Category Archives: EGID

A Survival Guide For School & Allergies

The end of August always seems to be something of a surprise in our household. We arrive home from our holiday feeling relaxed and calm and then almost immediately face a madcap race to reach the finish line of shoes bought, uniform named, PE kits found and bags packed before school starts. In years past I have also had to make sure provisions are packed, discussions had and medical notes updated for M, but, for the first time ever, this year I wasn’t trying to squeeze in a critical meeting alongside my own new start with a new job. img_11331I know that next year when M moves up to our local secondary school it will be a very different picture, but after 3 years of working with the teaching community at our junior school, and with no major changes to contend with, M was able to start in Year 6 without this over-anxious Mum hovering in the background.

Without a doubt we have been incredibly lucky with the amazing support given by the fantastic teaching staff at our local school, but we have also had more than our fair share of bad experiences and teachers who don’t care in the past and I can well remember the anxieties and hours of meticulous planning that heralded the start of every new school year. The novelty of not having to head into the classroom before the end of M’s first week back has still not worn off and I’m certain that it’s thanks to the hard work that’s been put in on all sides to formulate strategies that meet M’s needs and to develop a strong working relationship between home and school that is reliant on open communication that flows both ways.

Over the last few weeks, there’s be a lot of chatter in the online allergy community about the fears that surround the milestone of starting school and, with over 8 years of “parenting-a-school-child-with-allergies” experience under my belt, I’ve been asked what tips I would give to any parent facing this situation for the first time. In all honesty, M’s first few years at school were difficult and certainly not the positive experience we would have liked. We had to deal with a SENCo, who trivialised his allergies because they “…wouldn’t have to call 999 if he ate something he shouldn’t…” and refused to recognise how important it was to communicate his allergies and health issues to any member of staff dealing with him and not just his class teacher, which led to numerous occasions of him being offered food he couldn’t eat. His teachers lost their focus in teaching him because they felt he already had a lot to cope with with his regular appointments at GOSH and his education suffered as speech impediments, dyslexia and dyspraxia were missed by those who worked with him on a day-to-day basis.

Fast-forward to the start of Year 3 and all our negative experiences became a thing of the past. The year actually began at the end of Year 2, when I met with the Head, SENCo and class teacher of his new school to discuss all of M’s health and educational needs and worked with them to put practical solutions into place before the term started. They understood the value of seeing him as more than just his EGID and food allergies, circle-timebut also knew that his health problems were a big part of his everyday life and couldn’t be ignored. At the end of his first week there, M’s teacher held a circle time in class where she shared about M’s ill-health and restricted diet with his classmates. It was done in such a nurturing and non-confrontational manner that by the end of the session M was willing to answer any question that his new friends had about what they had been told himself and has being doing so ever since.

fabed1The information sheets that I had provided were given to the teachers and, combined with the notes they had taken whilst talking with me, used to draw up a healthcare plan for M that covered all possible situations. His on-going bowel control problems were sensitively handled and a contingency plan put in place to ensure that he always has access to a toilet wherever he is in the school. The HCP was written by the school SENCo and then sent home for my review before being published, shared with the whole teaching team and displayed prominently in the staff-room. Even better, every year since then I have been asked to review and amend his HCP to reflect any medical changes that have happened and the school continue to be sympathetic to his needs.

SAM_1175As for his swap box, it has proved to be an invaluable tool in the classroom setting and is something that is really easy to implement. The idea behind the swap box is a simple one – it contains a selection of safe items, be they edible or non-edible, that can be swapped for those unexpected treats that sometimes come into the classroom to celebrate birthdays or other special events. When M’s swap box came into being, it was filled with a mix of Haribo sweets and the odd Lego minifigure and the choice was his as to what he chose to take. Since going elemental 2 years ago, the box now contains Lego, trading cards and other fun small toys and ensures that M never feels that he is missing out when his friends celebrate. What’s more, his teachers have taken inspiration from it for their own purchases of small gifts at Christmas or the end of term and given him something he can enjoy.

I think the biggest secret to our great experience with our Junior school is communication. The lines of communication are always open and actively work in both directions between home and school through meetings, phone calls, e-mails and the home/school book. The willingness of so many of the school staff to learn to support M to the best of their ability has created a level of trust unlike any other and means that I am ea544311f5697d6334b2df7079ccedf9happy to leave M in their more than capable hands on a daily basis. It is a testament to their dedication to their work that, in the last 3 years, the only things that have caused an extended absence from school have been the annual hospital admissions at GOSH. They have always endeavoured to make sure that M is safe whilst at school and the fact that he was able to attend as normal with both his NG feeding tube and his broken leg is incredible. A truly remarkable relationship has grown over the years between our family and so many of the teachers and is something I really value.

They have also nurtured and encouraged M to talk about his allergies and EGID and have shown continued support as he has become an advocate for educating others about his illness. M has held cake sales, run playground games and created short films explaining the impact his diagnosis has on his life. He has developed a confidence in talking to others and 18 months ago was able to answer the questions asked by members of home-school-connectionevery class in the school. When he left his Infants school, he was a child reluctant to talk about his food allergies or hospital appointments because he was scared of being isolated and bullied because of how different he was to everyone else. These days he has an incredibly strong friendship group who look out for him during school hours and think about him when he’s had to be in hospital, and he never thinks twice to share what’s going on with his friends.

