Category Archives: EGID

“So much time…

...and so little to do. Wait a minute. Strike that. Reverse it…”

                                                          – Willy Wonka, “Charlie and the Chocolate Factory” (Roald Dahl)

This past week has been busy and there’s still lots more to do, not least of which is a proper blog post.  However, the reality that is choir rehearsals,..SATS revision,..sunflower growing,..Anglo-Saxon house building,..SATS revision,..CAMHS appointments,..food-trialling,..SATS revision and May Bank holiday trips to Legoland Windsor for “Star Wars Day” as well as time spent prepping for EGID awareness week with Powerpoint presentations to perfect and conversations with local media to be had, means that this week’s posts have gone by the wayside, so instead here’s a small photo round-up to give you a taster of all the fun we’re having:

“Elementa(l)ry, my dear Watson”

(with profuse apologies to all Holmes fans out there, but I just couldn’t resist!)

As we head into our 5th month of E028, the positive impact of the elemental diet on M is plain to see.  Family, friends and even casual acquaintances have commented on his improved health, behaviour, appearance and overall much happier demeanour.  We have seen glimpses of the happy-go-lucky, confident and outgoing child he can be when constant pain is not plaguing him and we have celebrated that success with him.  We’ve even embraced the somewhat daunting prospect of food trials despite the lack of useful advice we were originally given and have ploughed on regardless, surviving the highs and lows of this latest rollercoaster ride. Believe me, there have been plenty of both.

The highs have been encouraging; 

highsWe have successfully reintroduced rice, chicken and cucumber to his diet and he’s loving being able to eat something solid once again.  I’ve adapted, tweaked and sometimes created from scratch recipes to give him a range of meals that make meal-times more exciting than just plain boiled rice, grilled chicken and a few slices of cucumber 3 times a day.  We’ve even found a new favourite in rice noodles, something he would never eat when he was small and, thanks to the advice of 1 kind reader, I have even managed to lay my hands on a bag of the elusive rice pasta and he’s enjoying the variety to his diet.  The bonus of finding some amazing allergy-friendly restaurants earlier this month was a real boost and will make a big difference to us all.

M has stayed positive and has very much been involved in making the decisions about what foods he trials next.  We are working closely with our GOSH dietitian to choose our hit-list of foods in a balanced manner and I speak to her every 2 or 3 weeks to provide an update on our progress.  Even better, she is constantly contactable via e-mail, which has given me huge peace of mind as I know I can ask her any questions I might have and she will always come back to me by either phone or email, even if it’s just to say she’s looking into it and will let me know.  We’re once more on a small break, but are looking forward to attempting carrot, corn and apple over the coming few weeks.

And the lows have been exhausting.

exhaustionmanageI never realised just how exhausting the process of food challenges would be and that’s on all levels: physical, mental and emotional.  Each new food starts with the excitement and hope that it will be a safe food for M and managing expectations has become key.  It feels easy at the moment to be downhearted as we have had 4 fails – pineapple, pork, sweet potato and banana – and a question-mark over the 5th – salmon; but it’s critical we stay positive as there are an awful lot more foods for M to try, and every success brings with it many more options for meals.  Unfortunately, every fail leads to disappointment and discouragement and we have to pick ourselves up, brush ourselves off and look forward to the next one as best we can.

The need to be constantly alert to the risks of cross-contamination during food prep, as well as ever-vigilant about rogue additions to lists of ingredients and being constantly alert to any signs of a reaction in M, requires a stamina I didn’t know I had.  That is something I’m sometimes finding it hard to hang on to.  Whilst we are almost desperate to successfully introduce another ingredient to our meagre list, it’s become clear that we have to do it at a pace that suits M’s pernickety digestive system, and that seems to be a very slow rate indeed.

SHERLOCK_HOLMES_-_01-743978However, despite the exhaustion and the blood, sweat and tears shed in the name of finding another safe food, the future is looking bright and M’s better health gives us all a reason to keep going, even when it seems tough.  To have him in the best health we’ve known for 9 years means that our decision to go elemental really was…well…”elementary, my dear Watson.”

