Inside the Free From Food Awards 2016

I’m writing tonight’s post in the peace and quiet of the hotel room in North London that has been my home for the last 2 days. It feels a little surreal to be away from my sound proof bubble at home, where I desperately try to ignore the perpetual chaos of family life that swirls around me and I can’t quite get used to being able to write completely uninterrupted by demands for food or drink or the need to referee between any 2 of the other 3 members of my household. It’s no exaggeration to say I’ve been counting down to these days away for months and have had to work incredibly hard to not spill the beans about my involvement with this year’s Free From Food Awards, #FFFA16. I feel incredibly honoured to be included on the judging panel and have enjoyed every moment of this experience.

fffaFor those of you who are not in the know, the #FFFA are the brainchild of Michelle Berriedale-Johnson and were launched in 2008 to celebrate excellence and encourage innovation within the free from food industry. Each year a group of judges from across the allergy and free from community are invited to taste a variety of new free from products and rate them on quality, usefulness, innovation and nutritional value. The foods are all tasted “blind” in the first instance, with names and packaging removed so that the products really are assessed on their own individual merits. Then follows an active discussion as each individual judge is asked to help reach a group consensus on the category winner and which other products deserve to be shortlisted, commended or given a highly commended award. Given the judges have a variety of backgrounds from free from food professionals to health professionals and from allergy sufferers to allergy bloggers as well as the occasional “normal” person to compare each item to their non-allergy counterpart, you really do get a rounded point of view about what makes the highest quality free from product. Believe me when I say that any manufacturer who wins a category is producing something that has impressed across the board.

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This is what judging confectionery looked like!

I was keen to judge the Breakfast and Tea-time categories as I felt these were areas where it would be amazing to find some new foods to tempt G and was delighted to be included not just on those panels, but on those for Confectionery and Meaty & fishy ready meals too. The ready meals was a real added bonus for me as, whilst I cook from scratch 95% of the time, the option to have some good gluten- and dairy-free meals stowed in my freezer for those occasions when a quick meal is needed for G was incredibly attractive. The number of entries was overwhelming to a #FFFA16 newbie and I was extremely grateful to Ruth at What Allergy who had advised me to skip breakfast that first morning to ensure I had space for all the foods I’d be trying. With 36 breakfast products, 22 confectionery items, 32 meaty & fishy ready meals and 26 tea-time treats to taste over around 12 hours, no wonder I left London feeling extremely well fed.

Even better I found some great new-to-us foods that I thought G might like to try and these are my top picks from each category:

  • IMG_0089Breakfast: Nutribix – a great alternative to the well-known breakfast brand, Weetabix. These were MEWS-free, taste delicious and would definitely provide a hearty, healthy and filling breakfast. I particularly liked that they were so reminiscent of their wheat-filled counterpart, a cereal that G had loved when she was tiny in the days before we knew she needed to be gluten-free.
  • IMG_0093Confectionery: Eskal Chocolate Wafer Rolls – I have to be honest and say there was a whole host of amazing chocolates for this category, which left me in some of a chocolate-induced haze by the time we got to the end of the judging session. However, these wafer rolls were the stand-out product for me as they were light whilst still being indulgent, deliciously tasty and would make a great accompaniment to a bowl of ice-cream for that extra-special twist. The only downside is that they currently contain soya, especially as they are amazingly gluten-, dairy- and egg-free.
  • Meaty & Fishy Ready Meals: I can’t begin to tell you how impressed I was with the vast range of free from ready meals that we got to taste and, to my delight, this category produced 2 top picks for me. The first is one that G will love and that would have ticked so many boxes for M pre going elemental. Tesco is adding a gluten-, dairy-, egg- and soya-free scampi to their own brand Free from range, which I’m sure will prove to be a huge success with many allergy families.IMG_0094[1] I’m so excited for it to hit our shelves in the next couple of months and can’t wait for G to try it. My other choice is something I know G won’t want to try, but it ticked so many boxes for me as it was tasty, free from and could be prepared in the microwave in less than 5 minutes, truly the quintessential ready meal. Better Than Rice Chicken Massaman Curry introduced konnyaku rice to me, which has a completely different texture to normal rice and I’m looking forward to trying it out with M. He might not be able to eat the rest of the dish, but with such a limited diet, this new rice will bring an interesting twist to mealtimes.
  • Teatime: By the time my fellow judges and I reached this final category in my judging timetable, I was definitely suffering from a little food fatigue. As M calculated for me when I got home, I had tried over 100 different free from offerings in my 2 days away and had enjoyed a good many of them. doughThe teatime category was again filled with a delicious array of biscuits and cakes, but there was one product that for me stood head and shoulders above the rest: the amazing Borough 22 doughnuts. These were impressively gluten-, dairy-, egg- and soya-free and also vegan, but most definitely not flavour-free and were the biggest hit of my #FFFA16 experience. I know that doughnuts are one of those indulgences that so many allergy sufferers really miss and these will more than ably fill a definite gap in the market. Not only did I get to savour them, but even better, the #FFFA16 team offered me the remaining 6 doughnuts to take home for G and my girl has been delighted to receive this treat.

