Tag Archives: food allergies

Birthday Wishes

Turns out that October 15 is a popular day for birthdays. Old school friends, work colleagues and even M’s adored Godmother, but we’re celebrating a special day a lot closer to home. Cue Friday night celebratory meals, Saturday evening at the theatre and a Sunday afternoon spent baking a batch of M-friendly Chocolate mayonnaise cupcakes all to mark this occasion.

So, what more needs to be said other than Happy Birthday to our favourite husband and Dad!

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Back to Canada

Getting to Canada was not quite as straightforward as we had expected it to be. As I said in my last post, our decision to go had changed fairly last-minute and whilst I had managed to find a great deal for us to travel via Dublin, we had some unexpected last-minute stress when a work colleague mentioned that the rules had changed and Mike and the children might need Canadian passports to be able to enter the country. Fortunately, after a few extremely stressful hours as I anxiously trawled through the pages of the Canadian High Commission’ website, I discovered that we could apply for special authorisation to travel without the correct documents as there wasn’t enough time to process them before we left.

Bags packed, we arrived at our local airport and made our first pit stop in Dublin. Our layover wasn’t long enough to allow us to venture into the city itself, much to the disappointment of G in particular, so instead we explored the airport terminal and managed to find one of the airport restaurants that could make gluten-free bacon sandwiches for both children to help assuage their inevitable hunger. I had naturally packed more than enough food to satisfy their appetites during the flight, but was pleasantly surprised when the Aer Lingus meals arrived for lunch and had made a reasonable stab at providing the plain rice and chicken I had requested, despite the email I’d received telling us that they simply couldn’t accommodate M’s dietary needs at all.

We had left the UK in glorious sunshine and arrived in Toronto to hot weather, but pouring rain, which didn’t impress the children for their first visit in 5 years. However, M in particular was delighted with the huge Ford Explorer that was to be our vehicle for the duration of our 2 week stay and that went a long way to keep them cheerful despite the miserable weather. We headed north, on our way to Lake Huron and Mike’s parents’ house, stopping overnight in Orangeville for some much-needed sleep before we reached our final destination.

The next 4 days were spent with Mike’s parents in their beautiful town on the shore of Lake Huron and we enjoyed a whole host of activities, doing things we’d never had the chance to do before. Walks along the shore and the harbour; swims in one of the Great Lakes; a boat trip to the lighthouse on Chantry Island; stock car racing and time spent making precious memories with both their grandparents and some of their cousins. We did enough to keep us all entertained, but also enjoyed some great time just relaxing with family.

 

Bananas’ Best Bits

One of the nicest things about adding some new foods to M’s limited list, other than the obvious of…well, you know, the addition of new foods to a highly restricted diet…is that just 3 new ingredients have added a huge number of new recipes for him to enjoy. Each one has brought something different to the cookery table, but the best one in many ways, or so M would have you believe, is the mighty banana. I first started playing with recipes back in March for M’s birthday, when I adapted an old favourite to bake a banana bread birthday cake with reasonable success. M wasn’t impressed by what he felt was an overwhelming flavour of nutmeg, so the recipe has had a few more tweaks to reach what is, by M’s exacting standards, almost complete perfection. It’s no exaggeration to say that the introduction of a 3rd fruit has been a game-changer in our household and so I thought I’d share the best bits about bananas with you all:

Banana Bread – it’s never easy to find recipes that can be adapted, and adapted well, to suit M’s restricted diet and these days vegan recipes are almost always my automatic go-to starter for 10. I found a wonderful vegan banana bread recipe on the BBC Good Food website and it took just a few subtle tweaks to turn it into a tasty, gluten-free, M-friendly baked treat that has been a big teatime hit. The latest twist has been to add some dairy- and soya-free chocolate chips to the dough, which makes the cake taste even more indulgent and a welcome addition to his daily packed lunch for school.