London: our whistle-stop tour

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

imperial-war-museum-aburtThis 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

rcIn 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

IMG_0746This 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

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

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

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.

Back to work for a rest

take_a_breakI’m sure I’m not the only working parent in the world who gets to the end of the latest school holiday with a sense of it being time to head back to work for a much-needed rest.  The last 2 weeks have been undeniably busy, with a mix of work, play, holiday clubs, hospital appointments and tourist attractions to more than occupy our time.

Surprisingly, the first hospital visit of the Easter holidays was with G, who tumbled from her scooter and ended up with a painful wrist that needed a x-ray.  Despite her best efforts to fracture her left wrist with 4 weeks to go to her SATS, G managed nothing more than a severe sprain, though she has also gained a ban from scooters, trampolines, trees and any form of gymnastics until those exams are done and dusted.  Fortunately G is right-handed, so even these desperate measures didn’t get her out of the revision homework set for her time off school.  We are extremely proud of the effort that she has made with her studies during the holidays as she did some work every day with relatively little fuss and it’s nice to know that the end is finally in sight!

2053064-alpha_flightLess surprisingly, our next 2 hospital visits were both with M.  The first was his scheduled tube change at our local hospital and it went just as smoothly as the last one.  Despite the continued problems we’ve experienced with the gastro team, the nursing team in the CIU (Clinical Investigations Unit) are amazing and have worked hard with us to find an approach to the tube change that makes allowances for M’s anxiety.  The play therapists are on hand straight away to provide a much-needed distraction from all that’s going on by entertaining M with a bubble-popping game on the i-pad or a lengthy discussion about the Canadian Marvel superhero team, Alpha Flight.  Our now-experienced team of Gill and Jo sort us a bed in a quiet area of the unit and encourage M to take some deep breaths of entonox before we even start to discuss the tube change itself.  This time the job was done in an amazing 20 minutes, which included M removing his old tube himself, me counting to 10 in an array of foreign languages and only a fraction of the negotiations we’ve had to endure from M in the past.

622d9490d50f3993393fa0084b4793e8We also spent a few days in London following M’s first outpatient check-up with his GOSH consultant since he had his NG-tube and started the elemental feed.  I’m delighted to announce that, at long last and after an anxious few weeks, M has not only regained his pre-admission weight, but has also managed to put another kilogram on.  Whilst we still haven’t progressed any further than his 3 safe foods, the move to elemental has done exactly what we needed it to and M is unquestionably the healthiest he has ever been in the last 9 years.  The next step is an important one: to find more foods that he can eat without compromising this new-found good health.  We are moving from a pure gastro clinic to a new one for those with “complex food needs”, which will mean he is seen regularly by both his consultant and our specialist dietitian, who will then work together, and with us, to plan the next steps on our new journey.  The future is most definitely bright!

A tri-umph of rice-themed goodies!

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!

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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!

Easter weekend

Last year, Easter weekend was all about…

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A slice or two of this

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  …several of these

moo free

….and quite a lot of this!

This year, it’s more about this…

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Happy Easter!

“Muuummm, what’s for tea tonight?”

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Oh how this resonates..

If your family is anything like mine, that question usually comes just as you’re struggling through the door: with house keys in one hand, car key gripped firmly between your teeth, handbag on one arm, cello on your back, mobile phone pressed to your ear as you attempt to talk to the dietitian/consultant/other healthcare provider, who’s asking if now is a good time to talk and you can’t say no as you’ve been trying to contact them urgently for at least the last 3 days and who knows when they might call again; plus the school bag(s)/shopping bag(s)/extraneous bag(s)* (*delete as appropriate) you’ve picked up along the way are weighing down your other side and threatening to upset the delicate balance you’ve perfected in your struggle to cover the 100 yards or less from your car to the house.  Meanwhile, your curious offspring are waltzing in behind you, or possibly squeezing past you, through the already impossibly small and too-narrow-to-negotiate-safely doorway, bearing no more than a half-empty water bottle and their coat, worn superhero style to leave their hands free to carry absolutely nothing else at all.  And just as you think you’ve achieved it and managed to get everything safely inside, they open their mouth and ask that unavoidably fraught dinner-question and the peace shatters and your world tumbles down around your ears.  Does any of that sound familiar or is it just my household?