My thanks go to Michelle, Cressida and the rest of the team at the #FFFA16 for their welcome and commitment to encouraging development in the free from community. I loved every moment of my time as a judge and have met some great individuals who work in different aspects of the allergy world and were a lot of fun to work/eat/disagree with over the 2 days. The shortlist of contenders for the final awards will be published on February 10th and the winners announced at the awards ceremony in April. I can’t wait to see who won in each category and share some more of these innovative products with you.

Some of the amazing free from cakes

 

Introducing Leo…

12239456_10153105383806123_4074499908760813169_oWe’ve had more than our fair share of animals since the children were small and over the years our house has been home to, believe it or not, 7 cats, 1 rabbit, numerous fish and now our latest family member, Leo. For the last 2 years or so, M has been eager to add another pet to our household and not just any pet: he has been very specific about the animal he’s had in mind. I have to be honest and say that I didn’t leap at the chance when he first made his bid, after all I have years of Mummy experience with M’s wildly fantastic and short-lived fads and this wasn’t one I was prepared to indulge unless he was genuinely intent on looking after it for the long haul. I’ve long-held the opinion that our pets have been a massive source of comfort not just for M, but for G and me too, and it was something of a stretch to imagine that this creature would bring the peace that cuddling one of our cats instills in me.

However, M has stuck to his guns and continued to ask for his new pet and finally, back in about October, I gave in and agreed that he could have it and so our plans for introducing a bearded dragon to the household began. Due to the high costs of kitting out this exotic creature, we discussed with M the need for this to be his joint Christmas and birthday present and something we couldn’t just go out and buy tomorrow. I am incredibly impressed by the mature attitude with M accepted this plan, a real sign that my baby really is growing up fast. 20160129_152625The first step was to buy him a book about them and he has spent hours reading and re-reading about bearded dragons and how to best look after one. His knowledge about these interesting animals is impressive and he has willingly shared what he knows with friends, family, doctors and nurses alike. Knowing that a GOSH admission could happen any day, we delayed our actual purchase until M was back home and life had settled down to something resembling our normal once again.

With the start of a new year, so also started M’s career as the proud owner of a bearded dragon. I was lucky to discover one on-line that needed re-homing and although I was initially concerned that M wouldn’t be keen on a “second-hand” pet, he quickly leapt at the chance when I was able to reveal that his new acquisition would share his birthday! The dragon’s previous owner had called him Nigel, but M felt that didn’t suit and quickly renamed him Leo. The vivarium was strategically measured and fits on top of the pint-sized wardrobes in M’s bedroom, so M can really take full charge of looking after him. Mike and M have willingly taken on the task of feeding the fresh veg and live crickets on a regular basis, which is just as well as it’s the one thing I have refused to get involved with. M spends time every morning and evening handling and chatting to Leo and is slowly filling his diary with play dates for his friends to come and meet a real life dragon. I must admit that owning a reptile was never at the top of my bucket list or life plans, but will confess that he is strangely intriguing to watch.

Leo

Popcorn Chicken

You might not have realised it, but last week saw the celebration of “National Popcorn Day” in the USA – a day dedicated to “drawing awareness to popcorn and the never-ending amount of fun you can have with it!” Unfortunately, popcorn is currently yet another treat that M cannot enjoy due to a failed food challenge, but a revisit to my Kracklecorn post from last year reminded me of a popular chicken fast food chain and its popcorn chicken nuggets, This dish brings back fond memories of Mike’s grandmother, who loved this treat and of trips to the nearest KFC to pick up a portion or 2 for dinner whenever we were back in Canada and making a visit to see her.

