Tag Archives: food challenge

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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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 that more than when 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.

“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.

Another food and an unexpected insight

This moment has been an awfully long time coming, over 4 months and 7 food fails in a row in fact, but finally we have a fourth safe food to add to M’s repertoire: apple.  The last few months have been emotionally tiring as we’ve worked our way down the list of food challenges agreed with our dietitian and M has systematically, and holy-grailsometimes dramatically, failed each and every one.  It has felt as if that elusive fourth food was our personal Holy Grail and there were times when Mike and I both began to wonder when we would ever achieve it.

One of the complicating factors we’ve had to deal with during the food challenges has been the whole host of reactions that we’ve seen along the way.  We were never told, as far as either of us can remember, that it was possible to see so many different allergic responses to the varying foods M was trialling and we were certainly not advised that he could experience some that he’d never had before.  His severe oral reaction to sweet potato was, in many ways, the easiest one to identify, even though horrendous to see happen, as we knew immediately that it had to be an instant fail; but the others have not necessarily been so straight-forward.

complicatedOur main goal is to maintain the improved health and toileting that M has achieved since he first went elemental back in December and even though that has meant ruling out some foods that would have been great to have back in his diet, I remain firm that his well-being, both physical and psychological, is our primary concern.  At our last appointment, we discussed with both M’s consultant and dietitian our approach to the food challenges and agreed that anything that causes a loss of bowel control, of any description, has to be considered an instant fail for the time-being. These foods are not ruled out permanently – well, sweet potato is as far as I’m concerned! – and we will, without a doubt, revisit them at some future point once we have more safe ones back.

Sadly he has reacted to some of his old favourites, but he has coped admirably well with accepting the outcomes.  He still remains reluctant at times to acknowledge exactly how he is feeling and telling us about the aches and pains we know he must be experiencing, but 9 years of parenting M means that I have become highly attuned to his moods and can sense when he’s feeling under the weather.  His willingness to lose a food again at times has indicated to us that he also identifies when it’s making him feel poorly, especially when he has been prepared to fight for those that he believes he can cope with.

Never was that so true as at the start of our apple challenge.  During the first couple of days, his body reacted with hives and itchy skin, just as we saw when we first reintroduced rice and he also struggled a little with his bowel control.  However, unlike with other foods where he has reluctantly agreed that it was likely a negative response to the challenge, this time round M insisted that the fault was his for not listening to his body and responding quickly enough and that he felt he was still in complete control.

10 days on and he has proved to be right, which is a valuable lesson for us all:

We have spent years fighting for our voice to be heard when it has come to M’s health and each step of the way have been shown to be right in our concerns and our thoughts for his ongoing treatment.  It seems that now we need to start listening to what M has to say too and take into consideration his opinions and insights about his body.  Of course, at 9 he is nowhere near old enough or responsible enough to make his own choices or sway our decisions unduly, but, just as I have spent a long time arguing my place as the expert on the subject of M because I’m his Mum, now as Mum I need to encourage him to be his own best advocate and take an active and involved role in his care.  After all, that’s a key part of my parental role.apples7

And whilst I ruminate on this latest insight into M’s development, I’m eagerly gathering ideas and recipes to incorporate apple, in all its glory, into his diet.  So far, we’ve ventured little further than apple juice, apple slices and apple pancakes, but with the help of good friends, including one whose son is just a few steps further down the food challenge road than M, and great resources such as The Recipe Resource, then apple crumble, apple crisps and apple cakes are all on our horizon.

 

Feast or famine

There are times when recipes, just like buses and blog-posts, can be hard to find and then, just when you think you’re in for the long haul, a whole host of them appear from nowhere and flood your every waking moment.  Over the last few weeks, I’ve been desperate to find some more alternatives to plain chicken and rice to tempt M’s taste buds and it is thanks to some canny suggestions from M’s dietitian, a lovely reader and even my hairdresser that this past fortnight has seen me trialling some new inventions of my own.

or-kitchen-gf1Today’s recipe is one that might not appeal to everyone, but it has certainly been a huge hit with M:  Chicken Liver pâté.  Both G and M love pâté and when they were little, I found a quick and easy recipe and regularly used to make my own.  I’m not quite sure why it didn’t cross my mind to revisit this recipe in recent months, but thanks to a throwaway comment from our lovely dietitian about the possibility of cooking lamb’s liver and kidneys when M trials lamb, Chicken liver pâté suddenly sprang to mind. I spent a productive hour or so flitting between my computer and my recipe books, searching out traditional recipes as well as some that are dairy-free and quickly came to the conclusion that, with a clever few tweaks and variations of my own, this was definitely something I could cook up for M.