For M at the moment, my answer is fairly standard, although he adds his own unique twist by asking if dinner will be “chicken with rice and cucumber” or perhaps “rice and chicken with a side of cucumber”?  For a while, when he was still 100% elemental, he would even ask if he could have “air-sticks” – “like bread sticks you see, but without the bread” – showing that the ability to laugh his way through this experience is his greatest strength in beating this disease.  I have become a self-confessed expert in cooking with 3 principle ingredients – rice, chicken and cucumber – and the bonus extras of herbs, rapeseed oil and sugar.  Rice has been broadened to include its derivatives and the inclusion of rice milk, rice cream and rice pops (as long as they’re gluten-free) has added to my ever-increasing repertoire of 3-ingredient recipes.

Rice-flour sugar cookies

Rice-flour sugar cookies

In the past few weeks, as well as my fall-back favourites of roast or grilled chicken with plain boiled rice, I have also perfected deep-fried savoury rice balls, chicken nuggets, chicken and cucumber curry, fried rice, chicken stir-fry, rice-flour sugar cookies and rice pudding.  My Mum has also made M a chicken breast stuffed with rice and cucumber, courtesy of the inspiration and some nifty hints suggested by our hairdresser and which was an instant hit with our young diner.  It’s surprising just how many different recipes you can create with just a few ingredients and there’s even a few more that I’m hoping to try out in the coming weeks.  What started out as a daunting challenge to entice M’s appetite and encourage him to once again eat whilst navigating the tricky world of identifying his food allergies, has become yet another success story in our household.

Letter-to-the-EditorSqareMy victory with such a limited range of ingredients has been all the sweeter given the recent UK news story of the letter sent to the Daily Telegraph newspaper by over 100 top chefs and restauranteurs condemning recent EU legislation requiring restaurants to provide information about which of the top 14 allergens the dishes on their menus contain.  It was never a requirement that they did not cook with these ingredients, but rather that they should be able to inform diners of what the food prepared contains, with the knowledge and pride in their ingredients that I would expect from any talented chef.  Whilst widely welcomed by those of us in the allergy-world as a step towards helping us make informed decisions about eating out, these chefs warned that such requirements would harm “…the spontaneity, creativity and innovation restaurants and others in the industry have enjoyed up until now.

Like so many others in my situation, I wrote a response on the Telegraph website, pointing out that this legislation will help me to protect my children and give them experiences that will ensure their continued health and enjoyment,  I do not deny that it’s up to me (and they as they grow older) to ask about allergens, but there’s no point asking these questions if the restaurants, waiting staff or chefs cannot provide the information needed and the lack of understanding about cross-contamination risks is sadly common across the food industry.

20140818_143459Our experience last summer in Disney proved that this type of requirement does not need to be restrictive as excellent allergen information was readily available and nearly everywhere we ate produced meals for G and M that rivalled those being served to any other customer there with a “normal” diet. The chefs were knowledgable, came to our table to discuss their allergy needs and made the effort to find out what my challenging duo would like to eat – excellent service all done with a smile.

The big challenge was always to cook M-friendly food and these days that task has become even more testing.  In my opinion, these rules will have little impact on spontaneity or ingenuity – try cooking or baking when you need to avoid wheat/gluten, egg, dairy, soya and potato to name but a few.  Ingenuity comes when you try to prepare a meal that makes your child feel that they’re not missing out and that’s something I feel I’ve proved is possible, even for an amateur cook like me.

