Category Archives: Chronic Illness

A Canadian Treasure Trove

Whenever and wherever we travel, I also keep a beady eye out for any new foods that are safe for both children. I do, of course, take an ample supply of M-friendly snacks with us as there are no guarantees that we’ll find anything that he can eat, but I always keep my fingers crossed that his hopes are met, if not exceeded whilst away from home. This year I was especially hopeful that we might find a handful of items for them both, though our last visit to Canada showed us how challenging it can be to avoid soya and corn, which can be found in the most unexpected of places.

The good news is that we did found some great snacks and even managed to bring some of them home with us to keep G and M going for a short while at least. We discovered them all at the Independent grocery shore on the shore of Lake Huron and don’t really know how readily available they are elsewhere, but I’d definitely recommend giving them a go if you get the chance. These are just a few from this hidden treasure trove:

Soy-free Vegenaise – G absolutely adores mayonnaise and can, of course, eat “normal” brands without problem. However, M often feels he’s missing out and it’s taken a long time to find a rice-based version which he can eat and even then it’s not that easy to buy it. Discovering this brand just sitting in the fridge alongside other food items was so exciting and something I hadn’t expect to be able to replace during our holiday. M said it tasted great, G was equally happy to eat it and I was delighted to carry a jar around with us for the entire 2 weeks we were there.

Laiki Rice Crackers – another big success with M were these rice crackers, not least because he had a choice between their red rice and black rice versions, something he rarely gets in everyday life when it comes to his food. They proved to be the perfect accompaniment to lengthy car journeys, of which there were several, and were surprisingly moreish, with the pack not lasting long once opened.

Daiya Cheezy Mac – It’s a well-known fact that I am a big fan of Kraft Dinner, a boxed ready meal of macaroni cheese that became a staple of my diet whilst studying at Ottawa University over 20 years ago. G similarly loves macaroni cheese and I was thrilled to find Daiya’s gluten- and dairy-free boxed equivalent for her to try. This was a resounding success with my sometimes picky eater and we brought several boxes home with us, although they’ve all disappeared now!

Made Good Crispy Squares – despite the previous successes achieved, the biggest hit of our holiday was the discovery of these Crispy squares, which came in both Chocolate chip and Vanilla flavours and made M smile for days. They came at the perfect time as we had found several gluten- and dairy-free treats for G, but the prevalence of both soya and corn, neither of which M can tolerate, was making it near impossible to find something safe for him to enjoy. I had promised to make him some banana cookies whilst we were staying at Grandma and Grandpa’s house, and whilst I did that also, the addition of crispy squares to our rucksack each day made a huge difference.

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Eating Out with Allergies in Toronto

There’s very little we love more as a family than finding the perfect places to be able to go out and eat a safe meal together. Having found some wonderful restaurants and cafes in both the UK and abroad since M went elemental 4 years ago, we couldn’t wait to see what Toronto might have to offer. The first part of our holiday spent near Lake Huron with Mike’s parents meant that we ate home-cooked food with a few very welcome additions that we discovered at the local Independent grocery store; whilst at the Beachwood resort we were very grateful to their accommodating chef, who agreed to whip some plain rice, chicken and bacon for M to enjoy.

It was once we were downtown in Toronto that we really had a good chance to get out and explore what restaurants we could find. I had taken the precaution of packing our usual extra suitcase full of safe foods before leaving the UK, had kept it topped up with the new treats we had found and booked to stay in a self-catering apartment fairly close to the lake – just to make sure every base was covered when it came to feeding my hungry pair. Our biggest disappointment was that there are no longer any Hard Rock Cafes in Toronto, so we had to search hard to find a great alternative.

Our day spent at the CNE meant that we didn’t venture too far to find our meals, instead heading into the expansive food building to work out what from the hundreds of offerings might be safe for both G and M to eat. Mike and G went in one direction to find her ideal lunch, whilst M and I disappeared in a different one to find his. My wonderful sister-in-law managed to secure a table in front of the Colossal Onion booth and we all eventually wound our way back there to actually sit down and enjoy some food. M was thrilled to find some apple fries dusted with sugar and I then queued an inordinately long amount of time at the aptly named Bacon Nation to buy a cup of bacon to provide his protein, where I refused to even consider the purchase of the $100 Gold Burger, though I did see someone else carrying one away from the counter. Fortunately, we were carrying a number of rice-based snacks around with us too, so it wasn’t the completely unbalanced meal that perhaps it sounds!