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January has been something of a grey month for M, who has struggled with giving up the foods unsuccessfully reintroduced during his GOSH admission. His health is infinitely better than it was 6 weeks ago, but my plucky 9-year old has found it tough to see eggs, potatoes and bananas disappear back out of his diet after such an intense period of eating them, no matter how ill they made him. Determined to develop a new recipe to cheer him up a little, and inspired by my Canadian recollections, I researched a number of popcorn chicken recipes to see if I could recreate this fast food treat. Despite a continuing absence of safe foods for M, we have been able to successfully expand his repertoire of herbs and spices and I wanted to introduce some quite bold new flavour combinations to tantalise his taste buds. Some of the recipes I found suggested using an Indian spices theme and, as India just happens to be M’s topic for the new school term, this seemed the perfect opportunity to prepare an Indian-style popcorn chicken for dinner.

Thanks to the ever-present box of Nature’s Path Crispy Rice Cereal, the only safe cereal M can eat and actually enjoys, my trusty deep fat fryer and a selection of Indian-esque spices from my kitchen cupboard, I blitzed up a crumb coating, added my chicken 20160106_180748and kept my fingers crossed. The first batch looked delicious and I couldn’t wait to take a sneaky bite or two to…ahem…”taste test” before serving them to my discerning public. The smell wafting through the house worked better than a dinner bell and first one child, and then the other, drifted to the table with washed hands, ready to try dinner. For that first meal, I prepared 2 chicken breasts worth of popcorn and left my youngest bitterly disappointed that there was absolutely not another morsel left for him to consume. Subsequent meals have seen bigger portions prepared and disappear in similarly quick fashion, and I’m delighted to have found another winning recipe for dinner. Mike has also declared my popcorn chicken a huge hit, even though all he’s been able to scrounge has been the sparse crumbs left once G and M have emptied the bowl. They really were “finger lickin’ good!”.

Thank goodness for TGI Fridays!

When you’re an allergy Mum, there is nothing better than finding somewhere your entire family can eat safely when you’re out and about. I spend a lot of my time in the kitchen when I’m at home, tweaking recipes and continually trying to find new, tasty and interesting ways to prepare 5 safe foods for M and sometimes I just want a break from it. We have found some firm favourites amongst the chains, who have not only been able to cook M-friendly food when we were excluding just 7 – remember those days? I just about can – but have also impressed us in the last 12 months too. From old faithfuls such as Pizza Express, Giraffe and Bella Italia, to newcomers Wagamama and Jamie’s Italian, my cup quite literally runneth over! Our holiday to Cornwall last summer led to the discovery of an amazing small independent restaurant who catered for M without hesitation and made all the difference on our first holiday with a tube.

tgiWith the start of a new year, we decided to branch out and challenge yet another popular old friend, TGI Fridays. M has been reluctant to visit this restaurant since he went elemental last year and our first suggested meal out after he was discharged from GOSH fell sadly flat, when he refused to stay there because “..everyone around me will be eating chips Mummy…“. As we had not long had to stop the potato trial due to all his problems in hospital, Mike and I could totally understand and were massively impressed that, at long last, he’d been able to tell us his reasons for not wanting to stay. However, never one to be beaten by a near 10 year-old, I bided my time until we once again headed out for a small bit of sales shopping and decided to treat them to lunch as well. M’s first choice was Wagamama, but an ill-timed fire in their kitchen put pay to that idea and I tentatively suggested TGI Fridays as a potential alternative. Although only a couple more days had passed since our first attempt, M felt a little more able to challenge their menu and we set off on our brand new restaurant adventure.

The first thing on our to-do list was to advise the greeter of our allergy needs as soon as we arrived at the restaurant and asked for a table. I always do this when we eat anywhere new, even when it’s just a new location of one of our known safe restaurants, so that neither child has to go through the stress and embarrassment of discovering they can’t cater for them and having to leave the restaurant. The greeter asked the restaurant manager to come talk to us as this is TGI protocol when dealing with customers with food allergies. We explained M’s dietary requirements and he reassured that they could prepare chicken, apple and cucumber for M, though sadly not any rice as their current rice dish contains a Cajun spice mix which we haven’t trialled with him as yet. With M happy that he would be able to eat, we headed for our table, ready to peruse the choices for the rest of the family.

