Tag Archives: Great Ormond Street Hospital

NEAW 2015 – E is for Educate

It’s difficult to believe that National Eosinophil Awareness Week (NEAW) is once again with us and we have been, believe it or not, even busier this year than last in spreading our message about life with EGID. I’m hoping to again post a blog a day to raise awareness and this year have decided to follow the theme of NEAW, which uses the word E-D-U-C-A-T-E to do it:

Today’s letter is E for Educate.

This year we have been focussing our energies on educating those around us and around M about EGID.

How? Well. in the last week I’ve been interviewed on our local BBC radio station, featured on the front page of our local newspaper and last night we had a display and raffle at a local choral concert. During the week ahead, M will be sharing his story at school via a PowerPoint presentation that he and G worked together to produce and later in the week, I’ll be sharing that video with you all.

Why? Because awareness is key. The more people who know about EGID and trust me, the number of medical professionals who have even a passing knowledge of this chronic illness is staggeringly low, let alone the general public, the greater awareness of it there will be, which in turn means better support for children and adults like M and families like ours. Not only is there little understanding, but there is also an astonishing lack of funding for research into gastrointestinal disorders in the UK. Without medical research, then it is highly unlikely that approaches to treatments will improve and nor, by default, will the quality of life for these individuals.

What can you do? Re-read my explanation of EGID and then spread the word by talking to someone about EGID and explaining what it is. You can share these blog posts this week and ask friends and family to share them on too. Keep an eye on my FB page and Twitter feed to see who else is sharing information for NEAW 2015. Find out more about those charities supporting families living with EGID: FABED in the UK, Apfed in the USA and AusEE in Australia. Change your FB or Twitter profile picture to one of those promoted by FABED or Apfed even for just one day. Be more aware and know that by knowing something about EGID, you are helping support M and others like him.

“Elementa(l)ry, my dear Watson”

London: our whistle-stop tour

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With our appointment at GOSH over, we then focussed our attention on the activities we’d chosen for the rest of our London stay. We had narrowed down our choices from the lengthy starting point created by G and M and suggested that each child chose 1 activity each that they really wanted to do on this trip: be that museum, park, art gallery or tourist attraction. G quickly settled on the Imperial War Museum, M picked the London Eye and Mike and I agreed on booking tickets for a show as well as attempting to complete the amazing “Shaun in the City” sculpture trail. It was, without question, an ambitious plan, but with some careful planning and the agreement of both children that the amount of walking required would far outweigh the maximum moaning I was prepared to accept, I was confident we might just be able to squeeze it all in.

Imperial War Museum

This has been on our “hit list” for quite some time, but our previous 2 attempts to visit had both been scuppered by an extended closure to prepare the exhibits marking the centenary of the start of WWI last year. With nothing to stop our visit this time, we travelled across London via tube and finally convinced our pair to head inside after the requisite ~~hundreds~~ tens of photos had been taken of the impressive naval guns at the front entrance. G was keen to work her way through the WWI exhibits, whilst M had a yearning for learning more about being a spy and Mike was intent on seeing the Holocaust display. I had allowed a full day for our visit and we certainly needed it. There was an incredible mix of posters, photos, short films, interactive displays, war memorabilia and oodles of facts to work our way through and the children were able to dip in and out of the information as they wanted. We lasted until mid-afternoon before G and M started to flag, interest was lost and we made our way back to the apartment for a little downtime before we headed out for dinner.

The Railway Children – near Waterloo Station

In the run up to our visit, M had spotted an advert for “The Railway Children” and was keen to see the show. As this was a perfect opportunity to watch a play, rather than the musicals or pantomimes we usually attend, we agreed to get some tickets and had great seats near to the front of the seating area. M and G loved that the characters came out to talk to the audience before the play started and were enthralled throughout. I won’t spoil the experience – but it does include a real steam train and the most amazing staging I’ve seen in a long time – and would definitely recommend going to see this fabulous classic if you have the chance.