Piece of cake

20150225_231442 sr_162935_largeThese photos are of the supplies I needed to create this year’s  birthday cake masterpiece for Master M as, after all, this had to be a birthday cake like no other I’ve ever baked before.  In the same way that I had discussed my plans for the food we would serve at their Cluedo party with M, we sat together to talk about the various options for his birthday cake.  I could bake a “normal” cake for him to give to his friends, I could use polystyrene dummy cakes to create an authentic-looking, but totally M-friendly cake or we could try something completely different.  A friend had suggested using small bottles of 7-up to create a tiered cake and then giving every party guest a bottle to take home, which I thought an inspired idea as it’s one of the few things M has been able to enjoy since his NG-tube was passed, but M disagreed.  He preferred the idea of the polystyrene “fake” cakes and we headed off to the shops over half-term to source the cakes, decide how many tiers he wanted and get all the art supplies I might need.

20150225_200407Every year I try to create birthday cakes that either echo the themes of the parties themselves, be that mini-golf, magic or minions; or that are innovative and something the children have never seen before, such as last year’s pinata cake for G.  This year’s Cluedo theme offered me a wealth of ideas and I just needed to decide how to put them into action. I settled on a black base layer and ever-grateful to avoid the nightmare of icing a free-from cake, attacked our 3 tiers with a sturdy brush and bottle of black paint.  “Cakes” fully covered, I liberally sprinkled some silver glitter over them all before the paint dried, positioned the silver 9 on the top and added an emerald green ribbon trim for that touch of old-fashioned glamour and to fit with M’s role as party host, “Captain Emerald”.  I stuck the tiers together using PVA glue and then inserted some wooden skewers, just to make sure there was no chance the cake would fall apart before the day itself.

20150225_210001Next came the fun part of adding the decorations.  I had previously printed out silhouettes to use for the characters and images for each of the murder weapons and had a number of them left-over after I had prepared the cards for the party itself. Choosing carefully, I glued the weapons to the bottom layer and a selection of characters to the middle layer, making sure I included the image of G’s character, “Countess Pearl”.  My final step was to stick Captain Emerald’s silhouette to a piece of black card that I had already covered generously with more silver glitter and added this, leaning against the top-tier of the cake, before leaving it all to dry.

20150227_132323M’s cake sorted, I moved on to the preparation of a cake for G.  Much as I had enjoyed exploring the “crafts” side of my personality, this was the moment I’d been waiting for since Christmas.  Not so much the baking of a cake, though I love decorating birthday cakes to wow my children, but more because I finally got to use the best Christmas present I had received and one that was completely unexpected.  I’ve been drooling over the KitchenAid food mixers for years, imagining one gracing my kitchen counters and last year started saving towards buying one of my own.  To my delight, and absolute surprise, my wonderful Mum invested in a Ice-blue model as my Christmas/birthday present and it’s been sitting in the kitchen, taunting me daily with its absolute beauty, whilst I’ve waited for a chance to take it for a test-run.  All I can say is thank goodness I needed to whip up 24 G-friendly cupcakes as well as the birthday cake itself as I flew through the first task and loved every moment spent doing it!

20150227_141709My birthday cake challenge was easier this year as although G has allergies of her own, I was able to use eggs, an ingredient I haven’t baked with in over 3 years.  I used a simple gluten- and dairy-free recipe and then split the mixture between 5 bowls.  Inspired by both the colourful characters in the Cluedo game and a recent episode of Great British Comic Relief Bake-Off, I added 5 different food colourings – 1 to each bowl – and then marbled the cake mix in the baking tins.  20150228_114150As I waited for the cakes to bake, I turned to my trusty laptop to search out some ideas for how to decorate G’s Cluedo cake and settled on recreating the board itself out of icing.  Working late into the early hours of Sunday morning to finish this final part of the party preparations and when I finally fell into my bed at around 3am, I was delighted with the end results.

The big reveal of my “showstopper” cakes was a huge success.  Both G and M were thrilled with their cakes and liked the fact that even though they were completely different, they both fit our Cluedo theme perfectly.  The cakes had pride of place at the centre of our Dessert buffet table and were a real talking point for children and parents alike.  A job well done, though I’m not rushing to make 2 cakes for the same occasion again any time soon – my nerves just can’t take it!

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A Whodunnit birthday!

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.

20150301_143337As 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.

20150210_225626The 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.

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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.  20150301_155523The 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…

..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

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

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.