20160103_160912 (1)For those of you not in the know, TGI Fridays has a separate menu for allergies, which lists the lactose- and gluten-free options readily available. G was delighted to see such a selection of starters that were safe for her and begged to be allowed to try one of those as well as her main course. She opted for the BBQ houmous starter with corn tortilla chips, followed by the Bacon burger with fries from the allergy-friendly children’s menu. Having sorted our little Miss out, we’re turned our attentions to the more knotty problem of young Master M and here I have to say, TGI Fridays came into their own. The manager came to sit with us at the table, armed with a mammoth allergy information folder and cross-referenced every single menu item we were considering for both children to ensure the food would be absolutely safe. He advised us that they used separate chopping boards for the food preparation to avoid cross-contamination risks and showed an in-depth understanding of our requirements which reflected the extensive food safety courses I later found out the restaurant chain insists all their managers attend.

The only potential issue arose when we discussed what oil M’s chicken would be cooked in as the restaurant uses either olive or the more generic “vegetable” oil in their cooking. As we are still limited to rapeseed and coconut oil only, I asked if the chicken could be cooked without oil and the manager went off to see what could be done.20160103_160748 I was impressed to discover that before settling on that as an option, he had actually investigated whether they could get hold of any rapeseed oil from one of the neighbouring restaurants for M’s chicken breast, but had rejected that option when he discovered those restaurants couldn’t guarantee that there was no cross-contamination risk. Instead, the chefs prepared the chicken oil-free and the speed at which it disappeared from M’s plate is a testament to how well prepared and tasty this dish turned out to be. G’s food vanished in similarly quick fashion and Mike and I breathed a huge sigh of relief that our risky restaurant choice proved to be such a success.

*following our visit, I discovered that TGI Fridays also have an impressive allergy menu on-line, which allows you to select the foods you’re avoiding to see what choices you have. This is a great tool to give you an idea whether they can cook for you or not, but nothing beats talking to the restaurant managers themselves.

 

 

A pain scale for every season

My last blog post about M’s interpretation of his pain and how important it is for his medical team to understand him sparked a series of interesting conversations both on-line and in real life about just how effective pain scales can be for those who suffer from chronic pain. So many shared their own experiences of how their children express their pain and adapt to a new “normal” based on what their average day looks like and the symptoms they assume to be something that everyone has because they’ve never learned any different. What was most fascinating was the array of ideas and examples of the different pain charts out there that were sent to me and I thought I’d share some of them with you:

painG’s godmother shared this pain scale image with me and I love the wording that is attached to it as it sums up to a tee how M has described his levels of pain over the years. From the magical unicorn of no pain at all which happens occasionally, to the breaking point of inconsolable sobbing and unbearable pain that little can ease, I’ve seen M pass through every stage of this chart on all too regular a basis. I doubt the colours, images or facial expressions would appeal overly to him, but it helps to clearly explain how he copes to those who need to know.

charlie_brown_pain_scale-170452A fellow FABED Mum sent me this one saying, “It’s the only one that’s ever worked – I think it’s because apart from the last face, they aren’t very emotional, so she is prepared to admit to them. There is a Lego one, but the emotions depicted on the faces is *extreme* – I think it’s more for a paediatric A&E type thing. So a kid with a normal pain/health experience would probably find it helpful, but the level of distress the pain correlates to isn’t much help for someone who has made this into their normal…I do think these pictorial pain scales are good – pointing is so much easier than talking, to start the process. R finds the words ‘annoying/uncomfortable/miserable/horrible’ very helpful and she even sometimes uses them without prompting.” The recent release of the latest “Peanuts” film will no doubt lend added appeal to this Charlie Brown themed scale.

legoThis third one I discovered through Twitter and was posted up by @2tubies, whose 6-year old son helped make his own pain chart for the school environment with the help of the school SENCo and his Mum. They used Lego figurines to depict how he might be feeling and offered some easy solutions for his symptoms. This solution-based approach is one that I find works well with M and have started using it more and more over the years. I rarely give M the option of staying home from school when he’s feeling unwell, but will instead list out those solutions I think might ease not only his pain, but also the whirlwind of emotions that is so frequently tied into what he’s feeling on a physical level. Whilst he was still being tube-fed, I would always start with the offer to slow down or even stop his pump for a limited amount of time and then followed that up with pain relief or a hot water bottle. My final question has always been what M thinks will help him the most and given he has a clear idea of what I’m suggesting, then we have always been able to find a solution that works for us both. Whilst giving these choices verbally works well at home, I imagine that presenting them in a pictorial fashion would make great sense in the school setting.

