where he got to be as carefree a child as his school-mates are and could try out a whole host of new activities, confident and safe in the knowledge that his medical needs were being well-managed by the volunteer team surrounding him and he just needed to concentrate on having fun. Their time away from home taught them both that there is more to them than EGID and food allergies: Over The Wall truly gave my children wings to help them soar.

So, why write once again about the extraordinary adventure that is Over The Wall? Well, with a New Year comes new opportunities and you don’t have to have a child living with a chronic illness to be able to become involved with this organisation:

  • Application forms are currently open for places on the 2017 camps and be it the Siblings, Health Challenges or Family camp that meets your needs, now is the time to register your interest and find out if you can secure a place. Both children are glad to know that their forms have been completed and sent off, and it’s just a case of waiting to see if they’re back to the camp bubble this year
  • These camps depend heavily on the huge amount of time given to them by their team of dedicated volunteers. If you’re interested in volunteering your time and helping make a difference to young people impacted by health problems, volunteer applications are also now open. The medical team who willingly give their time are unquestionably invaluable, but whatever your skills, know that your presence will undoubtedly make a difference to the children that are there
  • OTW offer these camps free to those families who attend and to be able to keep doing what they do and successfully reach out to even more young people, they need your help in raising funds. As a family we decided to focus our fundraising efforts last year on OTW and will continue to do so for 2017. Thank you so much if you helped us make a difference in 2016. Cake sales, sky-diving, shaving your head or running a marathon – whatever your interest, please consider supporting this charity by raising sponsorship or making a donation

And just in case you needed a reason to support and spread the news about Over The Wall, here’s a few photos that capture the magic that transformed the lives of G and M in unimaginable ways in 2016.

Looking ahead

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The start of a New Year is always an opportunity to reflect on the things that have passed, but more importantly, to look ahead to the adventures that are yet to come. We had a 2016 filled with as many highs and lows as we’ve faced in previous years and I don’t doubt that 2017 will be equally challenging in ways that are both startlingly similar and scarily new. I’m looking forward to a year that will investigate new possibilities for M’s diet and seek potential answers for what’s going on in his body as well as watching as G tries out new opportunities and starts thinking ahead to the school subjects she wants to study for GCSEs – a conversation that has filled our end-of-holidays walk this afternoon. We don’t know exactly what this year will bring, but it’s always good to look back on everything that has brought us to this place:

Giving something back

23567358210_2327dd548d_mAs we counted down the days to Christmas within the confines of GOSH last year, one of the seasonal highlights for both M and me was the carol-singers that we encountered during our stay. Hearing the gentle strains of familiar carols outside the main entrance, within the beautiful chapel and along the hospital corridors helped us feel a part of the excitement building in the outside world, even though M was ward-bound for so much of the time. I was fortunate enough to be able to go to the Carols by Candlelight service at St. George’s Holborn, a church just across the road from the hospital itself 23104290053_5ffd34741a_zand M, Mike and I had great fun another evening joining the choir from All Souls Church, Langham Place as they sang their way around GOSH, serenading patients with their cheerful Christmas singing.

Knowing how much those experiences lifted our spirits during a difficult and emotional time away from home, I leapt at an opportunity this year to give a little back. One of the choirs I sing with was invited to spend an afternoon singing carols and Christmas songs at a regional Children’s Hospice, whilst one of the local football teams delivered presents and spent time talking to current patients and their families. It had been an occasion that I’d been hoping to take part in last year, so as soon as I heard we were invited back this year, I knew that I just had to be a part of it if at all possible.

img_13021Yesterday was that day and what a truly magical experience it was. A small group of just 9 of us gathered and spent the afternoon singing carols and Christmas songs to the children and their families, who are so dependent on this Hospice to provide some precious moments of respite during the year. I took the opportunity during our visit to speak to staff members, parents and even some of the children themselves and gleaned just a small insight into how important this Hospice is to them all. There were no tears yesterday; just a celebration of the individuals gathered in those rooms and an opportunity to make memories that will last a lifetime. When favourite songs were requested, we gladly sang them to bring a little extra cheer to what was already an amazing party. I gently persuaded – ok, 15578155_10154311119488790_2228089488536286007_operhaps, more honestly, I coerced with a cheerful smile and a little Christmas spirit – some of the footballers to join us for a rousing rendition of “The Twelve Days of Christmas”, which ended with friends, family and staff also singing along and sharing in the joy of that moment.

We received thanks for our attendance again this year, but the truth is that we received from the experience far more than we gave. It was a huge honour to be able to be even a small part of a fantastic event and, for me, a real opportunity to give something back to families that are living through a reality that reminded me just how lucky our family truly is. Not everybody can sing; not everybody will be able to offer practical help, but if you can find a way to #givesomethingback this Christmas season and beyond, please do.