London Eye

This has quickly become an instantly recognisable icon on the London skyline and is actually something the family has done before. Every time we head to GOSH for an appointment, M begs for a trip on the Eye and every time I say no, not least because it’s actually nowhere near the hospital and our regular visits are almost always somewhat tight on time. Having given them free rein to choose one thing they each really wanted to do, it was no surprise that this was M’s selection. The 30-minute revolution offers spectacular views across London and both children were fascinated with trying to pick out various buildings they knew from the pod. I was also impressed with the thoughtfulness of the member of staff directing people into the waiting lines. You can easily end up queuing for around 20-30 minutes, which is never ideal when you have children in tow and definitely not when one of them is sporting a litre feeding bottle and pump on his back. This lovely lady spotted us in the queue with M and invited us to enter via the fast-track system instead, stating it was “.,just too chilly..” to be standing around waiting. Of course we all realised that M and his tube were the real reason behind her kind offer, but appreciated her not making a fuss about it and simply offering us an alternative that would make life a lot easier and our experience a lot more fun.

Shaun in the City sculpture trail

Just one of the many Shauns we found

Yet another sculpture trail to echo a multitude that have been seen across the UK over the past few years, including the Paddington Bear one we dipped into whilst visiting the poppies at the Tower of London last November. This year’s trail was based on Nick Park’s popular character, “Shaun the Sheep” and featured 50 sculptures, each individually decorated by a host of celebrities, found at strategic locations around the capital. The sculptures were split into 5 groups – 4 distinct trails and then 5 “lost sheep”, who were not particularly close to any of the other ones – and most were close enough together to allow us to attempt to find nearly 40 of them in one day. G and M’s aim was to find and be photographed with all 50 before our trip was over and we managed it, though with very little time to spare before we needed to catch our train home. These London sculptures are only in place until 25th May and then there will be 70 Bristol counterparts during July and August. Later in 2015, all 120 will be auctioned to raise much-needed funds for children’s hospitals across the UK through Wallace and Gromit’s Children’s charity. We loved following the map before finding ourselves in parts of London we wouldn’t normally visit and there’s a real camaraderie between fellow Shaun-spotters you come across along the way. You can find out more about the “Shaun in the City” trail here.

Stomp – Ambassadors Theatre

Courtesy of http://www.ticketmaster.com

Our final treat was unplanned, but was definitely a winner. Every time we travel up, or down, the escalators at tube stations, G and M love to look at the advertising posters that adorn the walls. If you ever hear cries of “Seen that one…and that one…but we haven’t seen that,..yet!“, then it’s a fairly safe bet that we are somewhere in the vicinity. Stomp is one of those productions that they’ve been longing to see for quite some time, but we’ve been reluctant to go because G, in particular, doesn’t cope well with loud noises. Our search for Shaun led us into Leicester Square and the hordes of theatre ticket booths that can be found there. For those not in the know, these sell last-minute tickets for many of the numerous shows being performed in London at any given time and often represent great value for money due to the discounts they give. We decided to see if we could get some discounted seats for Stomp and were delighted to have the choice of 4 prime seats on the second row of the circle. The children were a little shocked to learn that there was no interval in the performance, but were even more surprised at how quickly that 1.5 hours passed notably as they were left wanting more. The skill of the performers is phenomenal, especially when you realise that you hear no words and no music for the duration of the show, but are totally absorbed by the percussive masterpieces they produce. Another fantastic show that we’d highly recommend.

We even managed a trek across Tower Bridge on our travels

So, it was definitely something of a whistle-stop tour of the capital for us this April, but a great break that we won’t forget for a while.

