Tag Archives: food allergies

Sweet – and Savoury – Crumble

I love cooking, I really do, though it has to be admitted that sometimes I get more than a little fed up of constantly re-hashing the same old recipes week in, week out, to feed my terrible two. We are not a family that eats a great deal of puddings, but I do like to occasionally whip up a special dessert for after Sunday lunch if inspiration should hit. Last week I decided to use up the blackberries that had been lurking in the bottom drawer of the freezer for a while and add them to that old family favourite, apple crumble.

I have to confess that I am so adept at making crumble these days that I no longer weigh and measure out the ingredients, but rather use my experienced eye to achieve the mixture I’m after. However, with a view to wanting to add this recipe to my blog, I took my time and painstakingly recorded each and every element of my recipe to share. A delicious apple and blackberry crumble served with lashings of custard, made using Bird’s Traditional Custard powder, which is amazingly gluten-, dairy-, egg- and soya-free when mixed with old faithful rice milk, was the perfect way to finish off our Sunday lunch.

During the week that followed, I took my standard crumble recipe and adapted it to create a delicious, if unusual savoury dish. Here and now I admit that I cooked this for just Mike and me, knowing full well that my chances of getting G and M to eat it were somewhat slim, BUT there is no reason why this couldn’t be served to food-allergy-suffering children as it was, for the most part, M-friendly.

This time I cooked mushrooms, onion, garlic, courgette, sweetcorn and tomatoes together and added a hefty sprinkle of madeira, thyme and creme fraiche* to make the base. I then mixed in some rice before covering the whole with my crumble mix. For this savoury dish, I made the crumble without any sugar and instead included chopped chestnuts and some more thyme to taste. As this meal didn’t need to be M-friendly, I also stirred in cubes of blue cheese, though this could easily be replaced with the wonderful Violife vegan cheese that I have recently discovered for M. I baked the final dish for around 25 minutes and served hot.

I was delighted with the end result, which could easily be adapted to include other veg or meats depending on your own tastes. My recipe was based on whatever was hiding in the corners of the salad bins at the bottom of the fridge and is a meal that I know I could convert for M and G’s tastes too. An easy dinner and one perfect for a cold winter’s night!

Courtesy of telegraph.co.uk

* you could easily replace the creme fraiche with coconut cream or any other grain-based cream if you need it to be dairy-free.

National Spaghetti Day

3 Replies

The accidental discovery through Twitter that January 4th is National Spaghetti Day was a welcome answer to that age-old dilemma in our household of what precisely to cook for dinner. I’ve never been that impressed with gluten-free spaghetti as it has inevitably turned into lumps of glutinous mess, rather than the delicate strands it starts out as, no matter how I’ve cooked it. This time I decided to try some of the Glutafin spaghetti we were given at the Allergy and Free-from Show back at the start of last summer to see if I could get a better result.

The biggest decision I had to make was what sauce to concoct for G and M. They’re not too keen on a traditional bolognese and I wasn’t sure I could adapt a carbonara recipe without a little work beforehand. There’s nothing I love more than just throwing together ingredients from the fridge and, as M had expressed a desire for prawns the night before, I decided to base my pasta sauce on those and the little smoked salmon I had left after Christmas.

Apologies for the poor quality of the photo, but the pasta was delicious!

Using my fail-safe base of onion and garlic, I added the prawns, some smoked salmon trimmings, corn, peas and some chopped chestnuts. One of the challenges that we’ve given G for 2014 is to choose a new vegetable or fruit to add to each meal. The variety of fruit and vegetables that she eats is relatively limited and we have struggled to successfully increase the amount she will eat. At every meal, I am now offering her a choice of 2 she dislikes or hasn’t tried before. She can choose which one she would prefer and then add it to the meal in some way or another. For this meal, G had the choice of adding tomato to the main course or orange to her pudding and quickly decided on the tomato. I added a chopped tomato to the pasta sauce and finished it with some coconut cream.

I cooked the spaghetti in strict adherence to the instructions on the pack – boiling water, a tablespoon of olive oil and stirring the pasta only once before allowing to cook for 10 minutes. I was pleasantly surprised by the results and the spaghetti was an immediate hit with both G and M.

This was a quick and easy pasta recipe that made use of some of the leftovers from Christmas and a selection of vegetables from the fridge and freezer, whilst being completely M-friendly. You could obviously add whatever vegetables you wanted – I added courgettes and mushrooms to the sauce for Mike and me to enjoy – and can always use cream or creme fraiche instead of the coconut cream if you don’t need to be dairy- and soya-free. Best of all, it got that all important extra vegetable into G with the minimum of fuss!

