Tag Archives: food allergies

And that’s a wrap

cookery

I don’t know about you, but I frequently find that mealtimes can get a bit repetitive, especially when we’ve had to cut yet another staple from M’s diet.  Much as I love to cook and bake, sometimes I really, really hate having to decide what to prepare for dinner.  Add into the mix the need for packed lunches on a daily basis, which are generally formed of the same key ingredients due to a restricted diet and I end up pulling my hair out in desperation.  M’s recent longing for a prawn mayonnaise sandwich meant that I had to seek inspiration and work out whether it was possible to create something even vaguely similar or not.

prawnsThe easy bit, believe it or not, was the prawn mayonnaise.  Using a squirt of some Really Not Dairy original mayonnaise, a dash of Heinz tomato ketchup and a generous serving of prawns, I was able to whip up a reasonable prawn cocktail. I diced a chunk of cucumber, grated some carrot and threw a handful of sweetcorn in to add a couple of portions of vegetables to the filling too.  This mayonnaise is egg-, dairy- and soya-free and tastes more like salad cream than traditional mayonnaise, but it does the job and has been a great find for M.

Next came the more challenging aspect, the bread.  G is able to enjoy Genius bread, which is the best gluten- and wheat-free bread we’ve tried, but unfortunately it contains both egg white and potato starch which are now excluded from M’s diet. 20140317_171113 M’s sandwiches are usually made from Sakata rice crackers as his bread is really only edible when toasted, but these are small and don’t lend themselves to being a critical part of a prawn mayonnaise sandwich!  Mike and I both enjoy eating wraps, either for lunch or filled and baked for a Mexican inspired dinner and at last year’s Allergy and Free From show we stumbled across the amazing Bfree gluten-free wraps.  These taste delicious and both children enjoyed them whilst we had some.  Unfortunately, they are incredibly difficult to source in the UK, though most larger Asda stores do stock them now and I headed to our nearest shop with my fingers tightly crossed to see if they were available.

Part of my regular shopping routine, even when buying foods that I’ve bought before, is to scan quickly through the ingredients list for anything that isn’t M-friendly.  Recipes do change, even on tried and tested products, so it’s worth those few extra minutes to avoid days or even weeks of pain because of a missed offending food.  To my dismay, I noted that the wraps contained potato starch, which is now a forbidden food for M and I thought my chances of buying a good alternative to satisfy M’s cravings were over.  I went home and even attempted to make some M-friendly wraps, but the rice flour didn’t lend itself to the recipe and the kids understandably turned their noses up at the finished product that was presented to them.

20140317_170320It was a couple of weeks later when I was in our local Waitrose, that I spied a new-to-me package on their free-from shelves, Newburn Bakehouse gluten-free wraps.  I picked it up to cast my eye over the ingredients, fully expecting to find either egg or potato flour or both lurking there, but to my delight, this new product contained nothing that wasn’t M-friendly and I quickly snapped up the remaining pack to take home and try.

I prepared M’s lunch using one of the Newburn Bakehouse wraps and a generous spoonful of my home-made prawn mayonnaise and called him to the table.  He was overwhelmed to see his much longed-for sandwich waiting for him and made short work of devouring it all.  He relished every bite and, what’s more, requested a second wrap, something that doesn’t happen all that often in our household.  The wraps looked and tasted good and, with 3 to a pack, there was enough left for his school lunchbox on Monday.  Both M and I award them with a much-deserved 10 out of 10 – a great product, delicious to eat and suitable for a MEWS-diet, what more could a Mum ask for?

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Another birthday celebration

Guess what?

Today marks the first birthday of this blog.

First birthday

It seems unbelievable that I have spent 12 months writing about our experiences over the last 8 years and sharing our struggles, our successes and more than a few recipes to boot.  We’ve had our highs and our lows, but with the support of our family, our friends, medical professionals and other bloggers we know we can keep on going.  When I started the blog I wanted to be able to share the story of M’s life and our fight to get a diagnosis for him and the best care and support we could.  My aim was to raise awareness of this rare and little known condition and I always said that if I managed to make a difference to just one other person who was living our experiences, then I would be more than happy.  Amazingly in the last couple of months, I’ve received kind messages that have told me that I have achieved that goal.

