Tag Archives: food allergies

Limping towards the Finish line

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bucket listDo you remember that long, long list of things that I was facing at the beginning of March? With the month-end in sight, I am, quite literally, limping towards the finish line, just thankful that the long Easter weekend ahead means the opportunity for some much-needed lie-ins and down-time; but how did March go in then end?

World book day and required costume x 1 – M decided on what can only be described as something of a left-field choice for your average 9 year-old and dressed up as Ford Prefect from Douglas Adams’ well-loved trilogy of 5 books, “The Hitchhiker’s Guide to the Galaxy“. It was one of the easiest costumes he’s ever asked me to make and to our delight, he won a £5 book token for the best WBD costume in his class.'Oh yes we're very proud of him. He's in publishing you know!'

Parents evenings x 2 – Both evenings went extremely well and we are so proud of the strides both children have made during this school year. M has been working hard at beating the challenges of his dyslexia and dyspraxia and is developing some beautiful handwriting when he remembers to try. G has settled well into Year 7 and was described to me as a “conscientious, hard-working, empathetic and focused” member of her tutor group. I was delighted to hear that her confidence has grown throughout the year and that she is developing into a well-respected and natural leader amongst her peers too.

School book fairs x 2 – Attended and books bought.

M-friendly croissants – Recipe adapted, croissants baked and hugely enjoyed as part of the school’s French role-play activity. I achieved above and beyond what I thought was possible with so little notice.

Mothers Day – We enjoyed a quiet day together, although sadly my Mum was unwell and not able to come out for lunch with us. We ate at one of our favourite M-friendly restaurants and were once again impressed by the phenomenal memory of the restaurant manager and the care awarded to both children by all the staff. Well done Wagamama!

Riding lessons – G continues to ride every other weekend and her passion for this hobby is growing. Her latest lesson saw her not only trotting and cantering with confidence, but beginning some preparatory steps to get her ready for jumping – scary stuff but she’s loving every moment.

A 10th birthday and a class assembly – These happened on the same day and were both celebrated in style. It’s hard to believe that my little bean has reached the end of his first decade and I can’t begin to imagine what the next one will hold.IMG_1765

Birthday celebrations – M chose a reptile-themed birthday party and I braved holding a tarantula to help encourage G to beat her fears and do it herself. We combined the day into a double celebration and headed out to a local trampoline park in the afternoon with a couple of friends for a belated marking of G’s 12th birthday too.

Dentist and hair appointments – These both happened as planned and really there’s not much more to say.

GOSH appointment – Mike, M and I headed to London for our first appointment at GOSH since the disastrous admission last December. We weren’t quite sure what to expect, not least because the gastro department is currently in a state of great upheaval. M is doing well, even though we haven’t managed to introduce any more foods safely into his diet since last summer and continues to impress us all by drinking the 400mls of E028 necessary to supplement his limited repertoire of food. His weight has dropped on the centile charts and will need some careful monitoring over the next few months as we continue to search for some more safe foods for him. There is, at long last, a chance of some shared care between GOSH and our local gastro team, which would add some much-needed local level support for our family and the next step is really to wait and see when and if that happens.

School play – Thankfully M’s role as Poseidon meant that I could re-use his toga from Stagecoach last year, so that was one costume crisis off my hands. He was only able to take part in one performance as the matinée was on the same day as his GOSH appointment and unfortunately I wasn’t able to see his evening performance as it clashed with G’s parents evening. However, Mike and G went to watch and told me it was great fun and he did really well.

Performing Arts Exams x 2 – Taken by one very-tired G and one determined-to-do-well M. We won’t know just how well they’ve done until mid-April, but I’m told that they both worked hard and performed well on the day. Having watched their performances the week before, I can’t wait to see if all their efforts paid off and are reflected in their marks.index

Spa day – This was a late birthday celebration, a treat that Mike had sorted out for me and my dear friend, and M’s godmother, L. We had a lovely afternoon being pampered, drinking coffee and chatting without interruption by small people, before enjoying a delicious dinner and a few bubbles to mark the day.

Events linked to school topics – This term M’s topic has been India and part of the school experience was to share an Indian meal from a local restaurant. Thanks to previous experience from G’s time in Year 5, I had been anticipating this one for months and a few mini trials of herbs and spices meant that I’ve been able to create a curry-esque meal that’s suitable for M. A mix of cumin, coriander, ginger and rosemary combined with our new discovery of rice cream created the sauce for his staples of chicken and rice. It might not be an authentic dish, but he loves it and it’s meant that he has been able to join in a meal with the rest of his class.