To whom it may concern

16 Replies

Dear Local Hospital

28 years ago, your specialists saved my life.

My family and I owe our gratitude to those skilled doctors who were on duty the night of my 9th birthday, when I was admitted perilously ill and closer to not making it through the night than my parents could have imagined. Their wonderful care brought me back from the brink as my Type 1 diabetes was diagnosed and they supported me for the next 11 years of my life. It is not ridiculous for me to say that I owe my life to you and had every confidence that when Mike and I started a family of our own, we could entrust the health of our children to your care.

2 and a half years ago, your consultants told me that there was nothing wrong with my son, other than a minor complaint he would grow out of in time. Your doctors left me questioning my instincts and made me feel that they viewed me as a neurotic mother. They even queried why we, as loving parents, would consider putting our child through an experience as horrendous as an endoscopy, when it was obviously not needed. Mike and I began to doubt our judgement and, at breaking point and in desperation, we took our child and walked away from your care.

Our wonderfully sympathetic GP listened and sent us to one of the top Children’s Hospitals in the world for a second opinion. At our very first appointment there, we were told that he was a very ill little boy, but that they could help. They have diagnosed a chronic condition that he will probably never outgrow, a condition that has changed his life. For 2 years, we have juggled our family’s lives to make the regular and necessary trips to London to search for answers and to work out how to return our son to better health.

Six months ago, our son was struggling with new symptoms and GOSH requested a test to rule out any infections in his system. A simple test that, due to its nature, needed to be carried out locally and our GP readily agreed and sent off the sample with the appropriate paperwork. Within days, you replied that you wouldn’t do the test due to funding and suggested that if GOSH wanted the test done, then we should travel to London for them to carry it out. It was with a sinking heart that I accepted this decision and vowed silently that I would never willingly bother your hospital again.

Five months ago, he needed urgent abdominal x-rays and I reluctantly agreed to attempt a referral to your hospital for these. To my surprise, you agreed and once again I was reminded of the competence and compassion of the dedicated people who work there as they cheerfully showed my inquisitive child the x-rays of his poorly tummy. A tiny seed of hope began to sprout – maybe we could develop a relationship with you that would put my son first.

Two months ago, we were prepared to give you another go. GOSH wanted him to be admitted to you for the extensive bowel prep he needed prior to his scopes, due to the chronic constipation that had been identified over the summer. I was willing to see if things had improved, now that we had the “big guns” at GOSH involved. You let us down again. I don’t know fully the conversation that happened between your gastro team and the team at GOSH, but you refused to admit him and instead we had to face the upheaval of a week away from home to make sure he got the care he needed. That tiny seed of hope had obviously been trampled on thorny ground.

A couple of weeks ago, I noted anxiously that he was showing some signs of chronic constipation once again and our best efforts were woefully ineffective. GOSH advised that he needed to be admitted before Christmas for another bout of heavy duty bowel preparation to clear his system and once again suggested we tried you. Once again, our stalwart GP sent an urgent referral across to you and once again, you refused to take him. This time you insisted that you wouldn’t even consider a referral sanctioned by GOSH unless he was examined by a GP first, so we did as asked, got him examined and re-sent the referral.

We are now nearly 3 weeks on and the best you can offer is an initial assessment in February 2014. If this is your response to an urgent referral, I dread to think how long a child might need to wait for a so-called non-urgent one. Our GP has been fantastic and can’t do enough to support us. Their admin staff are searching high and low for any possible alternatives for us and making phone-calls that are definitely above and beyond their call of duty.

You have been fantastically dreadful and are refusing to budge on your decision.

I understand that you are busy. I understand that your beds are full of other sick children. I understand that you feel you don’t know my child any more and are reluctant to offer him treatment based on the recommendation of other health professionals.

BUT, you are failing a 7 year old child.

A child who is in constant pain that waxes and wanes to an increasing level every day. A child who wakes in the night crying because of the pain in his tummy. A child who needs medical intervention now, so that the problems don’t multiply and escalate in the lead up to Christmas. A child who is at emotional breaking point and desperately needs some help. A child who doesn’t understand why I can’t make him better and why you won’t help.

GOSH is helping as best they can and is working alongside our GP to prescribe a series of stronger laxatives for us to use safely at home. The problem is that we won’t know for sure whether they’ve worked or not and will just have to keep trying during the festive season. What’s more we’re back at GOSH in the New Year, the best part of 6 weeks before you’ll see him and I’m left wondering what to do for best.