20150602_182343The base ingredients are easy to source: chicken livers, oil, rice flour, rice milk and herbs and seasonings; and I think that the recipe is easy to follow.  In my latest batch, I also added the last remaining drops of the “Rice whip” rice cream I had managed to buy months ago, which gave the pâté a creamier texture, but isn’t necessary to make a spread that everyone can enjoy. The pâté has given M another fab alternative to the monotony of his daily meals and he’s currently loving his pâté “sandwiches” (rice cakes with pâté) for lunch, instead of the dry alternative.

20150610_175428Pâté perfected, it was now time to put my second plan into action and create a M-friendly version of Beef Wellington.  Sadly at the moment for us there can be no pastry, mustard, mushrooms, crepe or indeed beef, but there is chicken, chicken liver pâté, cucumber and rice and that, I decided, was more than enough.  I carefully cut into a chicken breast and created a pocket, which I filled with thin slices of cucumber and lashings of the pâté.  I coated the filled breast with a rice crumb and then oven-baked.  M tucked into it heartily last night and devoured the lot, which was just amazing to see.  So that’s another dish to add to my repertoire, though perhaps the end result was more “Chicken Kiev“, than “Beef Wellington”, a “Chicken Wellington” you might say!

 

Why #allergyawarenessweek is important

This week is Allergy UK’s #allergyawarenessweek and their aim is to raise awareness of the serious, and sometimes severe, impact of allergies on everyday life.  Their campaign #livinginfear has invited allergy sufferers to talk about the frightening side of allergies, not least of which are the statistics that show an astonishing lack of knowledge about how to deal with serious allergic reactions amongst the general public.  Recent research carried out by Allergy UK shows that 44% of allergy sufferers in the UK are living in fear of a serious reaction, whilst 68% of the people surveyed wouldn’t know how to deal with a reaction; and this lack of public knowledge could be forcing sufferers into a life of fear and anxiety.  This useful infographic published this week uses the acronym FEAR to educate us all on how to recognise, help and potentially save the life of someone struggling with a severe reaction:

Courtesy of Allergyuk.org

Courtesy of Allergyuk.org

Whilst M’s allergies are extensive and challenging, I have always been extremely grateful that he has never suffered anaphylactic shock from anything he has eaten, although the question of whether he could experience one has floated at the back of my mind for quite some time.  We were lucky enough to be able to bring home a training epi-pen after our visit to the Allergy UK annual conference in 2014, though other than a cursory look when it first came home, I have to confess it’s been gathering dust in a box on top of one of our kitchen cupboards since then.  We’ve even gone as far as discussing, late at night, whether we should have an epi-pen on hand at home “just in case”, but I’m ashamed to admit that that is as far as we’ve got in actually doing something about it.

Courtesy of foodb.ca

Courtesy of foodb.ca

However, less than a month ago that decision came back to haunt me and I learned unexpectedly just what the reality of the #livinginfear campaign could be like.  We were trialling sweet potato with M, a previous favourite that we were desperately hoping would bring some much-needed variety to his meals.  The first mouthful on that first Friday night had been eagerly received and much enjoyed by M and although the following day was a little more fraught on the toileting front than it had been for a long time, we hoped it was nothing more than a temporary blip to be overcome.  We ploughed on with the food challenges and M had taken to waxing lyrical about how much he was looking forward to including sweet potato in his diet once again.  He even asked how long it would be before he could enjoy a “whole baked potato” once again.

It was at the 3rd meal and the increase to 2 teaspoons of mashed sweet potato that things suddenly and rather dramatically went horribly wrong.  Mike, rather typically, was out for the evening at a charity whisky-tasting event and it was just me and the children enjoying our evening meal at home.  M tasted his mouthfuls of the mash before anything else and then got on with the rest of his dinner.  He got no further than half-way through when he suddenly grabbed at his throat and started gulping down mouthfuls of his glass of rice milk.  He complained that his tongue was stinging and itchy, his whole mouth was itching and it felt as if someone had grabbed his throat and was squeezing hard.  Two glassfuls of milk later and a frantic phone-call to Mike about what was going on, things settled down and M was feeling a lot better.