A few statistics to share about the last year:

  • Date of first post:                          March 13th 2013
  • Number of blog posts written:    95
  • Number of “followers”:                297
  • Most popular post:                       To whom it may concern
  • Total views of that post:               220
  • Highest number of hits:               165 in one day
  • Number of recipes shared:          27
  • Most popular recipe:                    The best chocolate cake ever
  • Total number of comments:        218
  • Total number of views:                 7,867

As ever, we’ve no idea what lies ahead for M, for G or for us as a family, but the one thing I do know is that I will continue to share our journey with you and every development as it happens.

Our birthday boy

Over the past few days, we’ve been celebrating young Master M’s 8th birthday.  It’s hard to believe that it’s been that long since he first crashed into our world and whilst the time hasn’t been easy, it certainly has flown past fast.  The last 8 years have been filled with a lot of laughs and smiles and it’s exciting to see just how our “little bean” is growing up.  Obviously, we’ve had a lot of health worries along the way – this blog wouldn’t exist without them – but those haven’t overshadowed the joy and good times of having M as part of our family.

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M has become a little boy with a big personality.  Like most other boys of his age, he loves everything Lego, Star Wars and Angry Birds and is a keen member of our local under-8s football team, where he can be found most Saturdays running around the pitch and even occasionally kicking the football.  He loves discovering new things and although he’s not the most academic of children, his passion for new facts, knowledge of the world and probing questions have been flummoxing his teachers for years.  M does struggle due to his dyslexia and dyspraxia, but the strides he has made since we got the diagnosis last year are amazing and he never lets them stop him being an active participant in class. He enjoys school now more than I ever thought possible and is keen to get there each morning to spend the day with his friends.

DSC02717He adores his big sister and even though he spends most of his spare time planning new ways to wind her up, he will be the first to leap to her defense or comfort her when she’s upset.  He will go off to search for a scrap of her “rag” when she’s in tears, though he will also hide it from her when he’s in one of “those” moods.  They love nothing more than playing together in the garden and enjoyed most of the weekend’s sun by washing my car with M’s brand new super-soaker.

P1010012Perhaps more unusual is his flair for all things theatrical.  M has never been backwards in coming forwards and I have photos of him stepping up to perform karaoke age 4.  He loves to perform and is always looking for the next opportunity to do so.  His current favourite musical is “Singing in the Rain”, though he’d probably also mention “Lion King”, “Matilda” and “Oliver!” in no particular order.  M has a dedicated dressing-up wardrobe and has fancy dress to meet every occasion.  No matter what character you’re looking for: be it “Odlaw” from Where’s Wally, “Bert” the chimney sweep from “Mary Poppins” or the “Ringmaster” from “Ninja Meerkats”; I can guarantee that M will have already been there and worn that!

When it comes to coping with his EGID and his diet, M is a trooper.  He takes his medicines with the minimum of fuss and accepts the food restraints with relative good humour.  He’s not perfect by any stretch of the imagination, far from it, and really struggles at times with frustration and anger that this is his lot in life.  Yet he nearly always bounces back and keeps going with a positive attitude.  The latest challenge of no potatoes has been one of the hardest M has had to face and he has really found it difficult to accept that he might have to avoid them longer term; but even he has had to agree that things have improved since we whipped them out of mealtimes and is now hoping that our next GOSH appointment will bring a food trial instead.

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To celebrate in true style, I once again attempted to bake the double and created 2 cakes for M to enjoy – one for our family dinner and one for him to share with his friends at his party. The first he chose from my cupcake decorating book and the second was inspired by G and M’s current passion for all things “Despicable Me”.  It took two long and extremely late nights, but I achieved my goal, was pleased with the results and, more importantly, so was the birthday boy himself.

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Pancake party

Last Tuesday was Shrove Tuesday and time for a pancake party.  In previous years I have used a recipe that makes Canadian style pancakes, which taste delicious with bacon and maple syrup and which I frequently adapt to make sweetcorn fritters for tea.  This year I fancied having a crack at the more traditional British pancakes, which are much thinner than their North American cousins and not dissimilar to the French crepe. pancakes

Now, I knew this wasn’t going to be an easy make, after all the 3 key ingredients of your average pancake are flour, milk and egg, all of which are a no-no when cooking for G and M. I fell back on an old and trusted Delia Smith recipe and simply replaced each item with a M-friendly alternative.  Instead of the listed ingredients, I used rice flour, rice milk and ground flaxseed meal.  My final recipe can be found here.  M was so excited at the prospect of pancakes for tea that he helped me mix the batter and the result was better than I expected. It actually looked a lot like “normal” pancake batter and, as we prepared it the night before, I popped it into the fridge ready for the following day.