Preparations for G’s sibling camp – I haven’t quite started on this one, but the weekend’s going to be busy as G goes off to camp on Monday. She’s been looking at the list of things she needs and chatting to a friend via e-mail as she prepares for a week filled with fun and activities away from the hustle and bustle of home. She also went to her first Young Carers meeting this week and seemed to settle in really well. There are some other girls the same age as G, including one from her school, who have just started too and she’s looking forward to an afternoon at a local trampoline park during the Easter holidays. Watch this space for more of an update once she’s back and has shared all the news with me!

Easter – Preparations are sorted, food trials are planned, eggs have been bought and I’m looking forward to a peaceful family weekend at home.

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Happy Easter!

 

Best food trial EVER – and just in time for Easter!

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I don’t know what it’s like in your house, but Easter is always one of those celebrations that creeps up and takes me by surprise. I suspect that the general busy-ness of the 6 weeks beforehand plays a big part in my seeming inability to effectively organise for it. Every year I say I’ll be sorted and every year I fail miserably. When you consider the steady pace of events through our household this year: from Shrove Tuesday’s pancakes to Valentines Day, my birthday swiftly followed by M’s 10th and Mothers Day thrown into the mix for good measure, there’s no wonder that having finally paused for a much-needed breath, I’ve once again almost let Easter pass us by,

In previous years both M and G have been able to enjoy dairy- and soya-free Easter eggs, 20150402_183827although last year was very different as by the time the day arrived, M was only eating rice, chicken and cucumber and our options were limited to plastic eggs and an accompaniment of non-edible treats. Thanks to some strategic conversations with M’s dietician and some canny planning on my part, Easter 2016 is promising to be a much more exciting time for him as we’ve timed to perfection his next food challenge: cocoa and dairy-free chocolate!

M is now counting down to when he can start this food trial and I’ve been frantically exploring the free from market as, believe it or not, there have been some exciting new ventures in the dairy- and soya-free chocolate world that we’ve yet to discover. Here I’ve decided to share some of the great options available for those of you looking for a fantastic dairy-free Easter chocolate treat and hope that you’re able to find the perfect one for you.

Please note: Due to M’s previously identified hypersensitivity, we are avoiding soya lecithin as well as dairy and soya, but not all of these products use an alternative, so I’ve listed any “may contains” listed by the manufacturer.

Plamil Foods – This is a brand that I’ve seen, but knew very little about. easter-eggs-xlThey are the oldest vegan company in the UK and as well as not using milk, their factory is also gluten- and nut-free. Impressively they were the first company in the world to make dairy-free milk chocolate in 1983 and the first organic chocolate in the UK. Their Easter products include a variety of Easter Bunny bars and bags of half chocolate eggs as well as the more traditional hollow eggs.


Moo Free Chocolate – We’ve been big fans of Moo-free chocolate for a long-time, not least because they were one of the first dairy-free brands that I discovered that used sunflower lecithin, making them really safe for M. As well as their ever available chocolate bars, they are selling hollow Easter eggs in 3 flavours: moo-free-3-eggs-diagonal-web-mediumOriginal, Bunnycomb and Orange.

  • Dairy-, gluten-, lactose-, casein- and wheat-free. Also vegetarian and vegan
  • Uses sunflower lecithin
  • *May contain traces of hazelnuts
  • Available from a number of stockists including Sainsburys, Waitrose and Holland & Barrett. For a full list, click here
  • Prices from £4.00 to £4.99
  • G’s mark out of 10: 10/10

 

D&D Chocolates – This is a new brand to the whole family and I was lucky enough to have a taste at the recent #FFFA16 judging days I attended. As their website shows, they have a whole range of really lovely Easter products from the delightfully named Chuckling bunnies, mini eggs and various felt bags and baskets crammed full of chocolate. choccbunniesHR-bigThey also sell carob products and have a similarly impressive range of those themed for Easter too.

  • Dairy-, nut- and gluten-free. Also vegan
  • Uses sunflower lecithin
  • *May contain traces of soya
  • Available on-line as well as Independent health stores
  • Prices from £2.50 to £29.99
  • G’s mark out of 10: 8.5/10


Cocoa Libre – These are a relative newcomer to the freefrom market, but impressively have been shortlisted at both the #FFFA15 and #FFFA16. When I first saw their products, I got very excited as they are made with Rice Milk, which is clearly labelled on their packaging, but sadly they also include soya lecithin at the moment.This means that they’re not currently suitable for M, though I’ve no doubt that G would love this box of 10 Easter chicks.UfubKWw9Rb4AWzEU3q0Ot-jlK0Y

  • Dairy-, gluten-, wheat- and nuts-free. Also vegan
  • Uses soya lecithin
  • Available on-line as well as a number of small independent stores around the country
  • Prices from £1.95 to £4.95
  • G’s marks out of 10: Unfortunately G didn’t manage to try this one before I published this blog, but the chocolate I tasted at the #FFFA16 earned a 9/10 from me

 

Booja Booja – If you eat dairy-free chocolate and want to be indulged, you need look no further! Booja Booja makes the most decadent and delicious chocolate, which is perhaps far more suitable for the adult taste than for children, though needless to say,
G and M both loved their champagne truffles a few years ago! They have a beautiful selection of Easter eggs in this years collection and I’d be hard pushed to know which to choose.