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The Best Eateries in the Country

FFEOA 16 200X200Last week saw the third annual Food Matters Live event being held at ExCel, London. This event, which brings together hundreds of visitors, exhibitors, speakers and organisations from across the food and drink industry, aims to “…enable collaboration and innovation to support a sustainable food landscape for the future…” as well as encouraging cross-sector discussion and collaboration. I had first heard about it during the FreeFrom Foods Awards and was keen to attend if at all possible. Unfortunately, the necessary childcare arrangements just couldn’t be worked out to allow me to attend the 3-day event, but I did take some time to follow what was happening via some very active Twitter feeds. Tuesday afternoon was of particular interest as the winners of the FreeFrom Eating Out Awards 2016 (#FFEOA16) were being announced live at the event and fortunately coincided almost perfectly with the hour I spend sitting outside of M’s lesson at the Dyslexia centre, allowing me to focus on my Twitter feed to see the results as they happened.

Earlier this year I wrote about the launch of the 2016 FFEOA and the exciting news that Executive Chef, Dominic Teague of Indigo at One Alwych had won the first ever Pathfinder Award given to those who have “…really thought outside of the conventional freefrom box…”. Dominic not only accepted his award on the day, but then also took on the role of presenting the awards to all those worthy winners. When you look through the list of winners, goldstarsit becomes immediately obvious that there have been huge strides forward in the realm of catering for those with allergies and it was amazing to see so many fantastic food service providers from across the UK on the list.

I was delighted to see that each of the awards category was hotly contended and included well-known names such as Wetherspoons, CentreParcs and the Rainforest Café amongst its success stories*. These are places we haven’t yet dared to venture with M and his restricted diet, but will definitely consider visiting in the future when we’re in the vicinity. We were also thrilled to see some of our personal favourites winning well-deserved accolades including M’s all-time favourite, Borough 22 and our newest discovery, Café Nouveau in Frome. It was also good to spot the odd recommendation within reasonable driving distance and we’re already planning when we might be able to make some visits and try the freefrom offerings out for ourselves.

14650222_315615772146548_6413808020440687219_nThe overall winner was the Labyrinth Holistic Café, a community café found in Stockton-on-Tees. It is run as a not-for-profit community enterprise and is keen to welcome everyone, from all walks of life and no matter what their diet. The reviews given by some of the FFEOA16 judges commended the extensive menu, amazing fresh food and attention to detail that led to it being given the highest recognition.

Next year’s Food Matters Live conference is being held from November 21-23 2017 and I’ve already pencilled it into my diary as a must-do event for my year.

*a full list of winners can be found by following this link

From all angles

The last few months have been busy ones in all areas of our life, which I haven’t been shy in talking about, but the one aspect that I haven’t mentioned for quite some time is where we are health-wise with M’s EGID. You could view the reason for the radio silence as a good one – we haven’t really been making any significant progress and everyday continues to be a battle to see if we can reach and maintain some semblance of status quo for a decent length of time. I’ll be honest, since March things have been quite challenging as we have had little medical support and we have felt, at times, as if we’ve been cut loose and are paddling desperately to make some headway by ourselves. The reason for the missing input is that we are in the process of trying to build a shared care relationship between GOSH and our local hospital once again and at long last do appear to be making bmd6e7zcyaef7disome progress, albeit very slowly. We last saw M’s GOSH consultant in the middle of March, when it was somewhat reluctantly agreed by us that we would wait until November for his next GOSH appointment with the plan being that we would meet and then have an appointment with our local gastro team during the interim period.

It may well come as something of a surprise that we are even considering transferring some of M’s gastro care back to our local given the  numerous problems we’ve had in the past, but this time we were encouraged by the fact that his new gastro consultant is a registrar that we got to know whilst at GOSH and someone we trust implicitly when it comes to M and his health. Dr W, who has invited us and M to be on a first-name basis with him, was instrumental in getting M admitted 2 years ago when we made the decision to move to elemental feeding and so is someone who knows something of M’s background and understands where we, as his parents, stand when it comes to treating this disease. We are also keen to gain some local support for M because, when crisis hits, it is very difficult to get any immediate care from GOSH due to the distance we live from the hospital and the inability to just pop along there for them to review his current state of health. There is a standing agreement that we can phone and discuss him with any one of his consultant’s team, but sometimes that isn’t enough to resolve the issue as quickly as we all need. supportDr W had already agreed with GOSH that he was happy to meet with us and look at the potential possibility of taking over some of M’s care during last year’s disastrous admission and he understands that there is a trust issue between us and our local hospital that he and his team will need to work hard to re-establish – something that is so critical to M’s well-being.