Banana & Chocolate Chip cookies – so often my recipes are a response to an unexpected need and these cookies are no different. One of M’s English lessons recently revolved around a tale of children stealing cookies from the staff office and his tutor group were given the opportunity to re-enact the story during a lesson. M came home from school very upset that he hadn’t been chosen to be one of these wannabe thieves and felt excluded because he knew he wouldn’t be able to share eating the cookies once they had successfully been taken. Fortunately, a quick call to the Head of Year 7 and an even quicker Google search found this wonderful recipe, which again required just a few tweaks to make a batch of M-friendly cookies that could be smuggled out of the school office alongside the ones for the rest of his class.

Banana, Apple & Lime Smoothie – one of M’s most precious possessions at the moment is the Nutribullet and Smoothies recipe book that my Aunt has given him as a memory of my Uncle. M feels even closer to him as he peruses the different recipes, trying to work out which he can safely make and enjoy and smoothies have quickly become a staple of his everyday diet. It’s even given him a great vehicle to trial raspberries as a handful added to the fruit mix works a treat. Despite his regular reluctance to get up and get ready for school, M can frequently be found whipping up a smoothie as an alternative to a more normal breakfast and he happily drinks it as he and G walk to school each morning. For a child who has always struggled with what to eat first thing in the day, these smoothies have been a real success story and a welcome break from the stresses that have all too often been a constant part of our morning routine.

 

Reflections of an appointment

I started writing this blog post 12 months ago and had put it to one side then because I wasn’t sure that the time was right to share all that was going on with M’s care at that point, particularly when it came to expressing my hesitation about whether the decisions being made were the right ones or not. Today we find ourselves in an even more emotionally charged situation and are becoming increasingly vexed with the marked lack of progress made over the last year. I revisited this original blog post tonight and decided that it now feels right to express that turmoil and the frustration in dealing with a medical team that appear to have lost their impetus to engage with us and with M. Those words written in italics are about our current experience.

There’s been lots going on over the last 6 months as many of my blog posts about our mini adventures have shown, but the one area I haven’t yet shared is the journey we’ve been exploring with our local consultant as I briefly mentioned last November. The decision to move almost all of M’s care from GOSH to our local hospital has not been an easy one to make, but for many reasons we have concluded that it is possibly the best one for now. Having a complete MDT (Multi-Disciplinary Team) close at hand to discuss all the challenges of M’s health has been invaluable and experiencing first-hand their willingness to see him at the drop of a hat over a 6-week period, where we’ve had 2 “emergency” appointments and 1 planned one, has been a relief, especially when you consider the problems we’ve had with them in the past.

It sounds fantastic doesn’t it? An almost perfect solution to meeting the complex and on-going medical needs of M; and yet, I would be lying if I didn’t admit that we’ve had our ups and downs with some of their suggestions and have not yet found ourselves moving on and making progress from the starting point we had 12 months ago. The overall opinion held is that M’s ongoing problems are not really related to his EGID diagnosis or the numerous foods we have previously identified as being unsafe, but rather a physical problem that is massively affected by psychological influences that are still to be fully explored and identified. We don’t disagree that there absolutely has to be a psychological element to M’s health: how can any child live through the experiences of his first 12 years and not be impacted in that way? But it also feels as if they’re throwing the proverbial baby out with the bath water and ignoring all of M’s physical symptoms from birth to 5, a time when it was impossible for him to have developed any fears of new foods or associations that certain foods would cause certain health problems.

It’s been challenging for us to adjust our thinking and look to embrace their suggestions of how to move things forward for M. Experience is constantly nagging at the back of my consciousness, gently reminding me that so many times I have been proved to know my son far better than the doctors treating him; but Mike and I have both worked hard to be positive about their new ideas because ultimately we want what is best for M and what will improve his quality of life beyond his, and our, wildest expectations.