We’ve been told that we need a local paediatrician to be involved in his care. Someone we can liaise with when things get this bad and who can help us get the local care that our child needs. I’m caught between a rock and a hard place. I don’t trust that you will give him that help and support and yet we can’t be dependent on continual telephone consultations, especially when we know local input would be less of a strain on us all. Frustratingly, I don’t have options. I know just how excellent you can be and yet the last few years have been one disappointment after another. The best alternative to you is in Wales and we can’t get there because of NHS funding policies. We’re caught in a political trap, where everything comes down to money, or the lack of it, and postcodes; and everyone loses sight of the most important thing:

That at the centre of it all there’s a 7 year old boy who just needs someone to help him feel better.

A Duo of Birthday cakes

2 Replies

As this year was a milestone birthday for G – her first in double figures – I wanted to bake her a cake she’d love and remember for a long time. Some time ago, I had seen this post by fellow allergy-friendly blogger, The Free From Fairy, and had duly filed away the information in the depths of my memory ready for the right occasion. I loved the idea of creating a cake for G that would be as unique as she is and would have that often elusive wow factor too.

The morning before her party dawned and having bought every colour of icing under the sun and ensuring I had enough supplies of all the key ingredients, I started to bake. In an attempt to make the cake extra-special, I decided to sandwich together layers of chocolate cake as well as plain sponge and used the tried and tested recipes I had developed earlier in the year. The chocolate cake was perfect, but I wasn’t happy with the plain sponge layers as they were too soft in the centre to allow me to successfully cut and stack the cake as I needed. I desperately searched for an alternative recipe and quickly found one that I tweaked according to the new principles of allergy-friendly baking that I have learnt this year. This second Victoria sponge worked brilliantly well and has now been added to my allergy-friendly repertoire.

With cakes baked, layers trimmed and stacked and my icing ready, I attempted to construct G’s rainbow pinata cake. I filled the hollow with a selection of G- and M-friendly sweets before struggling to cover the structure with icing, ready for the final decoration. I have to be honest and say that I wasn’t totally happy with the end result. I found it hard to create the stability needed using an “everything-free” sponge cake. With hindsight, I wish I had assembled the cake layers whole, rather than trying to create the arch of the rainbow as I think the outcome would have been even better. All that being said, G and her friends loved the cake and were thrilled to discover the pinata-effect of the sweets hidden away in the middle of each slice.

Of course, me being me, I wasn’t satisfied with just one cake to celebrate such an important occasion and once the party was over and done with, I set to finding the perfect creation for the big day itself. My inspiration for this second cake came from the amazing book, “Cupcakes, cookies & pie, oh my!“, which had been part of my recent leaving present from my job. G and M have spent hours drooling over the wondrous creations featured between those pages and I determined to create a cupcake piece of art just for G. I now have several great cake recipes to choose from, but stuck to our new favourites of Chocolate and Victoria sponges, though I ambitiously attempted to marble these together for the cupcakes.

The challenge this time round was that I needed to bake the cakes, ice and finish the decorations all in one day. Usually I bake the day before and then spend the evening before the party finalising my ambitious decorating plans, but with G’s birthday falling on a Friday, I had to do it all whilst the children were at school. Cupcakes and 8-inch cake baked, I started to prepare the icing, which needed carefully combining to ensure I had the final effect I wanted. Everything ready, I put all the component parts together and perused the final masterpiece. G had fallen in love with the cupcake peacock in the recipe book and I have to say, it has quickly become one of my favourite bakes too. Needless to say, the birthday girl was delighted and it tasted pretty good too!

Perfecting Christmas stuffing

2 Replies

With Christmas now less than a mere 3 weeks away – and counting – our preparations are in full swing. Christmas lists have been created; letters to Father Christmas written; Christmas cards written and very nearly sent; presents bought, wrapped and squirreled away until the tree is up; and my attention has now turned to the small matter of the food.

Courtesy of mirror.co.uk

A couple of weeks ago, I was given the job of cooking a Sunday roast for my Aunt whilst she was staying with Mum. As I prepared the chicken and veg, I felt a sudden desire for stuffing to accompany the meal. I have fond memories of delicious home-made stuffing on Sunday lunch-times as a child and realised, with a pang, that G and M would have no such recollection due to their food allergies. As a family, stuffing disappeared from our table two and a half years ago when M first started on his MEWS-diet. It has made the occasional reappearance at Christmas for us adults, but never in a M-friendly format.