Because #livinginfear is not just about the allergies

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I wrote yesterday about the #livinginfear campaign and started thinking about what that really means to me. I quickly realised that #livinginfear is not what I want for M or, indeed, for G. It is so important that they are both aware of their allergies and that M, in particular, could suffer adverse reactions to the foods he eats. They must take on responsibility for their own health when away from home and have an understanding about what they eat and what they have to avoid. They need to know how to deal with mild reactions and how to communicate their needs to the people around them, especially when in new situations, or when Mike and I are not there to speak up on their behalf. After our experience with the sweet potato trials, they now know that there could be other, more serious reactions that M’s not experienced before and that they could be frightening. Most critically, I need to teach them how to respond calmly should those reactions occur.

However, the most important thing is this: that my children are still children and whilst living with a chronic illness has forced them both to grow up a little faster than their friends and peers, I don’t want them shouldering adult worries or concerns, or feeling weighed down with fears that may never be realised. Until the point when they reach their majority, I want my children to laugh, play and simply live each day as children, trusting that Mike and I will always be there supporting them, ready to catch them when they fall.

The truth about #livinginfear for us is that it is my burden to bear and is about more that just the potential for serious allergic reactions. My fear is not even about M possibly suffering from anaphylaxis one day as, although the prospect of facing that is daunting, I trust that my parental instincts and ability to stay calm under pressure would get me through that most difficult of experiences.

No, that weekend highlighted for me what my true and biggest fear about his allergies and his health really is: that I will not be believed…that I will become “that” parent…and that the health professionals involved in my child’s care will doubt what I say, thinking I’m causing a fuss about something that is simply not true. The years spent chasing a diagnosis despite everything the doctors were telling us have taken their toll on my self-belief. I second guess myself at every turn. I discuss and dissect and deliberate my every waking thought about M with Mike to check that I’m not going mad, that he, at least, understands where I’m coming from and that I’m not being unreasonable or over-reacting to the situation.

Nothing demonstrates that self-doubt more than the fact that I insisted we tried M on the sweet potato again the following day when Mike was there, just so he could see the reaction for himself and confirm that what I had seen, and M had experienced, was true. Despite my natural concerns that it could have been an anaphylactic reaction, I needed Mike to be an eye-witness to it too and I had our back-up plans in place, just in case his response was even worse that time round (fortunately it wasn’t). I didn’t want to put M through the terror and pain of the reaction again, what parent would, but I needed to be certain that I hadn’t imagined it to be more extreme than it actually was.

I know that my confidence has been shattered by the very people who should have been supporting me and my family every step along the way – the medical professionals we’ve encountered on our journey. I am no longer comfortable in trusting my gut instincts about M’s health, even though I have been proved right time after time after time; and that’s simply not acceptable.

Being a parent is a hard enough job when you have a happy, healthy child – there are no superheroes living in secret in my local community as far as I’m aware; but the burden quickly becomes overwhelming once you throw a chronic illness into the mix. I find myself not always being able to state my case clearly or argue M’s corner when it matters most and I lie awake worrying in the middle of the night that the treatment I’ve demanded may not be the best course of action, or whether there was anything I forgot to mention at the most recent appointment. I know myself to be a strong, intelligent woman and yet I find myself being instantly returned to my school days, with all the mixed emotions of being sent to see the Headmaster, the minute I find myself facing a consultant.

And I worry that G is getting lost in the chaos that is hospital stays and food allergies and medicines and diagnostic tests and the relentless need to monitor, record and report everything. As she approaches her SATs and the prospect of moving up to “big” school looms ever nearer, my firstborn is growing up fast and I wonder how our relationship will survive the inevitable traumas of her teenage years when my focus so often has to be on her younger brother. Time together is rare and incredibly precious and something we both need and enjoy because I’m fully aware that I’m not necessarily getting this parenting thing right.

