Tag Archives: food trials

The 450th day

449 days…

449 challenging days of trialling one food after another until 17 foods have been tasted and rejected by M’s body.

449 emotional days of soaring highs and crashing lows as hope is dashed time and time again.

449 testing days of comforting and reassuring and convincing an increasingly despondent 10-year-old that we will keep trying, keep persevering until we find that elusive new safe food.

449 long days since M last successfully trialled a food and believe me when I say that we have all felt the impact of every single one of those days.

And then came day 450. 450_banner_closeup

A glorious, cheerful day. A day when food challenge number 18 was accepted and finally, after 449 days of waiting, the sun peeked out from behind the dark clouds and we had success.

This success has been hard-fought for on all levels and we all needed it, not least M. After nearly 15 months on a diet consisting of rice, chicken, cucumber, apple and pear day in, day out, he finally gets to add parsnips to his list and there’s no-one more delighted than him. It’s not been a 100% pass, but it is one that he desperately needs right now and we’ve taken the decision that the boost to his morale is worth so much more than total perfection. We’re only a couple of weeks in and the variation it has already brought to meal-times is, quite simply, a game-changer. From mashed parsnips to parsnip crisps and roasted parsnips to parsnip and apple soup, the options are endless and so are the smiles in our house. And, just like that, those 449 days are over and forgotten, and instead we’ve started on day 1 of our next set of adventures.

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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.

Eating out with allergies the Portuguese Way

I’ll be honest, the last few months have been difficult in more ways than one. M’s broken leg has meant that we’ve been unable to trial any new foods since April, which has been tough for him especially as we’ve just marked one year since we last successfully introduced a safe food into his diet. I knew that his restrictions were taking an emotional toll on M, but nothing expressed more than one he recently apologised to me for feeling fed up and complaining about the fact that he has to eat the same 5 foods day in, day out. As we were preparing for our Portuguese holiday, we quickly realised that, without doubt, our travels abroad would stretch our keen foodie to his absolute limits and we needed to come up with a plan that would allow him to enjoy himself without too much pressure on his health.
This was particularly important as M had been frustrated to not be able to trial the couple of new foods we had pinpointed as pre-Portugal challenges because of his lengthy recovery and was extremely disappointed at the prospect of only eating his safe foods whilst the rest of us enjoyed seafood and fish galore. img_08971After much discussion, both between ourselves and with M too, Mike and I decided that we would allow him the occasional day off whilst we were in Portugal and let him choose a normally forbidden food or two to enjoy.

From the start we made it very clear that this couldn’t be an everyday treat and that between days he would have to keep strictly to his diet and so we planned accordingly. The holiday was split between a short hotel stint in the capital city and a longer stay in a self-catering apartment on the Algarve, which allowed us to cater for M and G as and when was needed. Our medical suitcase had been crammed full of a selection of safe foods for M including cartons of rice milk, cereal and rice pasta as I had no real idea as to what we would be able to find for him where we were based. img_10511Unlike our recent travels to Italy, where allergy-friendly offerings had been easy to find in the airport and service stations, safe foods were not so readily available in Portugal, but our trip to the Jumbo hypermarket just outside of Portimão proved to be a visit to a real Aladdin’s cave. My Mum and I were impressed with the array of dairy-free milks available and chose some new brands of rice milk for M to taste during our holiday. As for the selection of products on the freefrom aisle, I could easily have spent a lot longer than I did examining each and every one of them to see which were suitable for both children.  I managed to buy nearly everything we needed including cookies for G and rice cream for M and the only disappointment was that I couldn’t find a gluten-free loaf of bread for G. img_10521There was several bread mixes available, but there was no way I was ever going to entertain the thought of baking a loaf of bread for her in 35°C weather and so she managed with some delicious gluten- and dairy-free crackers I discovered instead.