If I had to sum it up, I guess I would say this:

Be open, be honest, be available. Keep communicating and tell them how they can make it better if you need to. Do what you can to help them out and don’t forget to say thank you when they get it right.

When September arrives

img_11331September can really only mean one thing: the start of the new school year and all that that entails. This year it has been just that little bit more hectic than usual as some things have changed significantly, whilst others have remained strangely static. G has moved up into Year 8 and is already embracing the addition of 3 new subjects to her timetable,very much enjoying the extra lessons of French, Dance and Drama as well as the move from Food and Textiles to Product Design. With the new school year, so there is also a new school uniform and whilst G is still a little sceptical about its appeal, I am delighted with how smart she looks, though only time will tell if that will last for the full year or not. M is at the start of the final year of his Junior school career and I still can’t quite believe that my baby is  now one of the oldest in the school. We know that this year will be full of challenges from an educational point of view, but with the continued support of his teachers at school and a full year of specialist lessons at our local Dyslexia centre, we are confident that he will be able to achieve his very best.

This September has also signified some major decisions about my own career after I was made redundant out of the blue at the end of the last school year. I am incredibly fortunate that my accountancy training meant that I was offered a new job within a remarkably short time-frame and I started that position the week before the children headed back to school. I felt encouraged by my new role and yet the last 2 weeks IMG_0743[1]have been filled with unexpected angst as one of the other positions I had applied for requested an interview and then offered me the job. After hours of deliberation and discussion and numerous sleepless nights, I have decided to accept this second role as it is an incredibly exciting and challenging position that I believe I would regret turning down. I am really looking forward to starting this new job at the beginning of October, which will bring some significant changes to our household as I will be back to working full-time hours for the first time since G was born, although I am lucky that they are happy to give me flexible hours and everything I need to sometimes work at home.

img_11381September has also been the month where we enjoyed a flying visit from Grandma and Grandpa, Mike’s parents, from Canada. G and M were so excited to see their grandparents for the first time in 4 years that they created a banner to welcome them when we went to collect them from our local airport. img_11431Mike finally finished the renovation job on our 4th bedroom, a task that had been started back in April,
but was interrupted first by the whole saga of M’s broken leg and then the demands of work and our summer holiday in Portugal. The room looks great, but his parents never got to sleep there as Mike had a last-minute panic that the futon bed might be too low for them and instead they slept in G’s room, whilst our gorgeous girlie moved to the freshly painted spare room for a few days. G, M and I all had to be at school and work as normal, but Mike spent some precious time with his parents before they returned home. It was a busy few days for us all, but we managed to squeeze in some family meals and board games where we could.

In the midst of all that busyness, there is one thing that has remained relatively static and that is the current position with M’s health, a real mixed blessing. The last year has been filled with numerous food trials, including during our disastrous admission at GOSH last December, but M is still stuck at just 5 safe foods and despite our hopes to start challenging him again soon, he is not even close to being symptom-free, something we’ve been striving for since his leg came out of plaster at the start of the summer. We are surviving in limbo with minimal medical input as the plan to start some shared gastro care with our local hospital has not yet materialised and we are not due back to GOSH for another couple of months. It is very difficult to see where the next few months will take us, particularly when you add in the added stresses of his Year 6 SATs, and so Mike and I are hoping for the best, but preparing for a bumpy ride.

Rice Two-Ways

When we made the decision to go elemental in an attempt to bring about a reduction in M’s chronic symptoms, I never imagined that the reintroduction of foods would be as fraught and intensely stressful as it has proved to be. In the past 12 months we have made absolutely no progress whatsoever and everyone is stumped about what the root cause of M’s problems actually is, with opinions fluctuating between complications from his EC, “simple” multiple allergies or a physiological problem with his gut. Whilst the teams of medical professionals involved in M’s care try to decide on what direction they should follow next, I’m left stretching my ingenuity to its very limits when it comes to preparing meals for my understandably fed up 10-year-old.

mixed_rice

I’m constantly on the search for anything that will make my cooking life that tiny bit easier and a lot more interesting and love finding products that are both M-friendly and a little out of the ordinary. Like many of you I’ve eaten rice for years, but generally just as boiled rice to go with a tasty chilli con carne or egg fried from the local Chinese takeaway and had never really thought much about it. Since rice has become the staple carbohydrate of M’s diet, I’ve come to love the versatility of this ingredient and continue to be delighted by the many versions of it I’ve uncovered along the way. Rice milk, rice porridge flakes, rice cereal, rice flour, rice crackers, rice noodles, rice pasta, rice vinegar and your choice of plain rice: long grain, brown, basmati, wild or black have an overwhelming presence in my kitchen cupboards and so now do 2 rice-based products that I’ve discovered over the summer.