So, raising awareness this week has to be not just with the general public, although that is undoubtedly critical to protect the allergy-sufferers around us, but within the medical community too. For most of us, you are our firefighters and the people we are forced to depend on in our darkest moments. We need you to be strong, focussed and the experts that we are not, BUT we also need you to be gentle, compassionate and understand that you are holding the future of our most precious possessions in your hands. Don’t dismiss our concerns, but believe that we know our children best and have an insight or opinion that is just as valid as your professional one. Don’t belittle our emotions, but be empathetic when they overcome us and we need a shoulder to cry on more than anything else in that moment. Be honest, but in the kindest way, knowing that your words have the power to break us when we least expect it. Most of all, understand that we are constantly #livinginfear about our children’s health and life, so they don’t have to.

Why #allergyawarenessweek is important

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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

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

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.

Needless 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?

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With 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.

This epic event was our first overnight stay away from home since M had his tube back in December and I drew up ~~thousands~~…~~hundreds~~…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.

Back to work for a rest

A tri-umph of rice-themed goodies!

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Recently I’ve been spending my time baking and cooking up a whirlwind as the days ahead have been looking busy. With a day for G and M at the holiday club run at Mike’s work, an appointment with M’s consultant and dietitian at GOSH to review his progress 4 months post-tube and a planned short stay in London to see the sights and to dip our toes into the world of being away from home with NG-tube in tow, a plethora of safe snacks and treats for M were much in need. I prepared rice pudding, rice-flour sugar cookies and rice krispie cakes to satisfy the appetite of my youngest and to reassure myself that we would have some things with us to feed him whilst the rest of us enjoyed some much-missed meals out. I also used the opportunity whilst trialling banana to add some to the mix and made some banana sugar cookies too.

The recipes can be found in the everything-free recipes section and are so easy to follow that next time round, my plan is to be sitting back with a cup of tea, whilst G and M get on with the task of creating their own delicious masterpieces!

Who knew you could make so much from rice, sugar, rice milk and canola oil? Any other suggestions for simple recipes will be very gratefully received!

A Whodunnit birthday!

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In the past 3 months, we’ve conquered Christmas, survived the return to school, managed the mysteries of the NG-tube and, most recently, started to tackle the tricky business of food re-introductions, Now it was time for my biggest challenge yet: M’s birthday party.

As G turned 11 back in December when M and I were in GOSH and we didn’t get to mark it in any great way, I wanted to make sure she could celebrate her day with her friends albeit belatedly. By the time Christmas had passed, the new year was in and we got round to making plans, half-term was fast approaching with M’s birthday hot on its heels. I tentatively suggested we threw a joint party, not at all sure what response I might get and was delighted when they leapt at the chance. Next came the trickier job of agreeing what to do and even though many ideas were bandied around, we struggled to come to a compromise that suited them both. With M keen to do LaserQuest or rock-climbing and G hankering after bowling, a final decision seemed impossible to reach until, in a rare moment of like-mindedness, they put their heads together and came up with the idea of a Cluedo-themed birthday party.

The first step was to set the scene for the murder of Mr Black by choosing enough character names, crime scenes and potential murder weapons to accommodate 16 children. We started with the original lists of the game itself and added to them, ending up with 10 weapons, 10 rooms and 16 characters, which G and M allocated to each of their friends in turn. I designed and then created the invitations to be handed out at school, inviting the children to join in the birthday celebrations for Captain M Emerald and Countess G Pearl.

Naturally, the finer details of exactly how the party would be run were left to me, but I loved the idea of a murder-mystery style party based on this classic board-game and have spent much of the last 4 weeks planning, preparing and perfecting each element of the day. The children had lots of ideas about what they wanted to do and we ended up with a series of games, activities and refreshments that would prove to keep the most picky of 11 year-old girls and most active of 9 year-old boys happy for 2 hours. Each game was attributed to one of our 16 characters, so the guests had the opportunity to test their skills with a Nerf gun at Colonel Mustard’s Shooting range or joined in the pottery painting classes run by Mrs Peacock and Lady Lilac. We wanted the children to still experience the original aim of the game and work out the who, where and how of the murder, so every activity they did gave them the opportunity to reveal more cards to eliminate suspects from their lists. This could be as simple as decorating a cupcake for Reverend Green’s church fundraiser to see 2 cards, or as revolting as delving deep into Mrs White’s giant trifle to pull out another one. Everybody had a chance to try their luck at each of the games and they all had a whale of a time.