  • organic as well as dairy-, gluten- and soya-free
  • *May contain nutsboojabooja2
  • Available from stores including Waitrose, Holland & Barrett and Sainsburys. Other stockists can be found on-line here
  • Prices from £9.95
  • G’s marks out of 10: We didn’t try their Easter eggs, but their truffles deserve a richly indulgent 10/10

A Birthday* surprise (*cake recipe included!)

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11009339_10152614451586123_8225188594845865541_o20140912_225331Six months ago I tackled the challenge of a birthday cake for M, where the only ingredients he could eat safely didn’t lend themselves to whipping up a tasty sponge and he ended up with a 3-tier Cluedo-themed “fake” cake. Six months before that, I adapted a crazy cake recipe to create a M-friendly chocolate masterpiece for my Mum’s milestone birthday.

Somehow it seems fitting that we’ve come almost full circle in our cake journey and I’ve recently found myself facing the task of another birthday cake for Mum and, more than that,  one which could be eaten and enjoyed by us all. The apple and rice flour cupcakes I’ve been making have been a real winner with the children, but the ever-persistent problem of a granular taste to these bakes, no matter what I’ve tried, meant that I was desperate to find an alternative and better recipe to mark this special occasion. Despite frequent google searches, that recipe was proving to be irritatingly elusive and it was only when we finally achieved a fifth safe food for M that I struck birthday cake gold.logo-eureka-01

To be perfectly honest, it really all came as something of a surprise success as I had no great hopes of yet another search turning up a rice flour cake that would 1) accommodate M’s restricted diet and 2) taste delicious. Despite my doubts, I thought it worth a look with our new ingredient of pear added to the mix and came across this easy recipe for pear and rice flour cupcakes that were not only gluten- and dairy- as advertised, but also egg- and soya-free too. I decided to do a test run and made a quick batch whilst G and M were in school. By the time they arrived home, the house was filled with the tantalising smell of fresh baking and M’s nose instantly went into impressive action as he begged to know if he could taste-test the cakes I’d been preparing that afternoon. Three cupcakes quickly disappeared from the cooling rack and I was thrilled to discover that there was none of that unpleasant granular taste that I’ve come to associate with rice flour baking. With an instant hit on my hands, I now needed to decide whether to attempt a cupcake tower for my Mum or see if I could cook a more traditional cake using the same recipe.

Due to an abundance of apples in our household at the moment – the benefit of apple trees conveniently located at my Mum’s, my office and at a friend’s – I tweaked the recipe to include some apple and reduced down the original quantities of oil and syrup as the original cupcakes had been a little too sweet for my liking. I waited nervously as the cakes baked, fingers tightly crossed that the larger layers would turn out as well as the cupcakes had and I needn’t have worried. The cakes looked impressive and I now have yet another great recipe to add to my list. Having left them to cool in the fridge (no #GBBO-style “wafting” in my household!) I sandwiched them together with some home-made apple purée before turning my mind to the knotty subject of how to decorate it all.

appleswansNow, if I had seen at that point episode 7 of #GBBO, I might have taken my inspiration from Paul’s amazing apple swans and spent my afternoon carving the intricate decorations to top the cake, but fortunately, or maybe unfortunately – I suppose it depends on your point of view – that episode had yet to air and instead I found myself using my time much more wisely: I was back on google trying to work out if a dairy-free buttercream icing was at all possible. To my delight and complete surprise, I found a way to adapt a recipe and create my very own coconut oil icing, which would tick all the boxes when it came to M’s dietary requirements. Whilst he is unable to eat coconut milk or flesh, he is able to tolerate the oil and I was over-the-moon to have the chance to finally bake a cake that actually looked and tasted like “real” cake for him to try for the first time in nearly a year. I took a tentative and small first mouthful to check the taste before spreading it across my cake. It has, unsurprisingly, a strong coconut taste, but this complimented the apple and pear flavours of the cake and was beautifully easy to use.

The icing was easy to make and I’ve no doubt I’ll be making more the next time a M-friendly cake is required. To make my recipe, I used:

  • 250g solid coconut oil
  • 200g icing sugar
  • 2tsp vanilla extract
  • 3tbsp rice milk
  1. Put the “solid” coconut oil – it should not be liquid at room temperature – into a bowl and blend until smooth 20150912_185526
  2. Slowly add the icing sugar and vanilla, continuing to beat the mixture 20150912_185815
  3. Finally add the rice milk, 1 tbsp at a time until you reach the consistency required. You can add more or less rice milk depending on how spreadable you want the icing to be 20150912_190502
  4. At this point I added some food colouring, one drop at a time, until I got the colour I was after – I’m not too sure about the green icing I ended up with, it was Mike’s suggestion and I’m not convinced it was the right one!
  5. Use to decorate cakes or cupcakes. Whatever your opinion of the colour, the finished result looked spectacular and I’m pleased to say it tasted amazing too!20150912_204048

NB – you can add any other safe flavours or colourings instead of the vanilla

This recipe is an entry into the #Swearbyit challenge with Vita Coco. Find more great coconut oil recipes and tips on using coconut oil at http://www.swearbyit.com”

 

 

 

A Wild 10th birthday!