img_08441First are Blue Dragon Spring Roll Wrappers, which do contain a small amount of tapioca starch, but are predominantly made from rice flour. Having recently perfected my own version of lemon chicken to satisfy M’s longing for some much-missed Chinese food, these seemed like a great addition to the repertoire and I couldn’t wait to make both M and G some M-friendly pancake rolls for dinner. If you’ve never attempted to cook with these before, let me tell you that they are not the easiest ingredient to use, but I suspect that a lot more practice will make a big difference. I set up my workspace next to the kettle, filled a shallow baking dish with boiling water and then painstakingly soaked the wrappers, 1 sheet at a time, before filling them with some thinly sliced chicken, cucumber, apple and pear that I had already prepared. img_08461I cooked them in 2 different ways, interested to see which my discerning duo preferred and was very much surprised by the results when they came in. G loved the bigger roll which was just prepared as I described above, whilst M told me he’d opt for the shallow-fried triangles every time. I am thrilled that the wrappers were so well received by both children and can’t wait to see what else I can cook with them as I’m sure that they are versatile enough to be used to create some sweet treats as well as the more traditional savoury dishes.

img_11031The other is a real store cupboard essential and I can’t begin to tell you how excited I was to discover this item when I was perusing the virtual aisles of the fantastic online supermarket that is the FreeFromMarket. As for when the box of Clearspring Brown Rice Breadcrumbs arrived, nestled in the midst of my other purchases, well, Mike and the children were all summoned by my squeals of joy and then left me to my celebrations, shaking their heads sadly in complete disbelief. I am sure that there are so many ways to use the breadcrumbs in my cooking, but I started by preparing a breaded, stuffed chicken breast along the lines of a more traditional chicken kiev. I made a coconut oil and herb mix, which I carefully squeezed inside the cut I’d made in the chicken breast, before coating it liberally with the breadcrumbs. 25 minutes later and img_11091dinner was ready with a golden brown chicken breast tantalising the taste buds with both its look and its smell. They really were delicious and neither child was very willing to sacrifice a mouthful of their meal for Mum to taste-test herself. Now that the summer holidays are over and we’re heading into the autumn, roast dinners will make a more regular appearance in our household and I’m hoping to use these breadcrumbs to create an M-friendly stuffing for us all to enjoy.

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Hard Rock Cafe, Lisboa

Dinner out on our first evening in Lisbon was not as easy as we might have hoped and, in some ways, encapsulated our worst fears. By the time we had made our way from the airport to our hotel, we didn’t really want to hunt around with two tired children in tow, so simply headed to a local restaurant with our fingers tightly crossed and our recently acquired Yellow Cross translation cards clutched in my hands. IMG_0904[1]We found a restaurant that looked promising as it had grilled chicken and rice on the menu and sat down to peruse the choices for the rest of the family until it came time to order, when I handed over the cards and waited to hear their response.  The cards did their job, but whilst the restaurant staff were incredibly helpful in trying to provide safe food, poor M ended up with just a plate of plain boiled rice and an apple. At that point my Mum vowed that she couldn’t face another dinner out like that and so the search began for somewhere that could cater much better for M’s particular needs.

Lisbon_EntranceAs a long-time fan of the Hard Rock Cafe, I had been delighted to discover a couple of weeks before we travelled that there was one in Lisbon and had even managed to find a copy of their menu, including allergens, on-line. My e-mail enquiry about their ability to cater for M had gone unanswered, but I felt confident that there was a good chance they would be able to cook him some safe chicken at very least and so we headed there for our second meal in Lisbon. We were not disappointed. The Hard Rock policy is that all allergy enquiries and requests are dealt with by the manager and she came to our table to understand exactly what we needed. They weren’t able to provide rice for M as it’s cooked with vegetables, but an impressive plate of grilled chicken with apple and cucumber slices arrived and was quickly devoured by our hungry boy. G was also well catered for as they had comprehensive allergen listings available and could prepare all burgers and sandwiches using a delicious gluten- and dairy-free bread. She chose the classic club sandwich with fries and I was delighted to hear that they used a separate fryer to cook the fries to ensure that cross-contamination risks were kept to a minimum.

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The meal was such a success that when my Mum suggested that we go back for our final meal out in Lisbon, Mike, the children and I were quick to agree. Once again their service in meeting our allergy needs was impeccable and despite it being a much busier Friday evening, we were still confident that the food had been carefully prepared. We ran through M’s food restrictions with that evening’s manager and the resulting plate of food earned a well deserved 9.5 out of 10 from M. We did have a couple of small hiccups with both meals, but they were quickly dealt with and the staff were keen to make sure that we were happy. M’s food was re-plated on  a clean dish when I pointed out that the decorative strawberries included on the original plate were not safe for him, and G’s mayonnaise was replaced after she found an unidentifiable lump in the bottom of the small serving dish. It turned out to be a stray spoonful of coleslaw, but they apologised profusely and the manager even came back to the table to add her apologies and to ensure that the rest of our meals was everything we needed. It was great to discover that this old favourite of mine was so capable of preparing safe and delicious meals that both children absolutely loved and I’m now excited to discover what other locations we can visit on future trips.

A perfect meal for a little rock star!

Summer Bakes

tumblr_static_wendy2The first 3 weeks of the summer holidays were filled with clubs and camps and activities and I needed to create some M-friendly bakes that could be packed into a lunch-box or, in the case of
Over The Wall, included as a bedtime snack to share during the evening cabin chat session with the rest of his team. With M’s tally of safe foods still stuck at 5, I wanted to bake something new, something we hadn’t tried before, and where better to start than a quick search using my trusty internet search engine. There are not many recipes out there that incorporate those safe ingredients only, so I looked for some vegan and gluten-free suggestions and decided to do the rest of the tweaking myself where necessary.