As M is still very limited with the foods he is currently able to eat, I decided to avoid a traditional party tea and instead served a dessert buffet, which included pineapple and Foxes glacier mints, both of which are safe for him. He was also involved heavily in the decision-making about which cakes, biscuits and sweets would be on offer to his friends, which meant he was aware of what his friends would be eating and was happy to sit with them and chat as they all helped themselves to the selection of treats. The final party game was “Pass the revolver”, which saw the children completing forfeits to see the final 2 Cluedo cards before they had to reach their conclusions and share the results of their investigations. Nobody successfully worked out all 3 murder cards, though there was a small cohort who managed to work out 2 of the 3 elements correctly. We finished with the traditional rousing renditions of “Happy Birthday” and then sent our guests on their way. Both G and M loved every moment of their Cluedo birthday party and the text messages I’ve since received have assured me that their friends had a great time too. In the words of one of M’s friends, it was “the best birthday party EVER!“

“I like rice…

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..Rice is great if you’re hungry and want 2000 of something.”

– Mich Ehrenborg

I never realised just how daunting food could be until we embarked on our dietary journeys with our children. It might sound ridiculous, but having achieved such a resounding success from M’s move to the elemental diet, the prospect of food reintroductions caused my heart to beat a little faster, my palms to grow a little sweatier and several middle-of-the-night awakenings to contemplate just how the whole process would work. A big part of the problem was the lack of ~~useful~~ any information from the dietetics team about…well about anything I wanted to know. I like to have a clear plan to follow and needed to understand how we would choose which foods to start with, how each food should be prepared, how much to give and how often. The vagaries of sweeping statements such as serve M “a portion”, with no hard and fast details of the specifics drove me insane, but with lots of discussion, frantic e-mailing and a move back to our old and trusted dietitian rather than the one I’d had run-ins with during M’s admission, we finally got the answers we were after.

Courtesy of alternative-doctor.com

The decision was to begin with rice, commonly considered to be hypoallergenic and therefore a great starting place for M. Whilst many children reintroducing foods following the elemental diet might trial potato first, this was one of the known triggers for M’s allergic reactions and so we needed to find a basic food that was likely to be safe. Despite being told that we could comfortably start with a “portion” of rice, I chose instead to take things slow and M had just 1 tablespoon of plain, boiled rice on that first night. He enjoyed his mouthful and, looking forward to having more the next day, carried on somewhat oblivious to the anxious monitoring I was trying desperately to hide. The evening passed without event and we all went to bed happily – well, the rest of the family went to bed happily, I went battling the usual Mummy-paranoia that accompanies anything and everything that involves my children and their welfare.

Courtesy of smartwebsite.ru

Since that day, around 4 weeks ago now, we have been able to gradually increase the amounts of rice M eats each day and have branched out to include rice milk, rice cakes and gluten-free rice cereal – a veritable feast! This week I even managed a rice batter, using rice flour and sparkling water and made some deep-fried rice balls to tantalise his taste buds. M has shown an occasional atopic reaction to the rice as it triggered a rash across his shoulders and back, although the hives have now calmed down as his body has become accustomed to eating once again. Despite this rash, we have seen no reaction in his bowels and are able to count rice as a “safe” food for him. Even better, we have also been able to add chicken to the mix and this week have been trialling pineapple, though the jury is still out as to whether this may be causing a mild behavioural reaction akin to the one we’ve seen him experience before to soya. Assuming all is well with the pineapple, we have plans to trial pork, cucumber and carrot over the coming weeks and may even have time to squeeze in another carbohydrate before we head back to GOSH in April.

7 years to diagnosis

Searching for an answer