Of course, the ideas behind these pain scales can easily be extended to cover other physical and emotional needs that our children may have when outside of the home. When G was younger and dealing with her own health challenges, one of her fantastic teachers introduced the concept of a “magic marble”. We had discussed the use of a password, a word that was random enough to not be misinterpreted as a genuine contribution to a conversation and which would indicate that G needed help, but she was at an age when she was reluctant to vocalise her needs and the use of “rhinoceros” actually stuck out like a sore thumb most of the time. Instead, G kept her marble somewhere safe and easily accessible at all times, be that her pocket, bag, drawer or table, and just needed to give it to her teacher or place it on the teacher’s desk to indicate she needed some support. No other child was aware of the significance behind this marble and consequently didn’t bat an eyelid if they spotted her handing it over, assuming that she’d probably just picked it up and was handing it in. It was an easy way for G to communicate her needs about a sensitive subject and gave her a sense of ownership over a situation that was otherwise lacking her control.

Signal LightAt G’s secondary school, they have included traffic light coloured pages in the back of the pupils’ planners and the children are encouraged to use them by putting the relevant colour facing up on the desk if they need some help during a lesson, but are too worried or nervous to ask. For some children, a “traffic lights” approach using counters or cards can also be effectively used to indicate how they are feeling in any given situation, where red can indicate their sense of losing control or not coping with the environment surrounding them. The opportunity to be tactile with the counters may also help children with sensory issues order their thoughts and be more able to express them when asked. Even if the child is not able to share what’s troubling them, a clear plan of how the teacher or adult in charge should respond to each colour will change that child’s perceptions and experiences away from home. Similarly, M’s school uses a “Fist to 5” approach to their work, where fist indicates a lack of understanding and the need for some help, and 5 means they are confident and happy to carry on on their own.

Whatever the system used, these scales encourage a child to communicate with the outside world about how they are feeling and coping, even when they don’t have the words to express it.

What’s in a word

I’ve long been aware that when it comes to understanding M, it really pays to understand how he interprets and sees the world. As for so many who live with chronic illness, M’s life is coloured by his EGID and multiple food allergies, and his view of “normal” is understandably skewed by his daily experiences. Courtesy of katbiggie.comThe sad reality is that M has been living with the symptoms of EC for so long that he doesn’t always realise when something he’s feeling isn’t usual and we have often discovered a symptom months, or even years after it first started to happen. These problems are frequently something we could have helped resolve sooner and it is never clear just how long M has been coping with it on his own.

My first experience of this was when M had his second set of scopes done 2 years ago. The nurse had started him on Klean-prep via a NG-tube and told M to tell her if he started to have reflux whilst it was pumping into him. Reflux was something we hadn’t struggled with since he was a baby and so he didn’t know what she meant. My explanation that he might feel nauseous or have some sickness come up into his mouth was met by a puzzled look, “…but Mummy, I get sick in my mouth all the time, why do I need to tell her if that happens?” He was genuinely perplexed by this request and I was made suddenly aware that there was an awful lot more going on with him than we really knew about.

Strangely, during our latest GOSH admission, that issue with reflux once again raised its ugly head and yet again, M more or less accepted it as being back in his life without complaint. When we first learned about the reflux, we worked hard to uncover when it was happening most and started him on a daily medicine to help treat the symptoms. We quickly found that it appeared to be triggered when he ate potatoes and raisins and by cutting those from his diet as well as the new medication, the reflux fortunately seemed to ease. The day after we started the potato food challenge in hospital, M complained that he was struggling with some reflux and explained in extremely graphic details to nurses, dietician and registrar what he felt. Whilst they made note of this problem, disappointingly they didn’t do anything to ease the discomfort he was in and delivered that line of “…he just needs to push through this…” that I quickly came to hate. Their dismissive attitude shown so clearly in front of M and obviously picked up on by him despite the illusion of him being absorbed by the TV whilst plugged into his headphones, meant that he stopped mentioning it and the medics assumed that it was a one-off event only.

It wasn’t until they needed to start adding senna to the klean-prep to clear his system that we learned that M had not been 100% open about what was going on. The conversation had turned to whether he would willingly take the senna by mouth or if it was best pushed down his tube, when M casually commented that it didn’t really matter as he would end up tasting it either way. A little gentle prodding by his nurse soon revealed that the reflux had in fact been ongoing since the food challenges began and during that middle week of our stay, he had been experiencing the vile taste of the bowel prep in his mouth on a very regular basis.