With a little prodding, it didn’t take too long for Dr W to give me a call and then for an initial appointment to arrive on our doormat and Mike, M and I met with them in the middle of June. At this point, M’s broken leg had unleashed an unexpected level of havoc on his body and we were struggling to manage the ever-fluctuating bowel issues as well as his increasing reluctance to drink the E028 and huge disappointment that we couldn’t undertake any food trials whilst he was so unstable. The team was great, but it really was just a conversation about what we were looking for and what they felt they could do for us. A few interesting insights and suggestions about M’s diagnosis were thrown out, but there was no opportunity to ask questions about them and now, 3 months on, our reflections have left us wondering about what the next steps will be. What didn’t come as a surprise was the question mark over whether M is truly suffering from so many genuine food allergies or rather if there is an underlying problem with his gut and/or bowels which means that he is unable to tolerate so many foods at the moment. This has been a question that has been stumping his GOSH dietician too, who has freely admitted to finding M one of her most challenging patients ever and is hoping our local will provide a fresh pair of eyes when it comes to considering how best to treat him. Dr W also expressed a concern that 20150203_082342M would eventually stop drinking the E028 altogether and stressed that we need to find a viable alternative before we reach that point. This has proved to be remarkably insightful as it is now one of the biggest issues that we have had to contend with since that June appointment, with M struggling to drink even half of the required amount and with no new foods in his diet, there are growing concerns about both his weight and his nutritional intake.

Just before our Portuguese holiday, I contacted our GOSH dietician to discuss with her the lack of progress we’ve been making with M and asking for her input as to what we should do next. The email reply I had came as something of a concern as she explained she was under the impression that all care had been moved to our local hospital and she was surprised that I was looking to have a further conversation with her. I fired off a considered response, copying in both the GOSH and local consultants, advising that whilst we had met with the local gastro team in June, we had heard absolutely nothing since and really needed some medical advice once September started, although somewhat ironically we have had our next GOSH appointment booked – September 2017! Thankfully the strong relationship we have built up with this dietician since M first went to GOSH 5 years ago meant that S was happy to step in and gave me a call just a few days into September. She was as concerned as I was about the lack of medical care being given to M at the moment and during that lengthy phone conversation, worked with me to put a plan into place for food trials over the next 4-6 weeks. She also offered to chase both Dr W and our GOSH consultant to find out what was happening regarding the transfer of M’s care and try and speed up the process to ensure that M is seen before November if at all possible. I’m not quite sure what strings she pulled, but within a week of speaking to S, Mike received a phone-call from Dr W to tell him that a plan had been agreed between the two hospitals and an appointment would soon be forthcoming. Delighted to hear that a plan would soon be put in place, Mike asked whether we could be privy to the discussion they had had, so that we too were on board with whatever next steps they were expecting to make. Another lengthy conversation later and at long last, we finally had some idea of how M’s care will be handled until the end of the year at least.

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The most critical aspect of looking after M right now is that no-one really understands what is going on with his body, his bowels and gut in particular, and there doesn’t appear to be any logical explanation why we seem to be stuck at just 5 safe foods. Add to that the added complications of the massive downturn in his health that happened as a result of his broken leg and the resulting failure to find ourselves in as good a position as we were a year ago, the medics all agree that they are more than a little stumped. So, rather than rush into more tests or a radically changed approach to his treatment, our local gastro team have booked monthly appointments for the next 3 months, where they will be assessing and observing him without getting too involved in the medical decisions. Obviously any problems that we do encounter during that time will be addressed, they won’t leave M to suffer unnecessarily, but they are leaving us to work with GOSH in terms of his food challenges and medicine tweaks. They have also recognised the need for psychological support, not just for M, but for the whole family and are proposing that we start with weekly appointments, split into fortnightly appointments for M and the alternate weeks for Mike and me. We have long argued that the diagnosis of his EGID has a huge psychological and emotional impact on M and have frequently seen the outpouring of that in the home environment. The added stress of his SATs this year is already showing at both home and at school and so I am hopeful that with these regular sessions in place and the support of us and his teacher, we will ensure he makes his way through Year 6 relatively unscathed. With this kind of all-encompassing care in place and the availability of local support for any admissions or longer term treatment changes that might be needed, the strain on the family will hopefully be reduced a little too, although it will obviously never fully disappear. We don’t know what the future holds for M and that is the most daunting thing we have to face as a family. What is encouraging is that there is already an open dialogue between some of the many people involved in M’s day-to-day care and our hope is that can only prove to be the best thing for him.