Inspired by the pleasing aroma of chicken seasoned with sage that was drifting from the oven, I decided then and there to find a recipe for stuffing that I could tweak to meet G and M’s food requirements. I sourced a vegan recipe for Sage and Onion stuffing and set about pulling the necessary ingredients from my Mum’s cupboards to start the mixing process.

M helped create the perfect breadcrumb

Despite my fears that this would turn out to be an unmitigated disaster, the final outcome was delicious. Sadly, I was unable to convince G to even try a tiny morsel, but M set to with gusto. He enjoyed the flavours, though he complained it contained too much onion for his tastebuds. My final recipe can be found here and I am hoping to add recipes for other varieties for Christmas as I try them at home. It was a great result for a Sunday morning’s work and I’m looking forward to tweaking more recipes to accompany the Christmas turkey. The only question now is which one to adapt first – Chestnut, Sausagemeat, Cranberry or maybe all 3?

Unfortunately, I forgot to photo the final product and we ate the lot, so you’ll have to be satisfied with a photo of the pre-cooked version!

A Pizza Express birthday

6 Replies

The first day of December heralds the start of the busy season for most, but an especially hectic time in our household. As well as the much-awaited day itself with all the associated celebrations at school, work, choir and church, we also have to fit in a 10^th birthday and a wedding anniversary. This weekend we got the ball rolling in fine fashion with an early birthday celebration for G.

Whilst G is most definitely a December baby, this year other commitments near her birthday led to my decision to throw her party early and sneak it in at the end of November instead. The first discussion was about the format her party was going to take. G was keen to combine cooking or baking with a sleep-over. I was less keen. The prospect of organising a group of near 10 year-olds (and two 7 year-old boys) to prepare, cook and possibly decorate a selection of M-friendly foods lacked appeal. Add in M’s inability to settle and sleep at the moment and I could see that it was more likely that full-scale battle would break out, rather than the joyous birthday celebrations G had in mind.

Thanks to some wise words from Canadian friend F, I found the perfect solution – a pizza-making party at Pizza Express. Now I appreciate that throwing a pizza party for a child with wheat- and dairy-intolerances and her multiple food-allergy suffering younger brother sounds somewhat off the wall, but thanks to the gluten-free menu introduced by Pizza Express earlier this year, we knew it was a viable option. We discussed our requirements with our local restaurant and were reassured that both children could participate fully and work around their dietary restrictions.

The date was duly booked, invites sent, travel arrangements made and finally the day dawned. Following our prompt arrival at the restaurant, each child was given an apron and hat to don before their starters of garlic dough balls and a side salad were served. Thanks to the information provided by Pizza Express, I was fully equipped for all eventualities and the chef was able to lightly toast 4 slices of M-friendly bread, which was served with garlic butter that I had prepared at home.

Next the task of making the pizzas themselves. G, M and their friends were given a ball of pizza dough each and were then instructed in the art of rolling, pressing out and filling the pizza pans. The children had varying success with their pizza bases, but eventually, after a couple of false starts, everyone had a base to be proud of. They were then given a selection of toppings to add before their pizzas were baked in the ovens. G and M were able to take full part in this, preparing pizzas for Mike and me to enjoy.

Stretching and fitting the dough to the pan

Adding the GF tomato sauce to the base

Once these pizzas were ready to be cooked, G and M were then given the opportunity to make their own lunch. Our party host was fantastic and explained just how Pizza Express make sure that their GF options are kept safe from the risk of cross-contamination in their kitchens. The GF pizza bases are pre-made and kept in separate storage as is the GF tomato sauce for the base and they use different pizza pans to cook the GF pizzas, which are easily distinguished from the normal ones. I had brought our own supplies of grated goats’ cheese for G and chunks of Violife vegan cheese for M, which is both dairy- and soya-free.

G’s with goats’ cheese and ham and M’s with black olives and Violife cheese

We finished the meal with a small portion of ice-cream with various toppings they could add at their discretion. Once again I had been able to bring with me a tub of Booja-booja chocolate ice-cream for G and M to enjoy and was thrilled to discover that the Pizza Express toffee sauce was safe for them too as the party host had made the effort to check the detailed allergy listing for all their products and could reassure me that it was safe.

A game of “Pin the moustache on Paulo” entertained them whilst the pizzas were cooking

All the children had a wonderful time and we were hugely impressed by the attention to detail that PIzza Express makes to ensure that their allergy-friendly options remain safe, even down to serving G and M’s pizza on separate platters to once again ensure no cross-contamination occurred. It was a real treat to be able to offer a “normal” birthday experience to G and for them both to enjoy the birthday celebrations with their friends.