The first recipe I found was for Pear blondies, a vanilla version of the ever-popular chocolate brownie without, rather obviously, the chocolate and I was intrigued to see if this could be made for M. Using apple purée as my egg replacer, I stirred my mix and then kept my fingers crossed as the small cakes went into the oven. The smell as they baked was amazing and, as always, a certain young gentleman appeared alongside me as I pulled the final product out, ready to cool. The quantity was enough to make a dozen bitesize blondies, which were perfect as a snack during his busy days. Both children enjoyed the blondies, with IMG_0762[1]M particularly keen on the small chunks of pear that had become melt-in-the-mouth and golden as they baked in the sponge mix.

My second new baking venture were Pear and Ginger cookies, which seemed to me to be a perfect combination of sweet and spice, something I was sure M would love. This was another easy recipe to whip up, made from the staples stored in my kitchen cupboards. The dough made an impressive 18 cookies and within minutes of them hitting my cooling rack, my hopeful duo found something important to do in the kitchen in the hope they might be successful in picking up a stray biscuit as they passed. However, whilst they were tempted to taste one straight from the oven, the lure of the lemon icing to be drizzled when the cookies were finally cooled was enough to gain me around 20 minutes extra before my store started to be depleted. These were an amazingly good bake as the rice flour didn’t make the cookies taste granular at all and the ginger was subtle enough to give a little extra heat without overpowering the sweetness of the pear. The children were both big fans of this bake too and I was intrigued to see which one M would settle on as his final choice for taking to OTW camp. In the end, much as he loved both of these new treats, he decided the pear and ginger cookies would be his cabin chat snack of choice and the empty pot returning from camp was all the proof I needed that they had been a success.

Best. Week. Ever.

Back at the end of March, G was lucky enough to attend the amazing Over The Wall sibling camp and had the experience of a lifetime. I knew just how much of a success that week away from home had been almost the minute she stepped off the bus as she asked with fervour if we could apply for her to go again next year. The last few weeks have been filled with a mix of emotions as M was thrilled to learn that he had been offered a place on the OTW Health Challenges camp this August, but the ongoing drama with his broken leg left us questioning whether he’d actually be able to go (of course he would, it’s a camp for kids with health challenges after all), and take part  (well as best as his leg and determination would allow), and get from it as much as his sister had (we could only hope). Fortunately, the final fracture clinic appointment that saw M being given the all-clear and discharged from the care of the orthopaedic team fell on the Friday before IMG_0791[1]he was due to head off to camp on the Monday and the assurance of the consultant that his leg was at long last fully healed gave M the confidence he needed that he could fully participate in all the activities on offer during the week.

It was a major event in our household. It’s the first time that M has been able to go away from home without being with family; he’s never even had a sleepover because of his bowel problems and sleep issues and so it was unsurprising that our car journey to Dorset was eerily quiet as he struggled to get his anxieties under some semblance of control. It was a very pensive boy who clung to my hand as we found our way to the welcome desk to sign him in, although by the time I left around 2 hours later, with medicines handed over to the Beach Hut medical team and clothes unpacked and safely put away, he was starting to warm a little to his surroundings and had already enjoyed a hysterical couple of games of Guess Who? with 2 of the volunteers. Seeing the other children chatting and laughing as they arrived on-site, it was easy, even for me, to forget that these are children living with serious illnesses. Illnesses which are sometimes life-limiting and are always life-impacting. My child was one of them. IMG_0792[1]And when M commented on how comfortable his bed was compared to the ones in hospital I could see the volunteers in the room with us, both of whom were new this year, take a deep breath, unexpectedly shaken just a little by this vivid reminder that every child there is facing a chronic illness that is not always obvious at first glance. I was not immune to the pathos of that situation and my heart broke a little that this was his first thought, his opening response to this new experience.

Knowing he was settled and in safe hands meant that I could leave the site almost without a backwards glance. I could see he was torn between wanting to give me a hug and kiss goodbye and not wanting to show affection in front of his new room-mates, so I offered a quick hug and a kiss on the head before heading back to my car, not giving him opportunity to wobble. Despite concerns to the contrary from other people, this Mummy was fine with leaving her boy there because I had absolute confidence that they would take care of him and support him and make sure he had a week where the medical implications of his everyday world were not at the forefront of his mind. The lack of communication during the week could easily have worried me senseless, but instead I knew that it really was a case of “no news is good news” as camp would only get in touch if things were going wrong. I was also confident that they were more than able to meet his dietary requirements and would make the effort to give him meals that were more than just simple rice and chicken. Not long after the end of G’s sibling camp, I menuhad been sent a draft menu for M that one of the camp chefs had devised based on his safe foods at the time and we were all drooling at the sound of some of the dishes. In the 2 weeks leading up to camp, OTW contacted me again to check whether there had been any changes to his diet and to reassure me that they were prepared for the challenge of feeding him whilst he was there.