Despite the pleas of my hungry pair for a pancake breakfast, I played the role of mean Mummy and instead insisted that they waited for teatime to arrive.  We agreed on a dinner combining both savoury and sweet pancakes.  We started with plain pancakes topped with a little melted butter, bacon, a little cheese and some vegetables and by the time they had devoured those, both G and M were keen to see what I would make for pudding.

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I added some of Antony Worrall Thompson’s Chocolate and Hazelnut spread, which is amazingly safe for M to enjoy, as well as a dash of vanilla essence to the remains of my batter.  I cooked the chocolate pancakes, though I wish I had made them a little smaller as the batter took longer to cook and fell apart when serving.  M had his covered with pomegranate arils, whilst G had hers with banana slices.  Easy to do, quick to eat and a definite winner for a great end to a delicious meal!

Something nutty for the weekend

Having tried a variety of snacks over the last few weeks – Dorset apple cake, chocolate chip cookies, ginger cream biscuits and banana bread – I decided it was once again time to turn my hand to something new.  This time I felt inspired by the children’s love for all things peanut butter and decided to venture into the world of peanut butter cookies.  I’ve sampled these delicious treats when visiting family and friends in Canada, but have never thought to bake them at home.  We are extremely lucky that neither M or G suffers from a nut-allergy, so I was keen to perfect this recipe as another addition to my ever-expanding repetoire of M-friendly snacks.

"Perfect" cookies, courtesy of www.alaskafromscratch.com

“Perfect” cookies, courtesy of http://www.alaskafromscratch.com

The recipe I found was easy to follow, easy to adapt and most definitely easy to bake.  The first batch of cookies spread to an unbelievable size, so once those had been devoured – and trust me, they really didn’t last very long at all – I used the remainder of the dough to cook another batch.  This time I popped a spoonful of dough into each well of a muffin baking tray, which produced a more even and crispier version of the cookie.  M loved the second batch even more than the first as he prefers his cookies with a crunch.

You can find my adapted recipe here, but I have to confess that I’m still working on reducing the sugar content as they are extremely sweet and I think could be just as good with a little less sugar.  Enjoy the weekend!

My "not-so-perfect" ones

My “not-so-perfect” ones

School trip!

WOW!  Haven’t things changed since we were young?  Way back when, I remember the school trips from my Junior school years.  They always seemed to be to places of historical importance or museums and not necessarily to the places my friends and I would have chosen for a day off school.  As I got older, the trips involved a little more travel and even, very, very occasionally, a theatre trip, or suchlike, that required additional financial input from willing parents.  These days school trips appear to have changed dramatically or, at least, that appears to be the case this term for my pair.  They appear to be far more exciting than any school day out that I remember.

M’ school trip happened a couple of weeks ago and, as it fell on a day I didn’t have to work, I tagged along for the ride.  The day itself was grey, wet and miserable, but that didn’t seem to dampen the spirits of the 27 7- and 8-year olds going out for the trip.  We clambered aboard the bus and off we set, amongst much discussion of just how long it would take for us to reach our destination.  Fortunately, a mere 20 minutes later we arrived, disembarked and were ready for the next 2 hours.  Our location? Pizza Express!

Last year, Pizza Express teamed up with the Children’s Food Trust to encourage children to get cooking.  They offer free visits to schools, where the classes are taught about the provenance of the food they eat, learn basic health and safety in the kitchen and have the opportunity to make their own pizza to enjoy.  What was even better, from my point of view at least, is that Pizza Express offers an excellent experience for food-allergy sufferers, which meant that M was able to participate fully on the day itself.

They started with a tour of the kitchens and a quick step into the enormous fridges – if they dared.  We saw the pizza ovens, where we were told that a pizza takes no more than 4 minutes to cook, which certainly left us adults scratching our heads and wondering quite why it takes so much longer when you’re waiting at your table!  This was followed by a food-based quiz, where 1 of M’s classmates impressed me by being able to identify oregano just from a photo and the children were able to taste, if they wanted, some of the ingredients they would be using later.  Next, the pizza chef on site prepared from scratch one of the most popular pizzas, cooked it and offered a slice to everyone there.