Our charity needs YOU!

End of an Era

8 Replies

For once this blog post isn’t about either G or M, but rather about me. Yes, I know, a break from the norm, but there is a me outside of being Mummy and this week has been significant in that part of my life and I unashamedly want to share it.

Yesterday signified the end of an era. After 3 and a half years of working as the accountant for a small business, I said my goodbyes, cleared my desk and am off to pastures new. I have loved almost every minute spent there, but the time has come to move on and Monday morning will see me stepping through the doors of a local and small accountancy practice and starting a new adventure as part of my career path.

The decision to make this change has been a difficult process and is partly influenced by the journey we are currently on with M and his health. My experience has led me to contemplate just how lucky we have been with my employers, who have been unfailingly supportive of the numerous doctors appointments, trips to London, days off to be at home with a sick child and the resulting emotional strains as I’ve juggled home, health and work on a daily basis. I know that there are many parents out there who are not as lucky as I have been and who have to fight to show their commitment to a job, whilst struggling to cope with the drama of a chronically ill child.

There has never be any question or doubt about my commitment to the role and, under these circumstances, I’m sure there are many who are wondering why I would leave such an understanding organisation and venture into the unknown. The answer is simple. I have been fantastically lucky to find a new employer who has firsthand experience of having a child at GOSH and understands that there are times when I’m just going to have to drop everything and leave. Add into the equation the new proximity to home and school – I now have a 5-minute commute to the office in the morning, rather than the 25-minutes battle against the traffic or on the train – and a slightly shorter working week, which will give me the time to be at home to support both G and M as they need me right now, the decision really should have been an easy one.

It’s been more of this………….and not so much of this.

However, it was with a heavy heart that I left my offices yesterday. I have made some wonderful friends over the past 3 years and, for the first time ever, am leaving a job because it’s the right thing to do for our family and not because I am no longer happy there. Their unwavering support and love as we set off on the steps that led us to GOSH, a diagnosis and an on-going battle to return M to good health has been invaluable and I will miss the cheerful banter and the numerous cups of tea that get me through each day. So, for any of the “Donut Gang” who are out there and reading this, a big Thank you for the past 3 years and make sure you stay in touch!

Courtesy of dailybreadcafe.ca

Welcome to the House of Fun!

1 Reply

It may seem an unlikely description of M’s week-long stay at GOSH, but we did end up having a week that was filled with fun and not just fear. I had dreaded the tedium of being confined to the ward and had managed to pull together some games and treats to see us both through. What I hadn’t anticipated were the events and activities that would be “on tap” at GOSH itself.

Courtesy of magicfree,net

Sadly M didn’t manage to get to the first of these opportunities as we were battling the interminable wait to get him admitted onto the ward on Monday morning and the rest of the week were barely able to leave his bed or the ward. However, the week we were there was celebrating “50 years of National Play in Hospital”. It recognised the hard work regularly put in by fully trained play workers, who go into the hospital setting and entertain the children who have been admitted. The launch on the Monday included face-painting, magic shows and other entertainers to give that day’s visitors an escape from the often frightening reality of being in hospital. You can read more about this special week here.

Courtesy of scouts.org.uk

Tuesday’s adventure started with a visit at 6.45pm from the leaders of the GOSH Scouts and Guides group. They had avoided disappointment by checking with the ward nurses whether there were any children that would be able to go to the weekly Scout meeting, either on their own or accompanied by their parent. They appeared at the curtains to M’s cubicle and invited him along for an hour of creativity and socialising. He refused point-blank to allow me to go with him and merrily trotted off with another child from the ward – disconnected from his drip and in a state of excitement to be escaping.

Just after 8pm he re-appeared, clutching a treasure box, leaf bracelet, sheets of word-searches, puzzles and colouring, and his new most treasured possession – his first Scouts badge. M was filled with stories of the 10 other children he’d been with, what they’d been up to and, most importantly for him, the fact that several of the others had also had NG-tubes and the news that one little girl was even “drinking her milk through it, Mummy!” Scouts is a new experience for M, but the opportunity to not stand out from the crowd because of his tube and his allergies was one he couldn’t have missed and he would have loved to have stayed another week in hospital just to go to the next meeting!