In August 2017, my thoughts stopped there. I wanted so desperately to believe that things were going to change, to improve for M and it was, I think, a conscious decision to not air my hesitations and doubts because I was afraid to unwittingly jinx the improvements we were hoping would come about. However, nearly a year on and things have not changed at all. I now have a child who has struggled his way through the first year of secondary school and has lost the spark that makes him him. M no longer sees a positive in being treated at our local hospital and just wants to return to the care of GOSH, which is the last place he can actively relate to seeing any major changes to his day-to-day living. He has gained a couple of extra foods, but we are only at 9 (chicken, rice, cucumber, apple, pear, parsnips, bacon, onion and banana) and not the 20 that his consultant expected when we met him at the start of June.

At that appointment, the entire MDT acknowledged that M is not the child they knew 12 months ago and commented on his lost enthusiasm for choosing new foods to trial. I have tried so hard to explain to them that I am certain that M is not thinking his body into failing those challenges, but none of us really knows that for sure. The truth is that there are some foods that cause an unquestionable reaction and with others it’s difficult to judge if they’re causing an issue, or if it’s simply a case that we’re not really giving his body time to rest and recover between each trial. I’ll be honest, we’ve decided to relax the rules a lot at key times because it’s becoming increasingly evident that M needs the emotional boost that occasionally being able to eat more “normally” gives him. However, every decision to eat something we wouldn’t usually allow brings with it a set of consequences that are difficult for us all and not just for M to process.

I don’t know where we’re heading or what the next few months hold for M. The one thing we’re all agreed on is that we can’t keep living the current status quo because every day like this destroys another small part of the confidence we have in his medical team and buries his spark even deeper.

Visiting Edinburgh in every weather

There’s been so much going on in the last few weeks and I have a lot to catch you up on, including some fantastic new recipes that have been a great addition to my kitchen, but I wanted to make sure I also took the time to tell you about the last few days of our Scottish adventures back in March. Having started in Liverpool before travelling on to Glasgow and Inverness, via Falkirk and Loch Ness, it was finally time to start our long journey home and we simply couldn’t miss out the Scottish capital city itself, Edinburgh.

Mike and I have some amazing memories of Edinburgh as it was our honeymoon destination back in 1999 and we were keen to retrace some of our steps and share some of the wonderful sights with the children for them to experience too. We had chosen to spend an extra night there and given the weather we had, it was a good thing we had made that decision. On our first full day, we caught the tram from our hotel into the city centre, before jumping on to the City Sightseeing tour bus and heading towards the castle. Edinburgh is an undoubtedly beautiful city, but we struggled to convince G and M of that as we tramped our way up Castle Rock in the cold, sleety rain and rapidly darkening grey skies.

Despite our warm winter coats, hats, gloves and scarves, M got progressively colder and more miserable as we made our way between the different exhibits you can find within the Castle grounds. One of M’s godmothers is married to a lovely military man and both children were keen to learn more about the various Scottish regiments in the regimental museum. First exhibit done, we acknowledged the need for a temporary break from the wintery weather and headed into the cafe, where we enjoyed hot drinks, some safe lunchtime food and were in place to hear the 1 o’clock gun salute.

Having warmed up enough to bring a smile back to M’s face, we convinced them to traipse around a few more exhibits before we headed back down to the bus, stopping on the way for some dry wool socks and a brand new woollen hat for M. We had originally planned to stop at the Scottish Parliament, but the weather had quite literally put a damper on our travels and instead we completed a full loop and a half, before getting off and heading to the Hard Rock Cafe for an early supper.

However, the next day was almost a complete opposite to the day before and much to our surprise, M’s yearning for a day at Edinburgh zoo was an absolute success, despite the lengthy queue to get in, as we enjoyed a beautiful, sunny and surprisingly warm spring day. G and M were particularly keen to see the pandas, but we also had great fun spotting the lions and tigers and watching the penguin parade. We didn’t perhaps do all that we had wanted whilst we were in Edinburgh, but the children enjoyed the time we had there, even the snow, and would love to go back for another visit and the chance to see a bit more when it’s not so cold.