This story for me explains why it is so important for the medical teams to understand that every child is an individual and have very different levels of what they can accept and cope with, particularly when it comes to gastro conditions. In M’s case, this means that knowing how to phrase questions and interpret his answers is key to learning more about how he feels, especially when it comes to his coping strategies. For a number of years, Mike and I have repeatedly told our consultant that we firmly believe M lives with a level of pain that he has come to accept as his “normal”. When you see M running around with his friends or experience the whirlwind force of his personality, this can be difficult to believe and the fact that, between my reluctance to allow either child to stay home from school unless they’re dying and M’s determination to be in the midst of everything as much as possible, he has remarkably good school attendance for a child with a chronic illness, is in stark contrast to the picture we’ve tried to paint.

It’s at times like these that the words used with M, and by M, can reveal the most. At one of the many meetings I had with his consultant during our admission, she and I had talked about what the future holds for M. She told me that we might just have to accept that he would need to live with a level of pain that others might consider unacceptable, so that he has a more varied diet to choose from and my words that he already lived with enough pain seemed to fall on deaf ears. It was only when M met with the lovely GOSH gastro psychologist half-way through our stay that he was finally able to talk about how he feels each and every day. Whats-in-a-wordShe quickly established that M differentiates between a “pain” and an “ache”, which meant that unless he was asked the right question, M would proffer surprising answers.

Of course, the truth of the matter is, as we have repeatedly said, M has an almost constant ache in his tummy and bowels that he has just accepted as part of his reality. He doesn’t call that “pain” and, perhaps because of my unwillingness to unnecessarily dope him up on Calpol at the drop of hat, he doesn’t expect to have anything more than a hot water bottle or wheat bag to treat that discomfort. M calls that an “ache” and when asked to rate how that feels, he cheerily announced it was usually around a 4, the level where they would start to offer pain relief on ward. So when he was asked by the nursing team if he was suffering any “pain”, his answer was almost always a no except when he was experiencing a severe tummy cramp – his definition of what a “pain” was. The nurses had been struggling to understand how he could be rating his pain at an 8 or 9 at one point, only to say less than 5 minutes later that he had no pain at all before they’d even had time to give him any pain relief. This insight into the workings of M’s mind was invaluable as it meant that finally we all – doctors, parents and M himself – were singing from the same hymn sheet and receiving accurate feedback from M about how he was feeling; and all because we now understood the power in a word.

Reflections of an admission

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“I think we can all agree that this admission has been a complete disaster”

Mike and I could have been forgiven for expecting to see Craig Revel Horwood in the room, but in fact those were the opening words of M’s consultant at our meeting on day 13 of his admission. A meeting attended by on-call gastro consultants, ward registrars, dietician, nurses and the gastro psychologist and where not one of them disagreed. When those are the words you hear uttered by one of the senior gastro consultants at Great Ormond Street Hospital, you know that things have gone really badly wrong. To say that Mike and I were surprised to hear them offered as the opening gambit is an understatement: we had gone into this meeting prepared for battle, expecting to have to defend our opinion that M’s current deterioration was due to the food challenges, that same discussion I’d been having for the previous 10 days with that same multitude of medics, and without warning they appeared to have come round to our way of thinking.

Since M’s discharge, lots of people have asked about the admission and what happened whilst we were in London. The plan for the original 2-week admission was to trial 4 foods whilst we were there – potato and egg, which we hadn’t done at home – and banana and salmon, which we had, but he had failed previously. The original expectations as discussed and agreed with both his consultant and dietician were that he’d start to show a reaction within 48 hours of starting each food and so the admission was to look like this: 3 days observation to understand his “normal”, 8 days of food challenges – a new food every 2 days whilst continuing with the previous ones – and then 3 days to assess before sending him home. This approach of challenging with 4 foods in 10 days was ambitious to say the least and left no wriggle room for recovery if he failed at any point. Given we are used to spending at least 5 days slowly introducing a new food to M and then expect to take a week, if not longer, to get back to normal, it quickly becomes evident why things didn’t go according to plan.