For our one meal out, we chose to go to Jack Astor’s Bar and Grill, thanks to some frenzied internet-searching on my part to find an allergy-friendly restaurant to try. They had a good array of gluten-free offerings to choose from and both children opted for a bacon cheeseburger, without the cheese. Decisions made and food ordered, G and M enjoyed writing and drawing on the paper tablecloths whilst they waited for their meals to be cooked. The plates of food that arrived looked amazing and didn’t last long with either child – a sure sign that the food is good. The portion was as large as we’ve come to expect with Canadian servings, but that didn’t stop them eating it all, although we had no complaints about being hungry for the rest of the evening!

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.

 

Quick summer catch-up

So the last 6 weeks or so have been filled with these moments and memories. Lots of posts to follow to catch up on all that we’ve been up to.

Exploration through Enrichment

One of the things I love about G and M’s secondary school is the Enrichment week they run in June. Every year the young people are encouraged to explore new activities and opportunities during the week and try their hands at things they perhaps haven’t had the chance to experience before. When G was in Year 7, she opted for Bush Camp – an African-style adventure that involved 4 nights away from home sleeping out under canvas with campfire dinners, quirky showers and earth toilets for her home comforts. If there’s one thing that proves my daughter doesn’t always follow in my footsteps, this choice was it as I am a reluctant camper at best and it would take an awful lot to convince me that this could be considered as a fun week away from home. However, G loved every moment and couldn’t wait to choose her options for both Years 8 and 9.

Whilst G had determined that this year was going to be the year for a week away at pony camp in the Brecon Beacons, M’s choices were limited by the reality that he wouldn’t be able to spend a week away from home. We made the decision right at the start of his Year 7 year, not wanting to put him through once again the trauma of last-minute decisions and the inevitable disappointment that he experienced when we had to conclude that he couldn’t go away to the end of term Year 6 camp last year. We opted that M would be based at home for the week and instead he had to  the activities that he would participate in during the school day.

M decided on Action Adventure, where he got to try his hands at high and low rope courses, archery, building a trebuchet and bush-craft skills over the first 3 days of the week. Day 4 was designated as a community day, which was designed to give the children an opportunity to understand their role in our local community and to give a little something back. Some children did bag-packing at a local supermarket, others chose sponsored activities to raise money for local charities and M’s group of year 7s built wooden bird-boxes to be put up in the grounds of their school.

On his final day, M was keen to join the trip to the Tamworth snowdome, although he was disappointed that he had to ski, rather than being able to show off his rapidly improving snowboarding skills. He has been learning to snowboard since Christmas and has been coming on in leaps and bounds on the artificial slopes. He didn’t find it as easy to ski as he had hoped and the combination of time spent focused on skiing and ice-skating meant that he and his friend slept on their way back home. Both children had a great enrichment week and I’m grateful that this fantastic opportunity has been available for them both to fully experience, explore and enjoy. Not only am I impressed by the variety of opportunities they have to choose from, but the school did a great job of keeping the parents of around 900 students updated about their return home on the final day, which is no easy feat!

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.

The Hunt for Nessie…and other adventures

Inverness was the location for yet another flying visit on our whistle-stop tour of Scotland, but was one we all enjoyed hugely and it even saw both children expressing a surprising yearning to move North as they gazed at properties in the estate agents’ windows. Inverness itself was not the primary focus of our visit, but rather nearby Loch Ness, which M insisted was a place we absolutely couldn’t even consider missing out when we were practically passing right by the proverbial doorstep. Our time spent there was tight, but we managed to squeeze in everything we wanted to do and even found an unexpected bonus before we left again to travel on to our next destination.