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This week I’m planning to take a break from any suggestion of a complicated bake – after 3 sets of birthday “cakes” last week and croissants the week before, I really think I deserve it. IMG_1731I have to confess to keeping it simple on the big day itself as M had huge ambitions for the day of his party and so a cake-stand full of rice krispie treats seemed to fit the bill. I did jazz them up a little by splitting the batch in two and adding chopped apple to one half and crystallised ginger to the other. The birthday boy seemed delighted with my choices and with that success firmly under my belt, I moved on to the next phase of my baking challenges for the week: the party cake!

M has been fascinated by the natural world for as long as I can remember, hence the arrival of Leo in our household just after Christmas. He loves watching wildlife programs on television, reading nature-themed books, be they novels or factual, and appears to absorb the facts he hears in a sponge-like fashion, ready to share at any given opportunity. So when Mike suggested a wildlife party for his birthday, M leapt at the chance and immediately asked if I could make a bearded dragon cake for it. I tentatively agreed, with my usual proviso that I couldn’t guarantee anything before the day itself and he would just have to accept it, no matter the end result. I researched and found a company who would bring a selection of reptiles and insects to our party location and would teach the children about each one as well as allowing them to touch and hold them if they wanted. It wasn’t my idea of a perfect birthday treat, but M was hugely enthusiastic and so I booked the party session, having somewhat madly decided to hold it at our house to make life a little easier.

12670399_10153297404071123_3934501200587725837_nParty booked and themed party favours ordered, next came the matter of the cake. For once I decided to learn from previous experiences and didn’t leave decorating the cake to the last moment as I usually do. The prospect of a 2am finish really didn’t appeal, especially if I was battling with creating the perfect bearded dragon cake topper and so planned to start a week earlier, with the hope of finishing at a much more reasonable time the night before. I found some images on-line and, with “Les Miserables” blaring in the background, carefully copied the individual body parts before attempting to put them together. Given Leo’s rather vivid orange skin tones, I chose to make a bright orange dragon and whilst it might not have been the most realistic coloured one, I was thrilled with my crafted copy. I carefully covered and stored it away from peeking eyes, determined that M would be left guessing until the last possible moment.

Fast forward a week and Saturday afternoon found me whipping up a batch of stone grey coconut oil icing to recreate a rock, having already baked a M-friendly pear and apple cake, which was now sitting on a bed of brown sugar “sand”. With icing, dragon and cake now all ready and waiting to be assembled, I turned to the matter of some un-birthday birthday cupcakes for G. As you may remember, for the second year in a row M was in hospital over G’s birthday and we were unable to celebrate the day with her. Last year we held a joint party for them both and had a lot of fun at their Cluedo-themed extravaganza, but I wanted to do something separate for G this year. Taking advantage of our tradition that each child has a friend at the other’s party, 12790894_10153315764351123_4961913402772457111_nwe decided to hold a small event on Sunday afternoon for G and invited her 2 friends to M’s party in the morning as well as 1 of his to hers in the afternoon. Given it was a very much belated birthday celebration, of course we needed more cake and I decided a batch of cupcakes would hit the mark and decorated them with some rather glamorous silver icing and snowflake patterns for my December baby.

10441207_10153315937021123_5876452706470659349_nSunday dawned with the most glorious weather and an anxious countdown to the party starting by M. The 8 boys and 3 girls spent their time racing around our back garden, bouncing on the trampoline and admiring the varied animals that arrived to entertain. M, of course, held all that he was allowed and G beat her fears to hold the tarantula, despite shaking hands and the occasional tear. The cakes were greatly received and M declared my bearded dragon the “best cake ever!”

IMG_1738 IMG_1765

“Little pockets of heaven”

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That was G’s description of the amazing Borough 22 doughnuts that I brought back for her from my stint as a judge at the Free From Food Awards 2016 at the beginning of February. I had been impressed with the quality of these delicious allergy-friendly treats when I’d tasted them during the Tea-time treats category of the awards and was delighted to find that my somewhat fussy 12 year-old was showing a similar enthusiasm as soon as the first bite entered her mouth. She’s not usually given to waxing lyrical about anything, so these words constituted high praise indeed and the only disappointment was the look on M’s face which he just couldn’t hide, even whilst masterfully trying to celebrate his sister’s excitement with her. It was at that point a tiny seed of inspiration started to sprout and I soon had a cunning plan up my sleeve which I was determined to pull off if at all possible.