M’s experience of eating out with allergies in Portugal was mixed to say the least with the resounding success of two dinners at the Hard Rock Café in central Lisbon in stark contrast to the disappointing first night meal of plain boiled rice and an apple and it was hard to predict what the rest of our holiday would bring. Our translation cards meant that language wasn’t a barrier to making our needs known, but we did struggle with well-meaning restaurant staff offering alternatives even though it was clearly stated that these were the only safe foods he can eat. To be fair, I can understand their difficulty in believing that M’s diet really is that restricted, but it was frustrating to deal with especially when the viable food options were diminishing before our eyes and a certain 10 year-old was hopeful we’d give up and give in and allow him another unplanned treat. For the sake of M’s health, we did have to insist that some of our meals out were strictly M-friendly and the offerings were often mixed. In the UK we frequently find that most restaurants are unable to provide plain rice and so M often ends up with a meal consisting of chicken and cucumber and occasionally some apple too, all supplemented by a bag of slightly crushed Rude Health Mini Rice thins recovered from the depths of my handbag. Portugal was surprisingly no different. We did discover a few restaurants that could cook plain, boiled rice, but sadly this was rarely accompanied by safe chicken and he ended up with some very odd meals indeed.

img_10841However, as well as the Hard Rock Café, we did achieve great success in 2 restaurants in Alvor, where not only was M well-fed, but G enjoyed some great dinners too. The first was at what has long been a favourite of ours, Vagabondo in Alvor itself, a place that the children were keen to go back to again this year. Every year since our first visit there, M and G have loved their chicken kebab starter because of the delicious peanut sauce it is served with and it’s a dish that they’ve asked me to recreate at home time and time again. Peanuts have never been a problem for M in the past, but I was anxious about him suffering an unexpected reaction to them and wasn’t keen to trial them for the first time whilst we were abroad. M was disappointed by my decision, but reluctantly agreed to eat his safe foods only. By the time it came to dinner there, he was still suffering from the effects of some of the other “treats” he’d enjoyed during the week and was happy to stick to his normal diet for the evening. Once our waitress grasped M’s exact needs, she was fantastic at sorting out his meal and advised us brilliantly about what would be safe for him from the menu. img_10851Unfortunately the wild rice was marinated with garlic beforehand so we chose not to order for M, but the plate that arrived contained a huge piece of chicken as well as some cucumber slices and a specially prepared apple from our thoughtful waitress. The apple had been cut and served to resemble chips and so M’s plate looked similar to G’s dinner of a chicken and bacon kebab and chips. It was a large meal, beautifully prepared and he managed to eat every single mouthful.
The second and surprise success of the entire holiday was our final lunch, which traditionally we have always enjoyed at the poolside restaurant at the hotel Pestana Alvor Praia. img_10871In the past the children have chosen gluten-free hot dogs and chips, but we had spotted that they served grilled chicken and rice and were hopeful that these would be safe for M. Once again, a well-informed, attentive and extremely helpful waitress advised me that there would be no problem in preparing these dishes to ensure they were safe for M and in the end both children enjoyed a delicious grilled chicken breast, which was served with chips for G and plain rice, cucumber and apple for M. We enjoyed our meals out on holiday and found all of the restaurants eager to help us as best they could when it came to encouraging M and G to eat out with allergies the Portuguese way.

When inspiration strikes

With the busy-ness of March almost behind me and M trialling cocoa, and therefore dairy-free chocolate, over Easter, you’d have thought that it was definitely time for me to take a step back and relax a little over the long weekend. However, as I’ve found so many times in the past, when inspiration strikes, I just have to respond as quickly as possible or lose the opportunity to act. Call it providence if you will, but the stars most certainly appeared to align on Thursday with the perfect timing of Easter, a different food challenge and a tempting photo on Facebook. It all started when a lovely friend from my Thursday choir shared a photo of the delicious-looking hot cross buns and Easter biscuits she had baked on Thursday. 20140418_154823I made some MEWS-free Easter biscuits a couple of years ago, but I’ve never attempted baking hot cross buns before, so you might wonder, given the complexity of M’s current restricted diet, why I would even begin to contemplate trying to now.

Whether it was the realisation that last week’s food challenge of grapes meant I could possibly create a bake that bore more than a passing resemblance to the “real” product itself, or the addictive sense of achievement that I get when I see the pleasure on M and G’s faces from the taste of something they haven’t enjoyed for a long time, I don’t know, but either way, hot cross buns made in a M-friendly fashion seemed to be a sensible use of my time on Good Friday afternoon – or at least, they did when I was lying awake thinking about it in the early hours of Friday morning itself.