It was whilst we were in Inverness that the snow that had been dogging our every step finally caught up with us, but it didn’t spoil our morning’s trip to Culloden, the site of the final battle of the Jacobite rising in 1745. Despite M’s reluctant traipse around the visitor centre itself, the rest of us enjoyed the interactive displays which carefully talked the visitor through both sides of the story and depicted the events that led to the final battle. It is not a part of British history that either Mike or the children really knew at all and I enjoyed brushing up on my rather scant knowledge too. Mike and G took their time reading the displays, whilst M and I moved at his usual faster pace as I desperately tried to cut through all the facts to capture his interest in the story itself.

Being the Easter holidays, there were some great children-friendly activities available for younger visitors and they appealed to both M and G, who were fascinated to learn more about the weapons used during the battle as well as glimpsing a small insight into the household essentials of the time. We even participated in the family orientated quiz that was held in the last exhibition space and M proved once again that although he moves fast, he’s able to pick up a surprising amount of information in a short space of time and was able to answer with ease questions that left the rest of our side scratching our heads. Once we had finished exploring all that the museum had to offer on the inside, it was time to wrap up warm and venture out onto the snowy battlefield itself. Despite the grey skies and intermittent snowfall, we managed to make our way all around the site, although the return journey back to the warmth was at speed. Neither child had been particularly interested in visiting Culloden in the first place, so to make a full morning of it counted as a real success in our book!

We enjoyed a picnic lunch in the car as we travelled from Culloden to Loch Ness itself and stopped en route to take a few snaps of the beautiful scenery we were passing. Our destination for the afternoon was the Loch Ness Centre and Exhibition, which talked us through the history of Nessie and all of the scientific (and otherwise) investigations into whether she really exists. The children had the chance to investigate the photographs and evidence themselves and drew their own conclusions about whether the Loch Ness monster really exists. It was a fun and interesting exhibition and I particularly enjoyed the last room, which talked about other incidents and discoveries in the Loch Ness area, rather than focus on Nessie herself. A quick jaunt through the gift shop heralded the end of our day out and we headed back to the hotel for some much-needed sleep before moving on once again for the final destination on our tour of Scotland.

Scottish Engineering

Looking back now, 2 months on since our Scottish adventures, I can’t believe just how much we did in what really was so short a time. Having “done” Glasgow, our next major destination was through the beautiful, snow-tipped Cairngorms to Inverness, but not before we had stopped off to experience 2 unmissable sights – the Falkirk Wheel and the Kelpies. When we first started planning our trip to Scotland, so many family members and friends told us that we absolutely had to visit the Falkirk Wheel and warned us to pre-book our tickets to make sure that we didn’t miss out that we both took heed and booked our Easter Sunday day out.

The engineering wizardry of the wheel, which was the world’s first rotating boat lift when it was opened in 2002 to link the Forth & Clyde and Union canals, had M absolutely hooked from the moment we showed him the website and he couldn’t wait to actually experience it in person. The transition from the lower canal to the higher one (and back again) is unbelievably smooth and you hardly realise you are moving 35 metres into the air on a remarkable man-made structure, planned in Lego and powered by the energy required to boil just 8 kettles for tea. Without a doubt, it is an impressive sight to observe and having done our “turn” on it, we settled in at the cafe for a light allergy-friendly lunch accompanied by a side order of a great view of the wheel doing its thing as we ate. 

The tour guide on our boat gave us so many facts and figures about the Wheel that it seemed almost impossible for the children to absorb many of them and yet, even now, they still remember the ones that particularly fascinated them whilst we were there. As we looked out from the top canal towards the Firth of Forth, we heard about the Kelpies just a short drive away and knew without a shadow of a doubt that we absolutely couldn’t head further north until we had taken our horse-mad girlie to see these amazing structures.

Built in a phenomenally short space of time in 2013 to form a gateway to the eastern entrance to the Forth & Clyde canal, this monument encapsulates the mythical beauty of the water spirits of Scottish folklore whilst forming a fitting tribute to the horse-powered heritage of Scottish industry. These 30-metres high horse heads are simply breathtaking to see and although we didn’t have time to enjoy the Easter sunshine with a walk through the Helix parkland project, we all relished the opportunity to stretch our legs and even perfect some dance steps on the way to the structures. All in all, it was a perfect way to spend a peaceful Easter Sunday with family and one that perfectly combined so many varied aspects of the Scotland we were slowly discovering each day.