3 days observation – these happened, but they hadn’t allowed for just how upset M would be by the short-notice of his admission. As I had packed our case having picked him up from school, I could hear him sobbing in the other room and discovered him lying on G’s bed, wrapped in her arms as he cried about missing her birthday and being away from home in the lead up to Christmas. This traumatised him so much that, as for so many people even without gastro issues, his tummy/bowels/digestion were upset and didn’t behave as the “normal” we’d got used to over the last 12 months. This was to later prove a problem as the ward doctors insisted he was constipated on admission and struggled to accept that these new foods were in fact the issue.

8 days of food challenges – we started with potato at a speed and quantity that I just couldn’t comprehend. There was no go-slow and gently increasing his intake here, instead he was allowed to eat “as much as he wants” and after 2 years without potato,12309588_10153139593761123_4933720941134322006_o believe me he went at it with gusto, even eating 6 roast potatoes at one sitting. Within the first 24 hours he started to show reactions to the potato  – severe reflux, tummy aches, a constant need to wee and he started to soil again, something he really struggled with on an emotional level. The ward doctors refused to believe he could be reacting so quickly and their repeated mantra to me soon became “it’ll take 4-6 weeks for him to show a reaction” and “he just needs to push through this“. As each food was introduced, things got worse and worse as he was now completely incontinent, a position we hadn’t found ourselves in for a year. All the signs of his bowel starting to shut down were there as he was weeing for Britain, his appetite was dropping off and his energy levels started to wane and I kept saying that these indicated he was failing the foods, only to be told that it wasn’t possible. They were palpating his tummy twice a day and insistent it felt fine and every conversation ended with “it’ll take 4-6 weeks..yada yada yada…” – by now you get the picture! By day 8, they finally agreed to x-ray and, lo and behold, he was chronically impacted. This x-ray was apparently one of the clearest they’ve ever seen showing it – solid black throughout his colon due to the blockage.

Then came the heated discussions about why this had happened. They were insistent that he must have come into hospital constipated, though how a child who goes every day can be constipated they’ve still to satisfactorily explain to me, and I was equally insistent that he wasn’t. We ended up agreeing to disagree as neither of us could prove it either way, though it has now been noted that should M be admitted again, they will x-ray at the start of the process to make sure we all know the state of his bowel.

3 days assess/discharge11018900_932190456872138_8699359326763992708_obecame 6 days of powerful bowel prep continuously via M’s NG-tube plus additional senna for the last 3 of those as things simply weren’t shifting as hoped. I have honestly never seen him so ill as he was by the end of that week – bent double from the cramps, crying, refusing to move from bed or engage with anyone, lethargic and rating his pain at an 11 or 12. Throughout this time he was expected to continue all 4 foods, just in case his obvious bowel reactions were actually nothing to do with the challenges and they had introduced a daily dose of senna to keep things moving, something we hadn’t needed at all during the 12-months being tube-fed.

We finally came home after a further 5 days of “recovery” time in hospital and decided to stop banana and salmon straight away as well as the daily laxative. Things slowly started to improve and we made the decision to allow him to have egg and potato in small amounts for a few more days over Christmas. However, since the 27th we’ve stopped those too and gone back to just his 5 safe foods – and he has recovered amazingly. No tummy aches or pains, as much energy as we’re used to, back to regularly using the toilet with no issues and much, much happier in himself. The medics would no doubt argue that it’s difficult to pinpoint when things started going wrong, but to me it seems obvious: the introduction of these 4 foods is undoubtedly the root cause of his bowel problems in GOSH.

That’s the truth behind our December admission and yet to many I’ve no doubt it will seem that it all went incredibly well. You see, the one thing that was achieved during our stay was that M’s NG-tube was removed and my little superstar has proved us all wrong by accepting the challenge of drinking his feed head-on and is drinking a much-reduced volume on a daily basis.IMG_0067 M’s consultant was very determined to get the NG-tube out and at times it felt to us that it was her sole focus for the duration of the admission, which was difficult to cope with when we were needing and hoping for so much more. Achieving that has been amazing, but he hasn’t suddenly started eating a “normal” diet, in fact he’s exactly where he was before we went in, and the need for the elemental feed (E028) is still very much there. The flip-side of losing the tube is that M’s EGID, multiple food allergies and limited diet whilst not diminishing in any respect, have once again become hidden, a set of invisible illnesses, and we have all had to adapt our expectations by keeping that knowledge firmly in the front of our minds. That single small step forward simply does not cancel out the many massive steps backwards that happened whilst we were in hospital and doesn’t acknowledge the harsh reality that very little else in his life has actually changed.