Thanks to the amazing Nathalie of the Intolerant Gourmand blog, I had a fantastic starting point for my hot cross buns recipe. Nathalie’s recipe already replaces some of the main allergens, but M’s list of safe foods meant that I needed to make some more all important tweaks to produce a recipe that would be fine for him to eat. The hardest adaptation for me was replacing the yeast as obviously that’s what gives the bun it’s bread-like texture. IMG_0256[1]After some frantic, yet focused internet research, I found that it was theoretically possible to replace the yeast with a mixture of baking powder and lemon juice and so decided to give it a go.

The dough was surprisingly easy to make and came together really well. I carefully added the cross to the top of the finished buns, popped them into the oven and then spent the next 20 minutes distracting M from what was baking. The end result was not quite as springy as a typical bread dough, rather being a little more like scones, but despite that, the flavours were all Easter and really reminiscent of that popular seasonal treat. I can’t remember the last time that M was able to enjoy a hot cross bun, which probably explains the time it took for him to realise exactly what I had baked – it took me pointing out the cross on top for him to work it out! However, both children enjoyed them and I have to confess to be quietly satisfied with the final bake when I tasted one for myself. Sadly, grapes have not proved to be a resounding success for M, but I’m glad that, when inspiration struck, I took the opportunity to bake him something a little different to eat before reaching that conclusion.

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.

But that wasn’t part of the plan

Without doubt, December whirled past in something of a blur. As I’ve already posted, we had been waiting for an admission to GOSH since last July and naturally it came when we were least expecting it. This admission had been planned by M’s dedicated dietician, who was hugely concerned by the continuing lack of progress we were making when it came to successfully reintroducing food back into his diet and she was keen to challenge him within the hospital setting so that they could see exactly what we were experiencing at home. Our initial discussions all those months ago were in terms of weeks: a lengthy admission, perhaps up to 6 weeks, to fully understand how M’s bowel and bplanody respond when food is eaten; a daunting prospect when you have another child to love and nurture at home as well as a job to hold down.

Move forward 3 months and we reached our October outpatients appointment with no admission in sight and, due to the lack of long-term gastro beds at GOSH, no clear indication of when that elusive bed might eventually become available. Cue the recommendation of a radical rethink and a change of plan to a one week admission, followed by a series of further 1-week stays, scattered here and there throughout the year as and when there was a bed. The gastro team, keen to get him in before Christmas, felt this was our best chance of getting a bed any time soon and so we rolled with the punches and agreed to this amended plan, still not quite clear as to when the admission would actually happen. Over the following weeks, I spent valuable time fine-tuning the details with M’s dietician, agreeing what foods we would choose for challenges during our stay and discussing what the medical team were hoping to achieve through this process. The hardest part remained the lack of a long-term plan. The truth is that M’s continued problems with so many of the foods we’ve tried to introduce is baffling his doctors and until this admission was under our belt, they just didn’t know in which direction we’d be heading next.

By the time M was admitted on December 3rd, the plan had been tweaked again and unsurprisingly would continue to be so during the length of our stay. That one week admission suddenly became a 2-week stay and the 2 foods we had agreed to trial: potato and sweet potato, suddenly became 4: potato, egg, banana and salmon. I had already expressed some concerns about the plan to challenge him with 2 foods in a week and the increase to 4 over a 10-day period was now ringing some serious alarm bells in my head. Mike and I knew full well that the chances were that I would be bringing home a less-than-stable M just in time for Christmas and were resigned to rolling our sleeves up and spending the holidaysSmall-Changes working hard to bring him back to a healthy position ready for the new school term. We weren’t happy about this situation, but felt there was really no alternative; we had to give their plan a try in order to find some answers.

Despite those misgivings, the ones I had fully voiced to everyone and anyone who would listen from the minute I first met with M’s consultant and dietician when we arrived at GOSH and that I continued to express through every step of the following 10 harrowing days, we set off on this plan with the hope that we would find another safe food for him and perhaps even start to understand what has been troubling his gut for so many years.