#NEAW2018: A is for Awareness

May 24: A is for Awareness

Today is all about raising awareness for EGID. At home we’ve been working on putting together a presentation for the end of June, when G and M will be introducing Over The Wall at their performing arts’ school’s end of year fundraising concert. We are, as so many others around the world, huge fans of the 2017 smash hit and all round wonderful film “The Greatest Showman” and the song “This is Me” had a particular resonance for the whole family. M and I chose this track to be the backing track for their OTW Powerpoint presentation and I decided to adapt what I’d already made for this year’s NEAW to raise more awareness.

Eating Out with Allergies in…Glasgow

Whilst I wouldn’t recommend spending an hour or so wandering the streets of Glasgow looking for somewhere to buy the right kind of cereal with a stroppy 12 year-old and his big sister in tow, I have to be grateful that we stumbled a great little cafe which provided us with the allergy-friendly packed lunch we hadn’t actually realised we were looking for.

iCafe, Sauchiehall Street – As we trudged our way down the street, Mike spotted this unassuming cafe and suggested we stopped to take a look at the menu before we went on too much further. Our eagle-eyes spotted both the gluten-free bread option to accompany the soup and the vegan offerings, so it didn’t seem like too big a leap to hope that they might be willing to make us some gluten- and dairy-free sandwiches to take with us for our lunch later that day. We made a quick decision to allow M to have a “treat” and agreed that he could have a chicken and bacon gluten-free sandwich (no spread) as his lunch choice. He has long been hankering for some bread and we all agreed that this was a fantastic opportunity for him to do so. I was also impressed by the selection of allergy-friendly snacks they had on display and G was also thrilled to have a soya-milk hot chocolate to take away with her and enjoy as we headed towards the bus stop. These toasted sandwiches went down a storm whilst we were at the Riverside museum and I was delighted by this unexpected find.

Hard Rock Cafe Glasgow – This isn’t the first time we’ve successfully eaten at a Hard Rock Cafe, having tested the allergy-friendly mettle of those in both Lisbon and Athens over the last couple of years. I think that now is an opportune moment to confess that I am something of a die-hard Hard Rock fan and love nothing more than visiting the Hard Rock Cafes of the world, picking up a City Tee in each location to add to my collection. G and M have become mini fans too and every time we travel anywhere, once of M’s first questions is whether there’s a HRC for us to go to whilst we’re there. It was therefore inevitable that our dinner would be at the Glaswegian Hard Rock Cafe and G decided to try something a little bit different by ordering the GF pulled pork sandwich with chips for her main course. M agreed to compromise on what he really wanted and played it safer as he had already had the GF bread earlier in the day, finally opting for a plain GF burger accompanied by a chicken breast, bacon and cucumber sticks.

Despite the initial run-in we had with our waitress, who wasn’t prepared to accept my first answer that it was easier to tell her what M could eat, rather than list his allergies in full, we eventually convinced her to work with us and with the restaurant manager to place our order. Once they had grasped what we were trying to explain when it came to feeding M, things turned round quite quickly and I absolutely cannot criticise the care that was taken with the children’s meals for the rest of our dinner. Once again we enjoyed a superb meal at yet another restaurant from my all-time favourite chain and wouldn’t hesitate to recommend a visit there to anyone with allergies.

From Gormley to Glasgow via Gretna

With our brief stint in Liverpool having come to an end, we set off to more Northern climes, planning to cross the border at where else but the infamous Gretna. Before setting off from our Liverpool base, we nipped into the local M&S to pick up a selection from their incredible GF/DF range as well as some other bits and pieces for us to enjoy as a packed lunch whilst we were en route. There was just one more place for us to visit before our journey could properly begin as I insisted on a detour to Crosby Beach, home to Antony Gormleys incredible art installation, Another Place. Mike and I had visited it during our previous trip, on a grey, wet and fairly miserable December afternoon and the weather wasn’t really all that difference on our second visit this March. The children found the statues themselves quite disconcerting and M wasn’t keen to get too up close and personal with any of them after he’d examined the first one. Whilst Mike and G wandered towards the shoreline to see the furthest one that was still accessible on foot, M and I instead stood back on the boardwalk to see how many we could spot out in the depths of the River Mersey. It is an impressive sight and was a detour I was glad we had taken.