Treats number 3 and 4 both arrived on Wednesday. The first was the surprise arrival of a parcel from M’s godmother, Auntie L. She had packed a “Bored box” with an array of treats to satisfy any small boy – Top Trumps cards, a Lego Star Wars set, a magic set, 3 packs of Angry birds trading cards, a pack of silly putty and other bits and pieces were hidden inside. M didn’t know where to start, but slowly and surely he made his way through the box, which kept him occupied not just for the rest of the week, but for days afterwards too. Along with the box, M also received several Get Well cards from friends and family, which brightened his day as he loves to receive post and often moans that nothing ever drops through the door at home for him.

The final surprise for the week, was a visit from Dr Mattie, a clown doctor from the Theodora Children’s Trust. The use of Giggle Doctors in Children’s hospitals has come under debate many times, including recently in an article published by The Guardian newspaper. Whilst it cannot be denied that some children and adults are frightened by clowns – indeed, one of M’s nurses commented that the Clown doctors gave her nightmares – they cheered M’s day. M wasn’t amused by their jokes and he wasn’t that interested in the “Spot the difference” he was given, but he waited anxiously to check that Dr Mattie would stop and chat and not miss him out of his rounds, and was fascinated by the unbreakable bubbles that clung to every surface and constantly checked to see just how long those bubbles would last. Perhaps that old adage is true and laughter really is the best medicine.

He might not be everyone’s cup of tea, but he certainly made M smile.

A week is a long time

1 Reply

As I watched my active 7 year-old today, I realised that not many people would believe that 2 weeks ago he was in hospital going through 3 days of intensive bowel preparation, an anaesthetic, a colonoscopy and an endoscopy. This child, who is currently refusing to give in to his tiredness and go to sleep, has been running around like a wild thing, laughing and having fun. This time 2 weeks ago, he was quiet, in pain and reluctantly resigned to his fate.

A week ago, much to the surprise of friends and colleagues, despite having spent a week in GOSH, M was back at school as if nothing had happened. He reluctantly agreed to my ruling of no PE for the week, but I couldn’t stop him running around the playground with his friends trying to catch up on his missed week of fun. A week ago, we pulled him off the trampoline at home with a suggestion that bouncing around was perhaps not the most sensible thing after having investigative procedures on his GI tract – he has bounced back to full health, almost literally!

That Thursday was a long day for us all. Mike had travelled to London on the Wednesday to spend time with M and help distract him from all that was planned. As well as the extensive bowel prep, M had had a cannula put into his left hand on Wednesday afternoon and had once again impressed the nurses with his stoicism as he watched them put the needle in without shedding a tear. He laughed and joked with them as they did it and even discussed whether they would need to put a second one in his other hand.

Mike arrived back on Kingfisher ward around 8am Thursday, bringing with him a much-needed croissant and vanilla latte for my breakfast. M had been without food for 24 hours by this point and, whilst he accepted that I had to eat for my health, he didn’t want to see Mike eating food. We sat with a nervous M and played endless rounds of Top Trumps as we waited for the nurses to come and prepare him for the scopes. He eventually changed into a hospital gown and disappeared off to the Wii for one more game of Lego Batman with Mike to relieve the tension.

Finally, the nurse and consultant arrived to meet us and summon M to the investigation suite. We took Cat in with him, but M was determined to prove how brave he was and asked me to take Cat back to his bed with me. We kissed him good luck, watched as the anaesthetist put the “magic milk” into his cannula, heard him count unsuccessfully to 10 and then beat a hasty retreat back to his cubicle to wait for it all to be over.

Poor Cat, all ready for surgery, but relegated to wait instead

Nearly an hour and a half later, and this time prepared to be waiting beyond the 45 minutes the hospital staff had said, the consultant appeared to talk through what he had seen during the procedure. The best news was that the scopes looked much better than last time and whilst there were still obvious areas of inflammation, the damage had been reduced and consequently M bled considerably less than previously. There are signs of some problems in his upper GI tract, but we need to wait for the biopsies to come back from the laboratory to see what they show. Everything supports the EGID diagnosis and shows that the medicine and restricted diet are making a significant difference to his insides and we should continue to persevere with them.

Even better, M’s reaction to the anaesthetic was significantly better than the previous times and whilst there were some unexpected concerns with low blood pressure and pulse rate – he really is my son as I suffer the same problems – the hallucinogenic reaction was relatively mild and within 3 hours of coming round from the sedation, he was back playing the Wii with Mike., something we had never even imagined would be possible.

So now we’re on to our next wait until the results are returned and every week between now and our follow-up appointment is going to be an extremely long time.

7 years to diagnosis

Searching for an answer