What wasn’t part of the plan was the continued reluctance of the medical teams in hospital to listen when I told them M was beginning to show signs that all was not well with the food challenges and that he was reacting to the foods;

the plan didn’t anticipate the reality of M’s bowel being so unable to cope that it refused to work properly by the time we were 10 days into the 2-week admission;

and it definitely didn’t include 10 litres of Klean-prep (the worst bowel prep known to man) being continuously pumped into his tiny body over a 6-day period in an attempt to clear the resulting chronic impaction.

Nowhere in the master plan had I seen fair warning that, by day 14, I would be rendered utterly helpless and only able to sit, holding his hand and massaging his aching limbs, as M was left bent double from the cramps that were consistently hitting an 11 on the pain scale, where 10 was classed as the worst pain imaginable.

dancing-in-rain

Somehow we limped through endless hours of pain and frustration and dashed hopes, and we survived. Somehow we talked and ranted and sobbed and challenged until finally the medics acknowledged that things had gone horribly wrong, and we survived. Somehow we managed to stand strong and stay strong and stand our ground and refused to compromise on what we knew was in M’s best interest, and we survived. Somehow we rode out the fiercest storms and learned to dance in the rain, and we survived. Somehow we found enough humour in each day to keep the smiles on our faces and to laugh the smallest of giggles, and we survived. Somehow we got through the unexpected and started to find our way back to our normality, and we survived.

But that wasn’t part of the plan.

“Run, run as fast as you can…”

“…you can’t catch me, I’m the gingerbread man!”

To be perfectly honest, the last couple of months have been challenging ones. When we made the decision last year to move M to the elemental diet, we did so hoping that it would be the answer we were looking for and that he would finally find some relief from the years of chronic pain and constant bowel problems he’d barely been surviving. The great news is that his symptoms improved dramatically and for the first time in a long-time, M felt healthier and happier than ever before. However, despite the best hopes of GOSH that his NG-tube would only be needed for 2 or 3 months, Mike and I held the opinion that it would more realistically be in place for at least a year, if not longer, and we are rapidly moving closer to that 12-month mark. Of course, what none of us had anticipated was the struggle we would have in reintroducing foods back into M’s diet and over recent weeks, he has found the constant disappointment of failed food trials and the frustration of not being able to eat the same as everyone else almost unbearable to live with. With the agreement of our amazingly supportive dietician, we decided to take an extended break from the challenges, allowing M some much-needed time to come to terms with the realities of life right now.

shutterstock_190648280Having had that much-needed rest, M started to lose that haunted look that had been plaguing him for a few weeks and we finally seemed to have turned the corner and be back on track. We agreed on a new short list of foods to challenge in the run up to Christmas and had finally restarted where we had left off, more or less. However, last weekend, with another 3 unsuccessful attempts at reintroductions to chalk up to experience, tensions started to build and emotions threatened to overwhelm the tenuous calm that had just begun to settle. The final straw broke when G asked Mike and me to taste and review her cupcakes for her Food and Textiles homework. With hot, angry tears cascading down his cheeks, M crawled on to my lap to fitfully confide that it “just wasn’t fair” that everyone else could eat cakes when he couldn’t. Gently stroking his back, I offered to whip up a batch of one of the few sweet treat recipes I’ve managed to adapt for him in the last 12 months: Rice krispie treats? Cupcakes? Scones? Sugar cookies? Nothing seemed to quite hit the necessary mark, so I put my thinking cap on, did a little research and came up with the perfect pre-Christmas treat – Gingerbread!

Thanks to a few sneaky “mini” challenges, we have been able to add some extra flavourings to M’s diet and the most recent success was the addition of ginger to the humble pear crumble, so gingerbread seemed to be the logical next step. I started pulling the ingredients from the cupboards and, 20151121_162110as I weighed and measured out everything I needed, M’s interest was piqued and he pulled up the step-stool to stand by my side and help out. He rolled up his sleeves, washed and then floured his hands and, having selected an interesting array of cookie cutters, brandished my trusty rolling-pin to roll out the gingerbread dough on my pastry board. He chose to use the Christmas cutters as well as the odd one or two Mr Men ones, which have survived from my childhood and spent hours planning out to most effectively cut the shapes from the dough in front of him. We ended up with an impressive batch and I am heartily assured by my trustworthy taste-testers that they more than fit the brief and hit the mark!