I can’t even begin to describe how I felt when I picked him up the following Saturday. G joined me for the drive to Dorset and was able to share so many precious memories of her own as we went through the gates and along the drive towards the house. We pulled up to the grassed area which was ablaze with colour as the various groups gathered to wave goodbye to all the campers as they started their journey home. M was the last Orange Boy standing and the farewell given to him by the team volunteers saw more than one of us with tears in our eyes. Seeing this group of wonderful adults, who had become his family for the week, surround him and sing “M, we love you, deep down in our hearts…deep down….” to him with genuine affection brought a definite lump to my throat, not least because M was equally overcome by his emotions and obviously struggling not to give into them in public.

IMG_0812[1]As they lined up outside the car and waved us off, the atmosphere inside was in stark contrast to when we arrived as M sat smiling bravely, with tears rolling down his cheeks because he wasn’t ready to leave camp and go back home. He was emotionally and physically exhausted, but refused to let sleep overcome him, instead spending the entirety of our homeward journey sharing every tiny aspect of the week he’d just enjoyed. As M told us about camp, he was worried that he would hurt my feelings when he said that the chef cooked some delicious meals that were, in the most part, “..even better than yours Mummy!”, but I didn’t mind a bit. His close new friendship with one of the other boys in his team, who also had food allergies, meant that neither of them felt isolated as they sat next to each other as their food was served at each meal. And my heart swelled when he said he hadn’t really missed us or thought of us that much because he had been having such a good time as I understand that that was so much more than I could ever have wanted for his first experience away from home.

It’s hard to encapsulate just why this week was such a significant one for M, but it really has been an incredible and life-changing experience. For once he felt normal and not the exception in the group, and that alone is priceless to me.  M’s confidence has soared as he pushed himself, and his body, to the limit and tried new activities that would have scared him before and his honesty impressed me as he relayed just how terrifying some of those new experiences had been until he had a go and conquered those fears. He has developed more independence and an even greater awareness of other people that reflects more maturity than he had before. Yesterday he took responsibility for making his own breakfast and even asked G and me what we wanted to eat so he could make our breakfasts too. That may seem like nothing much, but for a child where the world really has revolved around his needs over the last decade, it was a huge shift in attitude.

My words cannot do justice to the time he had at OTW camp, but I know how fantastic it was as he is already asking if he can go back again – not just next year, but every year until he’s too old to be a camper any more. What’s more, his aim is to become a volunteer at camp eventually if he can. M expressed it best when he told me it had been the Best. Week. Ever.

 

Snack-time specials

In addition to the great new breakfast and dinnertime finds from our trip to this year’s Allergy Show in London, we also managed to stock up on an impressive number of allergy-friendly snacks, some suitable for G, some just gluten-free and even one for M. Snack-time is always the hardest time of day to cater for in my experience. You want something that will satisfy your child long enough to stop the complaints that they’re “starving” and “have to eat now!“, without spoiling the next meal which is probably only 15 minutes away, but far too long for them to actually wait without moaning that their stomachs have been cut off and are feeling unloved and abandoned. I find it particularly hard to find something suitably satisfying for M and much as he loves my many bakes, I’m not so keen on giving him too many sweet treats on too regular a basis.

IMG_0805[1]Emily Fruit Crisps were an incredible find and an instant big hit with M. We were all intrigued by not just their apple crisps, which were reassuringly safe for M, but also their surprisingly tasty vegetable crisps: green bean crisps anyone? They are a great alternative to normal potato crisps with none of the slight after-taste that M has complained about with other apple crisp brands. I took advantage of a great show offer and stocked up on a dozen packs, although only 10 made their way home with us as M munched on the odd bag or 2 as we wheeled him around for the rest of the day. Whilst not widely available in many of the mainstream supermarkets, you can buy them through Ocado and, weirdly enough, will apparently find them in your local Topshop too!

M’s marks: 12/10

IMG_0739[1]One of my biggest disappointments had to be discovering this amazing product and realising that it was very nearly safe for M, but not quite. Le Pain des Fleurs Cocoa Crispbread is made from rice flour, sugar and cocoa powder and it’s that last ingredient that means that they’re not suitable for M at the moment. They are not easy to source, but a good search on the internet will uncover a few independent stockists of this lovely snack.

IMG_0840[1]This next product has to be one of my favourite finds of the whole show and I know G is equally delighted that we were pointed in the direction of this sweet treat. The Foods of Athenry Cookie Shots are bite-size G-friendly chocolate brownies and are absolutely delicious. I had never come across this family run Irish bakery before, but I will be eternally grateful to the lovely Julia of Alimentary Bites, who not only welcomed us with open arms to the Allergy Adventures stall, but then whispered this fabulous find to me and told me where I could go to buy our own pack. They are satisfyingly chocolatey and taste sufficiently indulgent without being big enough to spoil your appetite, especially when you’re a chocolate-loving tween. NB – whilst the cookie shots are MEWS-free, they are not made in a nut-free environment