Finally, as every child was now nearly at bursting point, they were sent to wash their hands thoroughly before starting to prepare their pizzas.  An impressive array of ingredients was set out on the tables, enough to satisfy even the most picky of eaters, without overwhelming them with choice.  Pizza bases were passed along the lines and the restaurant manager made certain that M’s gluten-free base was on its own tray to avoid the risk of any cross-contamination.  M was given his own spoon and first go at the tomato sauce, so I was confident that his pizza would remain “safe”.

Every Pizza Express restaurant has a reference folder which shows every ingredient used in their recipes and indicates what allergens each contains.  I was confident that the pepperoni provided was M-friendly, but it was fantastic to be able to check so easily and without fuss.  I had prepared some slices of our newly discovered Violife cheese too, which meant M could finally have a pizza with cheese, rather than without which has so often been the case.  M stood happily with his friends, laughing and chatting as they each designed their idea of the perfect pizza.

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Once the pizzas were made, including those of all the teaching staff and parent helpers present, they were popped into the massive ovens to bake.  As soon as they were ready, they were placed into individual takeaway boxes for transporting back to school and each box carefully labelled with each child’s name.  All the hard work done, it was back to the coach and to school, ready for a pizza lunch.

It was great morning out and once again my heartfelt thanks go to Pizza Express for ensuring it was an experience that M could share in too, despite the multiple food allergies.  Not only do they provide great ingredients and plenty of allergen information, but they are clearly conscious of the risks of cross-contamination for food-allergy sufferers and work hard to ensure those are minimised as much as possible.  I was impressed with the birthday party we had there for G and equally so that time and care was taken to make sure that this school trip was 100% successful too.  I have no idea what trip is planned next, but I suspect it will take a lot to beat this one!

Banana bread to rival the Godmother’s!

Courtesy of minionslovebananas.com

Courtesy of minionslovebananas.com

As part of our recent plan to given M a substantial bedtime snack, M and I sat down to discuss what sort of foods he could choose from before bed.  I originally proposed a bowl of cereal or a couple of slices of toast, but quickly learned that this caused M no end of confusion.  Sometimes M struggles with his understanding of the world, can take things a little too literally and is very much a creature of habit.  Unexpected changes to his routine have been known to throw him for a loop and cereal at bedtime proved to be one such thing.  M very much associates cereal with breakfast and just couldn’t grasp that it would be okay for him to have it again later as a snack.  No amount of patient explanation would persuade my obstinate lad to change his point of view and so I gave in to the inevitable, abandoned that suggestion and hunted around for some “acceptable-to-both-of-us” alternatives.

We agreed on a few staples from the fridge and the store cupboard including Wot no Dairy! yoghurts, Frank* bars and Nakd bars, but I wanted to add something new to the equation too.  Thinking hard, I remembered that M had been requesting banana bread for a while and I wondered if I could once again find and adapt a recipe to satisfy this craving.  Around 4 and a half years ago, one of M’s godmothers, L, looked after him for an afternoon whilst I was at a check-up at our local eye hospital.  I’m not sure she’ll even remember the occasion, but M certainly does, predominantly because that afternoon they baked banana bread together. This banana bread has gained a position in M’s memory as the best, most delicious banana bread in the whole wide world ever and nothing has ever compared, or even come close.  He talks about the amazing smell and delicious taste, whilst the rest of us have, I have to confess, pretty much forgotten all about it,

My challenge, therefore, was set.  To create a loaf of banana bread that not only met M’s current dietary requirements, but that also needed to equal the memory of L’s bake all those years ago and I was ready to give it a go.  I found a relatively simple recipe, adapted it to suit and set about whipping up my masterpiece.  The smell of baking banana bread tantalised both M and G, who were forced to wait patiently until bedtime to sample it.

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Our kitchen was silent as they took their first, and then subsequent bites and Mike and I waited nervously for the verdict.  G declared it instantly as the “best thing she’s eaten, ever” and was full of praise.  M was a little more discerning in his comments.  My banana bread was great, as the empty plates in front of my children attested to, BUT it comes a very close second, as L’s still tops the rankings in his opinion.  So L, if you’re reading this and have even the vaguest recollection of that now infamous banana bread and the recipe you used, please give me a clue, so that I too can bake the “Best banana bread in the world”.