 

Unfortunately, the delays from both the shopping trip and our visit to the beach plus a late morning start meant that we hit traffic as we joined the M6 Northbound and we quickly found ourselves in the hell of bank holiday traffic and lengthy queues. Thankfully M slept his way through the worst of them and by the time he woke up, we had headed off-piste and were relying on my map-reading skills and the GPS on Mike’s phone to find short-cuts along A roads and through small towns to try to circumvent the M6 nightmare. We eventually found ourselves heading towards the Scottish border with a fast-approaching teatime and decided to stop in Gretna to have some food before continuing our journey to the next planned stop on our travels, Glasgow.

 

We spotted the ever allergy-friendly Pizza Express at the Gretna outlet village and instantly decided it was the easiest place to stop as we know they can cater well for both children. The one thing that made me chuckle when choosing my dinner was spotting the Irn-bru – often described as Scotland’s second national drink – available on the drinks menu. As I said to Mike, “You know you’re in Scotland when…!” After an enjoyable and much-needed meal, during which I had explained the historical relevance of Gretna Green for young English couples looking to elope, we set off once again to complete the 90 miles or so remaining to reach our final destination. We arrived at our hotel on the banks of the River Clyde in the dark and were just about able to make our weary way to our room before bedding down for the night. It seems that endless queues of traffic can really take it out of you!

Eating Out with Allergies in Liverpool

As I promised in my last blog post about our short visit to Liverpool, it’s time to reveal the wonderful places we found to eat safely whilst we were there. I’ve said it before, and no doubt will again, but whenever we travel on holiday, be it home or abroad, we always relax the restrictions on M’s diet a little to allow him to enjoy some more “normal” meals with the rest of the family. M has now reached an age where we allow him to make more of the decisions about what he will and won’t eat on any given day and he understands the direct link between that choice and any fallout he might experience in the hours or days that follow.

There were 2 restaurants that we found that were absolutely brilliant in accommodating our allergy needs and I wouldn’t hesitate to recommend either of them. M and G absolutely loved the meals that they had here and were desperate to find an opportunity to visit either one of them again, but most especially the first.

Ed’s Easy Diner – This is actually part of a national chain, but not one that we had ever heard of before, though as their website reveals, there are a number of locations across the length and breadth of the UK. There’s even one not too far from us, though I haven’t yet revealed that particular fact to M! G and M were thrilled to discover a lengthy gluten-free menu for them to pore over and whilst G was disappointed that she couldn’t select from their breakfast/brunch options, she quickly decided what her choice would be for our late lunch. We continue to encourage both children to order for themselves and to make their allergy needs known to the servers, only stepping in when it looks like the message might be misunderstood or they haven’t quite made themselves clear.

G settled on “Big Bubba’s Bacon ‘n’ Cheese” burger with gluten-free fries and without the cheese. M was desperate to have a gluten-free burger bun, so he asked for the “BBQ Chicken ‘n’ Bacon” burger – without any of the constituent ingredients apart from the grilled chicken breast, streaky bacon and the bread roll. He shared a handful of G’s gluten-free fries and enthusiastically savoured every single mouthful. Mike and I were a little disappointed that they had run out of hot dogs by the time we got to the diner for lunch, but instead shared a caesar salad, onion rings and sweet potato fries as well as a burger. All in all, this was a fantastic find and I wouldn’t hesitate to eat here again.