My hope was based on the comprehensive ingredients list found on Borough 22’s website and these promising words “We use the following ingredients which, where possible, can be substituted if you have an intolerance to them or are vegan/ vegetarian/ lifestyle conscious…if there are any that don’t agree with you then please let us know. Because we bake to order in small batches we will try our very best to substitute it for something that you can have!” Hardly pausing for breath and most definitely with every part of my body tightly crossly, I penned a quick email to ask if there was any possibility of a doughnut recipe that would cater for M’s particular and restrictive food requirements, stressing that I completely understood that this might be a challenge too far. I included my review from the #FFFA16, told them just how thrilled G had been to taste their doughnuts and then sat back to nervously wait a response. The return email, when it came, led to a lengthy phone-call, a flurry of e-mails and the development of what is rapidly growing into a great new friendship.

IMG_3397Ryan Panchoo, owner of Borough 22, is a truly inspirational man, who had a vision and didn’t just make it a reality for himself and his family, but chose to share it with the greater food allergy community too. It all started with the observations of his food-allergic wife and children that restaurant desserts were usually fruit or sorbet and lacking in quality and imagination, and the dream to create one dessert for everyone; something that tasted great, was of a great quality and that initially was both gluten- and dairy-free. He started with chocolate brownies, created a recipe that received the thumbs-up from family and friends alike and could then quite easily have stopped there. However, in a move that I feel really reflects his determined nature, Ryan decided to experiment with doughnuts and despite never having baked one before in his life, researched and tweaked recipes until his multiple allergen-friendly and delicious treat was perfected.

Ryan tells me that his ambition was never to sell his brownies or doughnuts, instead he simply wanted to be able to enjoy safe sweet treats at home with his family; but his friends had a different idea and in October 2014, Borough 22 was launched. It really is in the tradition of the very best “rags-to-riches” fairy stories to learn that he has never invested millions in some snazzy marketing campaign, instead depending on personal recommendations and his use of social media to spread the word. 12694884_571032356387193_4099041063554217609_oHis colourful and eye-catching Instagram photographs led to a situation that he willingly admits was surreal, when he found himself sitting in a meeting with a buyer for Selfridges, discussing exactly what he needed to do to sell in their prestigious food hall and, even more impressively, how they could help him achieve it.

Nearly 18 months on, Borough 22 is a flourishing business, who sells its wares in several outlets in South East London (The Plumstead Pantry & Good Food Catford) as well as through mail-order via their website. The business with Selfridges is currently on hold as Ryan searches for a suitable manufacturing partner to help him meet demand as he still works full-time as a Project Manager for a property investment company. Once that trickiest of partnerships is settled, the plan is to return to Selfridges and hopefully develop the business even further. 12717848_563378083819287_7037755747881912271_nI’m delighted to be able to share that Borough 22 was also shortlisted in both the “Teatime!” and “Start ups and Small Producers” categories of the #FFFA16, although everyone, Ryan included, will have to wait until the awards ceremony in late April to find out just how well they did. To shortlist once is impressive, twice simply astonishing, but I’m honestly not surprised as this is a product we are more than happy to endorse and recommend to everyone, food allergies or not.

Even better news for the 7Y2D household’s youngest member at least, Ryan agreed to try his best to adapt his recipe and accommodate M’s complicated food allergies. I decided not to mention our plans to M or G until I knew whether it was a possibility or not and even on the day I took delivery, kept quiet until the doughnuts were safely in my hands. However, as those who know me will attest, my excitement on that Friday was impossible to hide and I spent the day counting down the hours until I could pick my pair up from their respective schools and share the news. I captured every precious moment of the “big reveal” not just for posterity’s sake, or for my blog, but most importantly to share with Ryan himself:

I’m not sure that you really need my words to tell you about M’s response as these photos pretty much capture it all. I will tell you that M was left speechless and in tears when he realised these doughnuts were for him. I will confess that as he squeezed me tight and desperately sought to compose himself, I had to swallow down the huge lump in my own throat and wipe away a few stray, but happy tears. I will gladly share M’s own endorsement that Ryan can “…succeed at whatever he bakes Mum, because these doughnuts are almost better than birthdays..!”

Ryan, you may be a full-time project manager by day, but in my little allergy-sufferer’s eyes, you’re a true superhero by night.