Ginger creams

Since our appointment at GOSH at the beginning of January, I have had to flex my baking muscles in an attempt to create some tasty treats for M.  Some of our old favourites have had to be shelved due to the additional exclusion of potatoes and raisins from his diet and choices have  become limited.  I’ve chosen to work within the constraints of rice flour, despite how granular it can taste, as we are fortunate to receive this on prescription for M.  This means that every new recipe has to not only be delicious, but also moist enough to incorporate the rice flour and disguise its texture.  I can’t imagine that my baking and cooking adventures will continue at the current rate, but this week’s offering is a definite winner and one I’m delighted to be able to share.

Courtesy of thedailybalance.com

Courtesy of thedailybalance.com

One of my all-time favourite treats has to be Fox’s Ginger Crunch Creams, which combine a deliciously crunchy ginger biscuit with a cream filling that has a hint of ginger too.  I’m a big fan of ginger of any kind, always have been and, having been treated to one of those delicious biscuits recently, I decided it was about time I made a version M and G can eat.  I have never made ginger biscuits before, so wanted a recipe that was relatively simple to adapt for M.  I found. and rejected, a number of recipes that I felt had too many steps and ingredients to work in a M-friendly environment, before settling on this recipe by celebrity chef, Paul Hollywood, who is now perhaps best known for his role as a judge on the Great British Bake-off.

As this recipe for his Mum’s ginger biscuits contains just 5 ingredients, I felt up for the challenge and set about making my M-friendly adjustments.  The whole process was quick and easy, and I was very impressed with the results.  I decided to leave a handful of biscuits plain, but whipped up a delicious ginger “cream” filling to sandwich the remaining pairs together.  I used a simple home-made buttercream icing that I flavoured with some ground ginger and created my home-made ginger creams.  20140124_151454

Both G and M enjoyed the biscuits, although I may have added a little too much ginger to the filling for their taste, which was reflected in their scores of 7.5 out of 10.  I have taken their comments on board and will try to remember to reduce the amount of ginger I use the next time I bake these treats.  I am certain that it would be relatively easy to also adapt both the biscuit and cream filling recipes to mimic the others currently produced by Fox’s, or indeed any other flavour that might be enjoyed.  The rest of the family loved them and I can highly recommend them dunked in a nice cup of tea!

Time for elevenses – choc chip cookie anyone?

Another peaceful Sunday afternoon could only mean one thing – another chance to try my hand at a new recipe.  Since our last visit to GOSH, M’s diet has become even more restricted and I desperately needed a new treat to add to his lunch-box and hopefully bring a smile back to his face.  Whilst the children were outside enjoying some long-awaited sunshine and Mike was working on our bathroom renovation plans, I sat at the kitchen table, pouring over my vast array of cookbooks.  This may come as something of a surprise, but I only have one that is dedicated to allergy-friendly cooking, instead I prefer to take my inspiration from regular recipes, which are adapted to suit M’s food needs.

Courtesy of theguardian.com

Courtesy of theguardian.com

I had already looked through my store cupboard to see what interesting ingredients might be waiting for me to use them and stumbled across a pack of Moo-free dairy-, and soya-free chocolate drops.  For those who have yet to discover the delights of Moo-free chocolate, this amazing product has been a real revolution for our household.  Not only do they produce chocolate buttons, but themed chocolate bars for Christmas and even Easter eggs that are suitable for both dairy- and soya-allergy sufferers.  I added their Cranberry and Hazelnut chocolate to M’s Rainforest flapjacks recipe, which became an instant hit in our household last summer.

Chocolate drops could only mean one thing – chocolate chip cookies.  I had a quick hunt through the books and found a recipe that seemed to be easy enough to convert for a M-friendly batch.  It came from a fundraising cookbook called “Squeeze your Lemon”, which Father Christmas kindly left in my stocking a few years ago.  I hadn’t before attempted a recipe from here, so was excited to see just how well the cookies would turn out.