Marks: G – 8.5/10     M – 9/10

Chung Ku – G and M absolutely love Chinese food, so I was delighted to find this much-lauded Liverpudlian restaurant during my quick internet search. With a menu catering specifically for those with coeliac disease, there was much excitement with my discerning duo as they pondered their choices for dinner. They eventually settled on Jasmine rice, Aromatic crispy duck served with lettuce instead of pancakes, Salt and Pepper chicken fillet and, especially chosen by M, King Prawns in rice paper. Mike and I were still full after our late lunch at Ed’s Easy Diner, so we agreed to share a platter of dim sum, supplemented by a bowl of chicken and sweetcorn soup for me, with full knowledge that we’d be able to pick at any leftovers once the children had eaten their fill of their choices.

The food was absolutely fantastic, but sadly the service at the restaurant very much let it down. Our dim sum platter arrived first, only beaten to the table by the prawn crackers that had been delivered with our drinks. We tried to take our time in eating our food, painfully aware that the children were just sitting there watching, but at the same time, we didn’t want to let it go cold and we were waiting a long time for the other dishes to appear. M’s King prawns were the next to arrive, eventually followed by the Salt and pepper chicken and Jasmine rice. G picked at some of the rice and chicken, patiently waiting the arrival of the Aromatic duck, which is her all-time favourite Chinese dish. By the time it reached the table, there wasn’t much left for the rest of us and unbelievably we then had to chase down the lettuce leaves – they delivered normal pancakes by accident – and my bowl of soup. Everything did eventually arrive and the food was absolutely delicious. The poor service we experienced was a huge disappointment that spoiled what was otherwise a memorable dinner and would certainly make Mike and me think twice about visiting another time.

 

Marks: G – 9/10     M – 8/10

A Brewing Storm

Yesterday a social media storm hit the EGID world, especially for those of us who are, or who have been, under the care of Great Ormond Street Hospital over the last few years. The reason? A story published by The Guardian newspaper on Saturday night, which has raised questions about the treatment of patients of GOSH’s gastro department following a huge number of complaints from parents and successive reviews of care carried out by the RCPCH (Royal College of Paediatrics and Child Health) since 2015.

As a parent to a child with an EGID diagnosis and one that was given by GOSH at that, this story is heart-breaking and yet one that I know needs to be told. Whilst M has never been subject to the “aggressive treatment” described in the reports published by The Bureau of Investigative Journalism (see here and here), we have struggled with our own issues rising from some of our experiences during inpatient admissions at GOSH and I have always been open and honest in sharing these via my blog. We have made complaints, challenged M’s consultants and spent time talking to the Chief Exec to try and make sense of it all and improve the way that, not just M, but other children have been treated whilst they’re there.

Last summer I shared my fears about the huge question marks that have been hovering over the EGID diagnosis for a while and how they could impact on the treatment and care that M receives from the medics in our lives. This week my fears grow even greater as the TBIJ documentary investigating these allegations about GOSH will be aired on ITV1 at 10.40pm this Wednesday, April 18th. Whilst I know that the documentary is seeking to reveal the truth behind some of the treatment decisions made for certain families, there will undoubtedly be concerns raised about the veracity of the diagnosis of EGID itself and with that comes inevitable questions about whether any of those diagnosed with EGID are genuinely living with it, or not. Comfortable viewing it may not be, but I will be watching it – and probably keeping my eye on the resulting social media frenzy too.

At the end of the day, I’m not really that bothered about what the label itself actually is for M – EGID, MCAS, food allergies or something else – as all I want is a better life for him and the others who find themselves in the same boat. As I said last year,

“For us, and for the families we’ve got to know who live with it, EGID is a part of our lives that we have to accept and learn to come to terms with, no matter what discussion is being had in the medical world. It might not be clear whether EGID is in itself the final diagnosis, or if it is simply part and parcel of a larger problem that is, as yet, unknown, but it is our reality and it shapes every step that we take.”

*You can read a more in-depth, first-hand commentary about this GOSH story here