The Croissants Adventures: Part Deux

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One of my biggest challenges for last week was set by M’s teacher, when she let me know on the Tuesday that they would be engaging in a spot of French role-play and would be tasting hot chocolate, croissants and other traditional French breakfast foods during the lesson. She was anxious that M shouldn’t feel left out and asked whether there was any chance I could send in something “…M-friendly and close to a pastry…” for the activity. The thing is that there really isn’t anything readily available that is even vaguely similar to a French pastry that is based on M’s handful of safe foods and so I knew this was going to be a baking challenge I needed to tackle and quickly. break05My starting point was actually a conversation with M as there was no need to stress about how to create a French-inspired masterpiece for him, if he’d simply be satisfied with a rice krispie treat instead. We started on the matter of the hot chocolate and despite his desperate bids to start his cocoa trial weeks before Easter, rather than when planned, he quickly changed his tune – well who’d want to miss out on an Easter Egg if it’s up for offer?! – and settled on rice milk flavoured with banana nesquik for his drink. However, he was less open to be swayed on the matter of the croissants and I promised to at least investigate if there was anything I could do before the Friday deadline dawned. Fortunately, 2 years ago the school had hosted a MFL (Modern Foreign Languages) Day and whilst G’s needs were met by the purchase of some delicious Genius pain au chocolat, even then there was nothing I could buy that would suit M’s trickier requirements. I had researched and adapted a great vegan recipe for croissants and baked a batch that kept him happy, even if they were not quite up to my more exacting standards. I knew I had added that recipe to my blog and quickly had a skim-through the list of ingredients to see if a new and improved M-friendly version was even possible.

For once, luck seemed to be on M’s side and, after a quick internet search for possible alternatives to the yeast I’d needed before, I was able to tell my excited child that I was willing to at very least give it a go. With plenty of warnings that there were no guarantees regarding taste or texture, I tentatively started the long and drawn-out process of making the pastry dough. I swapped coconut oil for the Trex and a bicarbonate of soda and xanthum gum mix for the yeast. The dough was prepped on the Tuesday night and I popped it into the fridge for a couple of days until I needed it: that was a big mistake. IMG_0207[1]The coconut oil solidifies at cold temperatures and by the time I was ready to make and bake the croissants on Thursday evening, my pastry was now filled with marble-sized lumps of coconut oil that I just had to remove. Whether this made much of a difference to my final product, I really don’t know, but given that a lot of the flavour in a French pastry comes from the fat added to it, I don’t think I did myself any favours.

I rolled and folded, and folded and rolled for a good 25 minutes on Thursday evening, until my dough was smooth and no longer a sticky mess that couldn’t be worked and I carefully cut triangles and rolled each one into the croissant shape, complete with slight curve. With the excess dough, I formed 2 pastry cases and attempted a couple of apple turnovers as an unexpected treat. Once all my pastries were ready, IMG_0209[1]I popped them into the oven, set the timer and attempted to forget all about them until the bell rang. The turnovers ended up being a little overdone and I wasn’t entirely convinced by the croissants either, though both children devoured them eagerly and with far more gusto than I was expecting!

This morning I was asked by a friend if I was planning to make a third attempt and I didn’t know what exact answer to give. The time and patience needed to make this pastry was tough to fit in alongside the everyday hustle and bustle of our household, but I reaped huge rewards. M and G were delighted with this different treat and I know that with a little more tweaking and a lot more practice, I might end up with a M-friendly pastry that would open up a lot more possibilities for meals for him. Not just croissants or apple turnovers, but chicken pot pies spring to mind too. So my honest answer probably should be:

Just watch this space!

What makes them rare

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February 29th: a special day, an unusual day, a day so rare that it only comes round once every 4 years and, quite frankly, the perfect day to mark Rare Disease Day 2016. This is the opportunity to raise awareness of rare diseases and the impact they have on the people living with them, not just with the general public, but amongst medical professionals and policy-makers too. It initially launched as a European event in 2008 and is now marked in over 80 countries worldwide.

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What is meant by a rare disease? Definitions of “rare” do differ from country to country, but across Europe a disease is considered rare when fewer than 1 in 2,000 people is diagnosed with it. The threshold in the USA is defined as when fewer than 200,000 Americans are diagnosed with that illness at any given time.

How many rare diseases are there? There are over 6,000 rare diseases known to be in existence and 80% of these have been identified as having genetic origins. Astonishingly, approximately 5 new rare diseases are described in medical literature every week.

Who is affected? Rare diseases can affect everyone, they’re not fussy about who they pick on. Over 3.5million people in the UK are affected by a rare disease, which equates to 1 in every 17 UK nationals. Somewhere between 50% and 75% of rare diseases will affect children and scarily, 30% of rare disease patients will die before they reach their 5th birthday.

Why raise awareness? The symptoms of a rare disease are frequently multiple and varied and not only are they not exclusive to that illness, but neither are they all experienced by all patients, which makes diagnosis a long and drawn out process. All too often the diseases are misdiagnosed and beneficial treatment can be unavoidably delayed. A lack of scientific knowledge and consensus throughout the medical community can add to the complexity of reaching a diagnosis and adds significantly to the burdens placed on the patient and their family.