G’s marks: 9.5/10

IMG_0839[1]These next two offerings are both gluten-free, chocolate-laden snacks, but sadly not dairy-free. I have chosen to mention them because they are great alternatives for those living on a gluten-free diet and I think they would be a perfect addition to the store cupboard for anyone who can safely eat them. The first is a Twix-esque chocolate bar, with a biscuit base, caramel filling and chocolate outer layer. I’ll be honest that they don’t quite hit the mark for me, but I am reliably informed by gluten-free friends that they are really delicious. Made by Dr Schar, Chocolix bars are individually wrapped, making them ideal for lunch-boxes or to carry in your handbag for whenever you might need one, and can supposedly be bought at more than one of the supermarket chains, though I have to confess that I haven’t spotted them gracing the shelves of our local IMG_0841[1]Sainsburys since I discovered them. The other is a fantastic snack that has become a personal favourite and another product from company, Le Pain des Fleurs, this time called Crousty rolls. These interestingly named treats are light chocolate biscuits which are rolled and then filled with a deliciously decadent hazelnut and cocoa cream. Just as with the Chocolix, the rolls are wrapped in pairs, which allows you to enjoy the treat whilst keeping the rest fresh for another day. These biscuits are quite sweet, but I can imagine that they would be a wonderful addition to a bowl of ice-cream for a truly indulgent dessert.

Lost in Translation

As Mum to a child with additional health needs, you have to be prepared the minute you venture outside your front door. You don’t just carry with you the medicines, equipment and food items you need to get you through the next few hours relatively unscathed, but also the necessary mental strength to explain your child’s needs to everyone you encounter and ensure that your trip outside of the safe bubble at home goes as smoothly as it possibly can. There are, of course, times when an essential gets left on the kitchen counter and you have to think on your feet and find a solution that will work until you get back home, and, for us, there have been times when, despite the clear explanations given and the seeming comprehension of the waiting staff, mistakes have been made and the children have suffered the consequences of those misunderstandings.

global-travel-destinations

When you add travelling abroad to the mix, those unavoidable stresses become even more intense and, as an allergy Mum, I can tell you that worries about safe food are right at the top of the list. As you may remember, last year we decided to stay in the UK during that first holiday season with a tube in place and had the most amazing week in Cornwall, where we discovered hidden treasures of restaurants and sight-seeing spots that we are still talking about nearly 12 months on. However, we decided that this year we would venture back to a favourite haunt and visit the Algarve in Portugal, with a few extra days in Lisbon tacked on to the start of our trip. We know the resort of Alvor extremely well, but this will be the first time of visiting with such a restricted diet and I have to confess that nerves have been a little greater as we plan our 10-day stay away from home.

One thing I learned early on in our holiday planning with M was to talk to our airline about taking an extra case filled with whatever medicines or foods we will need whilst we’re away and have had superb experiences with both Easyjet to Portugal and Virgin Atlantic to Florida. These conversations paved the way for our long-haul flight to the USA and we found that both the airport lounge and the airline were able to provide safe meals for M when we gave them a little advance warning, but what happens once we’ve landed abroad, especially in a country where we don’t speak a word of the native language? dictionaryOur back-up plan is our self-catering apartment, which means that there is always somewhere to prepare a simple meal of M’s safe foods without too much trouble, but I do, perhaps selfishly, want a holiday from that daily grind of cooking and be able to enjoy a family meal as we used to do when the children were small. Our previous holidays to Portugal were challenging, but not impossible as M loves fish and seafood which are always readily available, but I worried that the current restrictions might be a demand too far.

Fortunately, there are answers to the anxiety about communicating food allergy requirements in a foreign language and whilst it took a little more effort than originally planned, I got our perfect solution in the end. I started by calling Allergy UK, who offer a fantastic service of providing translation cards which “…feature an allergy alert message, an emergency message and a message for use in restaurants to ensure that your food order is free from the particular allergen that causes your reaction…” and can be ordered in any one of 36 languages to cover 70 different allergens. However, I really wanted a bespoke message detailing M’s current safe foods and unfortunately Allergy UK was not able to tailor their cards accordingly, but they did point me in the direction of the amazing Yellow Cross, a company I had never even heard about until recently.

IMG_0824[1]Thanks to a detailed e-mail conversation with Yellow Cross Director, Jane Harrison, she agreed that it would make far more sense to detail what M can eat, rather than a lengthy list of his many allergens and suggested she spoke to their translator to cost out these personalised cards. We settled on appropriate wording, it was passed to their Portuguese translator and I was quoted a very reasonable £20 for a set of 4 eating out translation cards. I confirmed that we wanted the cards, made payment and in less than a week, the finished credit card-sized cards dropped through our letter box. The cards are printed on card and then carefully laminated to extend their life, and I couldn’t be happier with the finished product. They clearly state the wording I had discussed and agreed with Jane and their service was absolutely faultless. I found Yellow Cross willing to help us with our request and I’m certain that the inclusion of these cards in our travel survival pack will ensure that our Portuguese holiday goes with a swing.

M’s happy ending

M had been anxiously counting down, fretting that the day might never come, but finally it arrived with just over a week to go until the end of term and I had left him at school that morning absolutely buzzing with excitement about everything planned for the day. It had been marked as an important day ever since his last fracture clinic appointment 3 weeks before, which you may remember showed that the break was not mending as quickly as the orthopaedic consultants would have liked and left M sporting his rather snazzy sarmiento cast for a few more weeks. IMG_0506[1]During that unexpected extra time, M had really made the effort to use his leg even more and became scarily fast and adept at using his crutches in every situation. The last week saw even more development as he more or less abandoned his crutches at home and finally started putting his full weight on his left leg. All this to ensure that that cast would well and truly be removed that afternoon and be needed no more.