I had spent those 20 minutes just about holding it all together, whilst running anxiously through all the possible scenarios in my head and trying to work out what I needed to do if things took a turn for the worse:

  • Option 1 – Jump into the car with both children, trying to keep as calm as possible and race to our local hospital, 20 minutes away and with no car parking options on site:  I’d get there, but what if he stopped breathing in the car and I needed G to get involved, even if it was just by using my mobile to phone for back-up?
  • Option 2 – Dash off to one of several nearby friends who are also doctors and ask for their help:  much quicker, but at least one of those was at the same event as Mike and who knew whether the others would be at home
  • Option 3 – Call 999 and wait anxiously for an ambulance to turn up, all the time acting as the proverbial duck (calm on the surface, but paddling furiously beneath the water): how long would it take for an ambulance to reach us? Could I keep both children calm at home as we waited? What would I do if M stopped breathing? What would I do with G if we needed to rush off to hospital?

We were lucky.  The reaction passed, although the stinging pain in his mouth and throat and the sensation of his throat tightening returned at odd times over the next few days.  Following a lengthy conversation with our GOSH dietitian, it seems likely that M actually suffered an oral allergy to sweet potato rather than full-blown anaphylaxis, though it doesn’t quite fit with the known causes and triggers of Oral Allergy Syndrome.  If you are interested to learn more about living with OAS, then I highly recommend the blog Feeding my intolerant child, whose description of her son’s oral reaction to a simple fruit ice lolly whilst on holiday is definitely reminiscent of those frightening moments at home a few weeks ago.

epipenNeedless to say, sweet potato has been banished from M’s diet for the foreseeable future and we are now seeking a local allergist who can help advise us on dealing with any other more serious allergic reactions that M might experience as we continue along the food reintroduction road.  Oh yes, and we’ll also be pleading to get him an epi-pen for our own peace of mind and for the sake of his well-being and I will make sure that we all know how to administer it correctly.

Home or away?

IMG_0746With a trip to London for M’s GOSH appointment an unavoidable part of the Easter holidays, we decided to make the best of it and spend a few days there on our very own mini city-break.  In preparation we spent one Sunday afternoon leafing through the pages of Mike’s “501 Days Out” book, looking for inspiration for what we could do during our stay and  G and M quickly filled a sheet of A4 with their suggestions.  It was left to Mike and me to make the final cut and hone our plans and, despite desperate requests for Legoland Windsor and Chessington World of Adventures, we decided to stick to those attractions within a reasonable distance of where we’d be staying and drew up a list that felt exhausting just looking at it.

where_to_stayThis epic event was our first overnight stay away from home since M had his tube back in December and I drew up thousandshundreds…well one very long list of everything I needed to do in preparation.  My first job, once our trains were booked, was to find somewhere to stay that would meet all of our requirements.  Usually we choose to stay in one of the Premier Inn hotels on the south-side of the Thames, be it near the London Eye or closer to Southwark Cathedral and find them a great base for walking, or using the underground, to almost anywhere we’re intending to visit.  Unfortunately, leaving the actual booking to a little late in the day meant that none of our usual suspects of hotels was available for the 3 nights we were planning to stay and instead I had to search for a suitable alternative.  Whilst browsing frantically looking for a room at the….an….any inn, I came across the option of a serviced apartment and things suddenly started to fall into place.

We chose a one-bed apartment in East Aldgate, not too far from the Tower of London and easy walking distance from the nearest tube station.  The benefits seemed huge:

  • with a separate bedroom and pull-out bed in the living area, G would be able to go to sleep at a reasonable time, whilst M played his usual night-owl games
  • there would be plenty of space to store all of M’s medical gear as well as the supply of safe foods for both him and G that we would take with us
  • having a kitchen meant we could easily prepare M’s feeds, make packed lunches and even cook dinner, thereby covering every possible meal-time option we might face
  • it also meant we would have a fridge to keep cooked meats, cheese for G and M’s feeds in overnight without the need to request one beforehand and then keeping our fingers crossed it would be available when we checked in
  • finally, we would have a quiet place to retreat to when things got too much or the children needed some down time in the middle of the day

So it was an easy decision to get that apartment booked.  The days flew past until finally I had no choice but to tackle the task of packing for our trip.  By the time I had everything I needed for M in the case, plus our supply of safe foods for both G and M, I was beginning to wonder whether I’d have room for any of the clothes the 4 of us would need for 4 days in London.  With some canny packing and careful choices about exactly what was necessary, I just about squeezed everything in and we were ready for our next big adventure.