20140119_183736The recipe itself was easy to follow, though the end result was a little sweet for my tastes.  G and M sampled them warm from the oven and, after mere seconds of deliberation, awarded them – and me – a more than satisfactory 9 out of 10.  The only complaints were that they were too crumbly, which is probably due to the rice flour used, and that they were too puffy! M insists that they would have been near-perfect if only I had made them a little smaller and flatter.  Either way, the recipe worked well and a cookie has found its way into 2 small lunch-boxes every day this week.  A definite bake to add to my ever-increasing repertoire, which makes it a success in my book.

New year, New plan

The first week of 2014 and our first visit of the new year to London and GOSH for a consultation with M’s gastro team.  Mike and I had our list of queries drawn up and were determined not to leave without some answers.  Topping the list were our concerns as to why M has been struggling so much with chronic constipation since the beginning of last summer.  It seems that no sooner have we managed to get his system cleared out, than the problems start all over again and nobody seems able to explain why this is happening in such a relentless manner.  My meeting with the wonderful local Bowel and Bladder clinic had given us a proposed plan to follow and I was keen to see if GOSH would jump on board.

Courtesy of telegraph.co.uk

Courtesy of telegraph.co.uk

Another on-going worry has been the restricted diet and number of medicines that M is taking and is one that his consultant has shared, especially as he is still symptomatic, which is the worst of all worlds.  We work hard with M to keep him going and stick to the daily grind, but he shows more and more reluctance to do so and sometimes the battle is just a step too far for us all.  I was keen to know if there was any possibility that we could remove one or two of his 7 daily medicines as we had discussed at our last proper appointment back in May.

Despite his weight loss in October whilst admitted to GOSH, and a further loss during December, M has managed to gain some weight in the last 12 months and is still creeping along his centile line, which keeps the medics happy.  This visit’s registrar was pleased to see that he had gained in both height and weight, though he mentioned that he would be happier if M could gain a little more weight in the coming months; a difficult feat when your child eats little other than “thin air” as M himself describes it.  We discussed at length the experiences and the numerous phone-calls that I’ve made over the last 8 months.  He even agreed that the current situation is less than ideal and supported, in principle, our tentative query as to whether we could drop a medicine or 2.

Courtesy of newharmonywellness.com

Courtesy of newharmonywellness.com

BUT – and admit it, you could sense that was coming, couldn’t you? – we can’t lose a medicine just yet.  Due to M’s new symptoms, the constant bowel problems swinging between chronic constipation and incessant diarrhoea and the general ill-health he’s been dealing with since the summer, we instead have to introduce new medicines to see if we can get a handle on the situation.  We’ve now got 2 more to add to the daily regime:  Senokot, which is a stimulant laxative, to help resolve the constipation issue, and Lansoprazole, a PPI to deal with the reflux that we’ve only recently learned M has been living with.

The problem with new medicines is that we can’t stop any of the old ones until we see if there is any improvement in his condition.  If we see a change for the better, we need to be certain that it is the new medication that is helping, an issue that would quickly become muddied if we took out any old medicines alongside starting new ones.  So, for the next 3 months until our return visit to GOSH, M will be on 9 medicines daily and already he has proved himself to be a real little trooper in his approach to it all.  I don’t know that I would be so keen to take so much every day, especially when there are no obvious outward signs that anything is making everything better, but he remains positive and determined to beat this condition and not let it rule his life.

We do have one other thing to do over the next 8 weeks and this resulted from the follow-up conversation with M’s dietitian.  She felt that we needed to exclude a couple more foods from M’s diet to try and reduce his symptoms.  We agreed to tackle the 2 that he has complained about when suffering from reflux.  His description of them making his throat feel as if “…someone has a pin and is pricking my throat and running it down the length of it..” as he swallowed had sounded the alarm with me and the dietitian agreed.  potatoesSo, for the next 8 weeks we are now experimenting with life without potatoes and raisins as well as the already excluded gluten, wheat, dairy, soya, egg and raspberries.  Fortunately, M almost always prefers to eat sweet potatoes to the humble spud and so I’m hopeful that, for the most-part, this won’t prove to be too difficult a challenge for us.

The visit to GOSH wasn’t quite as we’d hoped.  We’d gone with the dreams of reducing his medicines down to 5 or 6 and came back with the reality of 9 daily medicines and an even more restricted diet.  It’s hard to remain positive in the light of such a change, but we continue to strive towards a symptom-free M and will do whatever it takes to get him to that position.