What does Rare Disease Day mean to us?

Imagine being told that your child has a chronic illness that neither you, nor most of the medical professionals you’ll end up meeting from that point on, can pronounce – or have even heard of until that moment. stats

Imagine finding out that that illness is rare: that around 1 in 10,000 people are diagnosed with the most common form, but that your child has one of the rarest forms and that there is little research into it.

Imagine learning that even the medical community struggles to reach a consensus about this rare disease and whether it really exists or is simply part of a much bigger picture – but nonetheless, having to live with the reality of this rare disease and its effects on 19686_830453950379123_8588932072036308849_nyour family’s life on a daily basis.

(For those who wonder if EGID is real, try living with anyone who is in the midst of an EGID flare up and, bigger picture or not, you’ll understand why we will continue to fight for research into this unquestionably chronic and life-impacting illness.)

Imagine the heartbreak of holding your sobbing child at 3am, with tears streaming down your own face, as you struggle to find some, any words to bring him a little comfort.

Imagine taking one food after another out of his diet in a hope to bring some relief from the chronic pain and poor bowel function, until you are left with the final realisation that perhaps you need to remove everything and feed him via a tube to see if that is the answer you’ve been seeking for the first 9 years of his life.

And then imagine starting to put foods back in, one at a time, only to discover that his body has allergic reactions to more than you ever thought possible.

Does this sound familiar to you?

This is the reality of the last 3 years of our life with a rare disease as the truth of EGID is that symptoms are complex, understanding is limited and medical research funding scarce. M’s diagnosis with EC makes him rare, so please help raise awareness today, not just about EGID, but of other rare diseases and those living with them too.

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Can I Eat There?

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Over the years, Mike and I have tried to nurture a growing passion for good food in both G and M, very much based on our own love of food, eating out and experiences of a variety of culinary delights from around the world. M has become a real foodie and has never been afraid to try something new, be it oysters at age 4 or E028 at age 9! Whether it’s because of the lengthy presence of T1D in my own life, or due to identifying food allergies in G from an early age, we have never been afraid to go into a restaurant and challenge their menu options to make sure there’s food there that we can all eat and enjoy. Not everyone is as confident in making these demands and I frequently see requests for ideas for safe restaurants in the many FB forums that cover the topic of food allergies. These anxious parents trust the experiences of others in the same shoes and appreciate the advice that is so freely and gladly given; but what do they do when there’s no-one else on-line to share their tips or with the knowledge at their fingertips? Up until recently, the answer was probably to wait it out, especially if they were too nervous to step out of their comfort zone and give somewhere a try, but thanks to a fellow allergy Mum, last March an amazing new website was launched to help the allergy world share their experiences and highlight restaurants that really can cater for food allergies.

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Can I Eat There? is the brain child of Nicky Granger, whose young son, Gabriel, lives with 9 severe food allergies. Nicky and her fantastic team, who have an impressive amount of allergy experience between them, have set up a website that gives “…people with food allergies the information they need to make sensible choices about where to eat. Like menus you can filter by allergy. Customer reviews from other people with food allergies. Forums for chatting and sharing experiences and advice. And the opportunity to put your questions and concerns to our expert partners…” – a completely new venture that is unlike anything else I have seen out there and that really answers a growing need.

The premise is simple: the initial search engine on the site allows you to enter your location and then apply any filters you wish from a choice of: allergy, cuisine, rating, dietary or allergy awards, to suit your individual needs. Once these have been selected, the results are brought up, showing all restaurants in your chosen area that meet your requirements. At the most basic level, the restaurants listed will provide information about the restaurant type, the food offered and which food allergies they feel they can cater to. Some will have provided the CIET? team with a more detailed menu as well as full contact details and their website.

What makes this website so fantastic in my opinion, is the ability for users to add their own reviews and experiences of the restaurants listed and give them a star rating for their attitude to catering for food allergies. These reviews are easily accessible under each restaurant’s listing and give the anxious diner an honest review of just how well the restaurant managed to meet someone else’s needs. This really is a unique resource for families living with food allergies and one that I hope will continue to go from strength to strength. The success of the website is, of course, dependent on not only spreading the word that it exists, but also encouraging people to take the time to add their thoughts and reviews about the restaurants they’ve visited, goldstarsespecially if they would recommend them to others or, indeed, warn other food allergy sufferers against going there. Needless to say, as soon as I first heard about CIET?, I contacted Nicky to find out how I could become involved with her new venture and am proud to be one of the allergy ambassadors and partners delighted to be working with CIET? as much as I can. It really is a 5-star website and I wish them every success for the future.

Day 2: An even more energetic M!