Our afternoon started with a DEXA scan at the rheumatology department of our local hospital to assess M’s bone density. The severity of both this break and his previous broken arm alongside the longer than anticipated recovery time had rung a few alarm bells for his gastro team and they wanted to check that his restricted diet and years of malabsorption issues hadn’t had a detrimental effect on his bones. Although the blood tests done during his December admission at GOSH had suggested his calcium levels were fine, this additional test would give us a clear picture of his bones and hopefully put our minds at rest. I had been warned that M would need to lie still for up to 45 minutes, something I doubted would be do-able without a lot of persuasion, by which, of course, I mean bribery, but he promised to try his hardest as he realised how important it was to get these results. Fortunately, the scan itself actually took less than 10 minutes to complete and whilst M did have to lie very still, he closed his eyes and tried to relax as the bed and scanner arm twisted and turned around him to take images from all the necessary angles.

DEXA scan over, we had just enough time to walk across to the outpatients department for his fracture clinic appointment. With our timing near on perfect, it was almost straight into the x-ray suite, where M chatted away with the radiographer as if he was an old friend and went through all the motions to get the perfect set of pictures of the fracture site. From there, it was straight into clinic and minutes later into the plaster room to have his sarmiento cast removed. Ear defenders were quickly put into place before the saw was started and M’s expressive face reflected his nerves and the mild discomfort as the plaster technician cut through the cast and the vibrations disturbed his sensitive leg. The front half was removed and trimmed as M wanted to bring it home as a memento of the last 6 weeks and I flat-out refused to bring home the back half, covered as it was with layers of dirt, sweat and oodles of dead skin.

IMG_0777[1]M and I sat waiting for the orthopaedic consultant to look at his x-rays before giving us his opinion, so I tentatively peeled back the tubigrip stocking that had been the only barrier between his leg and the plaster for the last 3 months. His left leg was a little skinnier than his right, though not as much as we had feared it might be, but was also incredibly hairy, something we hadn’t anticipated at all. A little research told us that when a cast is in place for an extended period, it causes constant irritation of the skin and so the hair grows to form a protective layer between the skin and the plaster cast. It was a completely unexpected insight into what M might look like when he eventually hits those dreaded teen years and puberty – and he really wasn’t impressed! In stark contrast to his skinny, white and very hairy leg, M’s foot was almost orange in colour and as scaly as his bearded dragon thanks to 13 weeks of no washing and hot weather. I snapped a quick photo to show it to M and the entire fracture clinic must have wondered what was going on as he and I dissolved into fits of giggles as we tried to decide the best way to remove layer after layer of the dead, scaly skin. For the first time ever, M couldn’t wait to get home and jump into the bath and he stayed in it for a long time that evening in an attempt to remove both dry skin and hair.

IMG_0783[1]We were sent home with a walking boot and crutches to help ease him back into the routine of walking and exercising without his leg in a cast and within 3 weeks both had been abandoned to one side. We’ve been back for our final fracture clinic, where M was discharged with a clean bill of health and permission from the consultant to participate in as many of the activities as he wants at next week’s activity camp. Unbelievably there is no physiotherapy available for M through the NHS, but we have an excellent private physio in a nearby town and M will have a couple of sessions there to get him well on the road to recovery. He is having to learn to pace himself, something my hyperactive 10 year-old is not very good at doing, but the aching leg that results from a couple of hours running around our garden with G is a harsh reminder that his leg won’t just bounce back to where it was at the start of the year. It will take a few months to recover the strength, muscle tone and mobility that M is used to, but some hard work and focus will get him there in the end.

Most importantly, M got the happy ending he’d been hoping for since that miserable day in April. He was able to spend his last week of Year 5 back in school without crutches and even had some time back outside in the playground with his peers. And nothing will beat the absolute joy I felt as I watched him disappear from the classroom surrounded by his supportive friends on the last day of term.

Breakfast Bonanza!

As I mentioned the other week, we came home from the Allergy & FreeFrom Show with bags full of new allergy-friendly goodies for G and M to taste test and review, and they have already made a great start in trying them all out. I originally planned a single blog post to cover our favourites, but soon realised that there were just too many to cover in a single piece of writing and that I would need to split my categories up instead. What better way to do this than by looking at these products in terms of the meals where we’ll be using them, and where better to start than with breakfast?

Breakfast has long been the bane of our household, with M following steadily in my footsteps as a reluctant eater of a meal first thing in the morning. Whilst I can, and do, have a later start to my day by munching on something in the office, M needs to eat before he goes to school and all too frequently this is where we’ve hit stalemate. I’ve turned my hand to make breakfast muffins in the past, but even those had a limited shelf-life of success and it was quickly back to the drawing board once his diet became more restricted. Every day has been a battle, mostly one I’m more than happy to fight, but on other days, well, not so much and we compromise on a glass of rice milk if nothing else. However, these past 2 weeks have been like no other and M has been up, dressed and downstairs asking for breakfast before I’ve even had time to take a breath every day. Every. single. day. Vive la révolution!