Quick update

Stocks-Update-1With 2 weeks left to the end of term, there’s so much going on that I’ve barely got time to sit down and commit any useful thoughts to paper, so I’m afraid this post is just going to be a quick update.  We’ve just had our first appointment in the new “Complex gastro and nutrition” clinic that our consultant and lovely specialist dietician have started at GOSH.  The thinking behind this new clinic is that for children like M, who have a chronic gastro condition such as EGID as well as significant, complex and multiple food allergies, there needs to be regular meetings with both a gastro consultant and a dietician to ensure that everyone is singing from the same song sheet when it comes to treating the health of that child.

Hospital appointments always induce mild nerves in me, but this time round I felt more apprehensive than usual.  We are now into month 8 of the NG-tube, when the initial plans were that M would have it for no more than 3 months at most and I was concerned that there might be discussion about removing the tube in the near future.  M’s health has been so significantly improved since we went elemental in December that I don’t want to rock the boat any more than is necessary until we have a huge improvement with his diet.  generic round label_1265358343With only 4 foods on our “safe” list out of 12 tried so far, it has been a much longer process to reintroduce foods back than any of the medics expected, although, to be honest, Mike and I had always anticipated it taking a full year, if not longer.  At the moment, M is coping well with his tube and is keen to keep trying new foods, so there are no concerns that the presence of the tube is having a detrimental effect on him in any way.

So, in a snapshot, the outcome of our appointment was this:  that on almost every level, his health is remarkably stable right now and even his hay fever isn’t causing too many issues this year; but the area of most concern continues to be his ever-growing list of multiple food allergies.  Our dietician is very worried that M is struggling to tolerate so many foods and now refers to him as one of her “biggest, but loveliest challenges”.  The process of reintroduction has been so slow that until we have at least another 2 or 3 back in his diet, we cannot change the amount of E028 he’s having via his tube and so the tube obviously needs to stay in place.  We have chosen the next 5 foods to try – white fish, pear, GF oats, venison and coconut – and will also be doing some mini-challenges to see if we can have some more spices and flavourings to add into my recipes.  I will continue to remain in regular phone contact with her throughout these trials and we will keep persevering with the food challenges until our next scheduled appointment in around 4 months time.

A cake for every occasion

We might have had Christmas, Easter and at least 2 birthdays since M first had his NG-tube, but they’ve all been celebrated without a morsel of cake passing his lips for 7 months.  He enjoyed Foxes Glacier mints for Christmas lunch, a “fake” cake for his birthday and a passable rice-flour biscuit for Easter; but we were all fully aware that none of them could possibly replace the role of cake in so many celebrations.  PV-2The harsh reality of so few ingredients has meant that even at my most inventive, a successful cake replacement has just not been achievable, but with the re-introduction of apple in the last couple of weeks, M’s dream of cake could, and has, finally been fulfilled.

It is all thanks to one of the lovely Mums that I have become friends with through FABED and whose son, under the care of the same consultant as us and who M met during his hospital stay last December, is a few weeks ahead of M with his food reintroductions after time on the elemental diet.  R and I have spent time chatting, texting and e-mailing about the boys and where we each are along our respective journeys, sharing stories and giving tips whenever possible.  Having gained the advantage of those few extra days, R has had some useful tips when it’s come to preparing food for M, the best one being this M-friendly cake recipe that I was able to try out at long last.20150626_144401

Apple purée is a popular egg-alternative, though not one I have previously used in my M-friendly baking as I have preferred to bake with ground flaxseed meal or mashed banana. With banana being a definite no for the time-being and flaxseed being low in our priorities of new foods to trial, it was finally time to put apple purée to the test. The first job was to prepare some apple purée before having to deal with the tough task of stopping M devouring it all at each and every opportunity that arose until I had a chance to actually try out the cakes. Despite his best efforts and enjoying lashings of purée with his rice pudding, there was just about enough leftover for these delicious apple and rice flour cakes.  The recipe is simple, easy to follow and perfect for anyone with such limited safe foods and, what’s more, I’m certain that it would be easy to replace any of the ingredients with an alternative that suits your particular dietary needs. The cakes are deliciously moist and have been a huge hit with M, who is asking for them morning, noon and night and are definitely a great addition to his school lunch-box.