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This is one of my favourite images from 2015: our own version of last year’s Feeding Tube Awareness week meme that I adapted using photos of M. Those photos were taken over an 18-months period and by picture 4 you can clearly see the improved colour and fuller cheeks of M’s face now that he was finally getting proper nutrition. After nearly 6 months being fed via his NG-tube, he had gained weight, had improved bowel function and was once again the cheerful, happy-go-lucky child that we had known him to be as a somewhat mischievous toddler.

Over the last 5 years, M’s seemingly unrelenting energy has confounded those surrounding him because M has never given up; has never let his EGID slow him down, even in the darkest moments. He has long since learned the lesson of “grin and bear it” because, quite frankly, the alternatives for him were unthinkable. M is a do-er. yourimageHe loves to run around and be on the go and into everything all of the time. I mean it. M just doesn’t stop, ever. He’s always given 110% to whatever activity he’s doing, even if it meant trying to finish a swimming lesson white as a ghost and with a temperature of 39.5°, or running the magic mile on the first day back at school after a week off vomiting and barely able to move from his bed or the sofa. Whilst you might often find G curled up in a chair or on her bed reading a favourite book, the only time you’re likely to find M doing the same is at 11pm when he’s waiting for me to come to bed before settling down himself, and even then you’re just as likely to find him playing his cello, or perfecting his dance routine, or building with his Lego.

We even managed a trek across Tower Bridge on our travels

We thought we had seen it all, but 2015 showed us just how endless his energy supply could be when he was being fed a balanced, nutritious feed that provided all the calories, vitamins and nutrients his growing body needed. No longer struggling with the anxiety of limited bowel function or working through the relentless chronic pain, M found the energy to achieve so much with his pump pack and feeding tube in place. He walked miles around London on our Shaun the Sheep hunt with no complaint of aching legs; he tackled and beat the challenge of learning to ride his bike unaided; and he continued to participate in the weekly sessions of Stagecoach that he’s loved for years, no longer needing to take regular breaks during the 3 hours training. We’re now 6-weeks into life without a tube once again and none of us knows what the future will bring. His year with the tube might be all that M needs, or we might see the return of it at an as yet undetermined point, but I don’t regret that year, not when I can see the improvements to M’s health and life and energy levels that it brought. His tube was never a barrier to his activity, but rather the boost he needed.

Feeding Tube Awareness Week – Day 1: Choosing to raise awareness

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7beb7940ed39bc80ce6cb39710abb740If anyone was going to describe the last decade of my life, the one indisputable conclusion they’d end up reaching is that it’s been anything but boring. Thanks to a pair of children who have thrown more than their fair share of life challenges into the mix, we’ve weathered more storms than I ever believed possible and, for the most-part, we’ve come out the other side still smiling and relatively unscathed. We’ve survived a lot of challenges, met a whole host of amazing people and learned a great deal along the way; and if I had to pick just one lesson that constantly resonates, I’d have to say that we now know to never take things for granted as they can change at the drop of the proverbial hat. Two years ago I wrote about our limited experience with feeding tubes and then, less than a year later, I found myself blogging about my brand new super-tubie. Another year on and the NG-tube has gone for the time-being and the only thing I can say with absolute certainty is that I have no idea if or when it will make a reappearance in M’s life.

The lessons that the last 12 months have taught us all have been huge and I have come to love and hate that feeding tube in equal measure. For the first time in his life, the reality of M’s chronic illness and multiple food allergies was outwardly visible and finally people understood from a glance that there was more to him than initially met the eye. The constant presence of the NG-tube opened up more conversations and opportunities for me than ever before and I’ve been able to share experiences, offer support and educate the wider community about EGID. M and his froggie friendWe all felt the benefits of that visibility to start with and I no longer felt the underlying pressure to defend the true extent of M’s illness and food allergies whilst my outwardly healthy-looking youngster was intent on tearing around practically making a mockery of every problem and pain we said he was suffering.

Of course, the flip-side was that ever-present tube. The one that there was no escaping or avoiding, no matter the event or occasion. Christmas, birthdays, performances and holidays, the tube was M’s constant companion and he became increasingly aware and conscious of the curious glances that were thrown his way by adults and children alike. His wonderful classmates and our village took it in their stride and quickly became so accustomed to it that M was never subjected to a second glance, but the wider world could stare until he disappeared from view. As well as the tube, we had the problems of M’s face reacting to the unavoidable medical tape and it took us several attempts to find a tape that didn’t burn his cheeks. Even when we finally found the best solution for him, at times he was left with red, sore and sensitive skin that only time tube-free could heal.

Looking back, 2015 was a year unlike any other in our family’s life, but I don’t regret a single moment of it. From that difficult decision to place the NG-tube and start M on an elemental diet, we have seen tremendous growth and an improved health that exceeded all our expectations. Most of all, we now have an opportunity to help raise awareness from the standpoint of personal experience and a road well-travelled, something that, believe it or not, I wouldn’t change for the world.