IMG_0689[1]The reason for this change of heart? The discovery of Rice Flakes Porridge courtesy of the amazing Delicious Alchemy, not something new to the market, but most definitely new to us. I’ll be honest, it is a brand I’d heard about in passing more than once, but I hadn’t really spent much time investigating it as I believed it to be big on the gluten-free front and not much else. Oh, was I wrong. As you will discover from their website, Delicious Alchemy was launched in 2006 by Emma Killilea, a coeliac who was frustrated and disappointed by the gluten-free options out there and decided to do something about it. The company has gone from strength to strength in the past 10 years and now works with a number of mainstream supermarkets and stockists to get their products on shop shelves. G was drawn to their stand by the delicious gluten- and dairy-free brownies that were wafted under her nose and I soon got chatting to their finance chap, where we swiftly found common ground on both the accountancy and allergy-friendly fronts. Despite G’s sighs of utter joy about the brownies, I wasn’t drawn to buying the mix given I’m very much a “cooking from scratch” fan, but once I spotted the packets of porridge flakes nestled amongst the other goodies, I felt certain this might prove to be our first purchase of the show. Delighted to IMG_0695[1]discover that the porridge contains rice and absolutely nothing else, I quickly snaffled 3 bags with my fingers tightly crossed that M would actually enjoy it as much as he insisted he would. I needn’t have worried. The rice porridge has been a massive success and is so easy to make too. Just 3 minutes in the microwave with some rice milk and his breakfast of choice is ready. Not only has he insisted on having it every morning, but it has become a popular bedtime snack of as well. I’m more than a little excited that this might also open up some options for snacks for M as delicacies such as flapjacks, biscuits and muffins all readily spring to mind.

 

M’s marks: 11/10 (and as he’s eaten 1.5 bags in a week, I’m thinking it’s an unmistakable hit!)

IMG_0687[1]Another producer I was determined to visit with G was Nutri-brex (recently rebranded from Nutri-bix), the overall winner of this year’s FreeFrom Food Awards and one of my personal favourites. Ever since I first tasted this breakfast cereal during my stint as a FFFA16 judge, I wanted to get some for G to try, but it has proved disappointingly difficult to find it in the less-than-well-stocked aisles of my local supermarkets. By the time we finally made it to their stand, G had gone at least 10 minutes without gorging herself on one of the many allergy-friendly samples that were on offer and was more than ready to try some of this cereal, in an attempt to shut Mum up if nothing else. The company had launched a brand new product at the show and G decided she would taste that with the added extras of some soya vanilla yoghurt and grated chocolate on top. IMG_0691[1]She was instantly won over and 2 boxes of the Coconut and Crispy Rice cereal bars soon joined the 2 original boxes that formed part of our goodie bags. Since coming home, G has enjoyed the original bars with raisins for her breakfasts and I’m so glad that I was finally able to introduce her to this product. It is tantalisingly close to being safe for M, but sadly until we trial sorghum, not something that is high priority for him right now, he’ll just have to stick to the porridge.

G’s marks: 10/10

IMG_0692[1]The day also introduced a couple of new-to-us milks, which have been brought home to trial. M is already very keen on the Rude Health Brown Rice Drink, which he claims has a slightly sweeter and nutty flavour in comparison to his regular rice milk. Whilst I love finding new products for M, given the recent problems with his broken leg, I prefer being able to buy rice milk that is fortified with calcium, something that this one doesn’t appear to be. Add to that the price of this product, which at around £2 per litre makes it considerably more expensive than the Rice Dream I usually buy for him, this will be saved as a treat for special occasions rather than an everyday commodity.

M’s marks: 10/10

IMG_0693[1]As for this last product, well the jury is definitely still out in the 7Y2D household and I will be withholding my judgement on it for quite a while. If you follow Nathalie at The Intolerant Gourmand, you may well have read about her 4-week trial of a2 milk and the conclusions she drew about it. I’ll be honest, the information we were given at the Show and that I have read via their website has left me more than a little confused. I understand the principles behind the milk and the exclusion of the a1 protein, but am unclear as to whether this means it is or isn’t safe for those struggling with lactose intolerance. Their representatives on the stand were more than happy to help, but not all of them were fully to speed with the claims the milk makes and whether it would be ok for G to drink it or not, given she can’t do dairy, but can tolerate goats’ milk. It’s a difficult one for me to assess as I have no intention of trialling G on it under the circumstances, but fortunately I had another willing tester in Mike, who is also lactose intolerant and was happy to give a2 milk a try, especially as they gave us a free carton to take away with us! The milk is incredibly creamy, far more so that either Mike and I expected for semi-skimmed and it took a couple of days for Mike to reach any conclusions. Whilst his stomach was certainly aware that he was drinking cows’ milk, something he hasn’t drunk for years, he didn’t suffer any extreme reactions to it. I’m not sure I’d rush to buy it again and would recommend that any one thinking of trying it does a lot of research first.

Mike’s marks: 8/10 and he commented that as someone who hasn’t had cows’ milk for years, the flavour took some getting used to.