Category Archives: Chronic Illness

Eating Out with Allergies in Liverpool

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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

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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

And I’m back!

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You might have noticed that my blog has been quiet for a few weeks and, in time, I will explain a little more about the need…my need… for an extended silence as life has happened around us. However, we’re home after some family time away from home over the Easter holidays and I’m back with a vengeance with just so many reviews, recipes and photos to share from the last month or so.

But, before I get to the fun bits, I thought there was a much-needed health update, which is desperately long overdue. On the medical front, things are still ticking along without much intervention from anyone other than us. We haven’t been seen at GOSH for over a year and I have no idea when or if an appointment will come through the door. The gastro department there are very much working on moving patients back into local care and whilst I have steadfastly refused to let them discharge M from their care fully, they have definitely taken a step back and are in the background in an advisory capacity only should we want or need to call on them.

It also feels a little as if our local hospital has shrugged their shoulders with something of a “…we don’t really know or understand what’s going on with him…” attitude and are touching base with us on a fairly infrequent basis. I don’t really blame them as, for the most part, M is just going along as always and frankly I’m certain that I know far more about managing the ups and downs of his EGID on a day-to-day basis than anyone else. The one biggest change that has hit us has been the confirmation that there is almost definitely a mast cell problem lying alongside the EGID, but as the treatment is more or less the same for both, that diagnosis hasn’t made a difference to him or us in any way.

Food-wise, we’re now tentatively up to around the 9 or 10 food mark, having introduced onion, bacon and bananas on a regular basis and allowing the occasional other food creep in when circumstances call for it and we can be reasonably confident we can manage the outcome. These 3 foods have really added to my repertoire of recipes and make cooking so much more interesting and flavourful for M. Holidays continue to be the time when we really stretch our boundaries and whilst there are always consequences to live with – some of which are easier than others – our approach has led to a much happier M.

Both children are doing well at school with glowing “short” reports and parents’ evenings for them. G has selected her GCSE options with relatively little fuss or argument or discussion and we’re heading with a little trepidation into the wonderful world of humanities combined with dance. She recently took and passed her Grade 3 clarinet exam, a day I wasn’t sure we’d ever see and is also teaching herself to play the keyboard, guitar and ukulele in any spare moments she finds at home. G and M also recently took part in a regional Stagecoach performance celebrating 30 years of Stagecoach and loved every moment of it. It was great to watch them from the wings (I was back in chaperone role once more) as they danced and sang with enthusiasm on stage. As you can see, it’s been a busy few weeks and there’s just so much to share that I’m not entirely certain where I’ll begin!

Hitting 12

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It may be International Women’s Day, Jedi Day (thanks to Mark Hamill’s Hollywood star) and the eve of National Science week, but in our household, there’s only 1 thing that March 8th marks and that’s young Master M’s birthday. Except this year he’s not quite so young, having hit 12 years already – and just how did that happen? – and I can’t believe that this will be the last year that we only have 1 teenager in our household.

Today has been a great day at school for my youngest and despite a reluctant start to the day, he came bouncing back to the car at 3.30pm, keen to share everything that had been good about it. It’s not been the celebration that perhaps it might have been given the topsy-turvy nature of the last 2 weeks for our family, but it will be the celebration that we want it to be.

Happy 12th to my beautiful, strong, sensitive boy; who pushes the boundaries at every step, but has a true heart of gold xxx

Show Your Rare

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The last day of February every year is recognised as Rare Disease Day. It’s a day to raise awareness of rare diseases and acknowledge the impact they can have on those living with them and their families. This year marks a decade since the first Rare Disease Day was launched and will see thousands of people from across the world come together to advocate for greater patient involvement when it comes to research into rare diseases.

Rare Disease Day was launched on February 29 2008 as “A rare day for very special people,” and has grown from being recognised in just 18 countries to now hosting events in over 100 countries worldwide. EURODIS, the European Organisation for Rare Diseases, organises the international campaign, whilst National alliances and other patient organisations host events locally. There are over 6,000 rare diseases known to be in existence and 80% of these have been identified as having genetic origins. Astonishingly, approximately 5 new rare diseases are described in medical literature every week.

Rare diseases can affect everyone, they’re not fussy about who they pick on. Over 3.5million people in the UK are affected by a rare disease, which equates to 1 in every 17 UK nationals. Somewhere between 50% and 75% of rare diseases will affect children and scarily, 30% of rare disease patients will die before they reach their 5th birthday. The symptoms of a rare disease are frequently multiple and varied and not only are they not exclusive to that illness, but neither are they all experienced by all patients, which makes diagnosis a long and drawn out process. All too often the diseases are misdiagnosed and beneficial treatment can be unavoidably delayed. A lack of scientific knowledge and consensus throughout the medical community can add to the complexity of reaching a diagnosis and adds significantly to the burdens placed on the patient and their family.

Imagine being told that your child has a chronic illness that neither you, nor most of the medical professionals you’ll end up meeting from that point on, can pronounce – or have even heard of until that moment. Imagine finding out that that illness is rare: that around 1 in 10,000 people are diagnosed with the most common form, but that your child has one of the rarest forms and that there is little research into it. Imagine learning that even the medical community struggles to reach a consensus about this rare disease and whether it really exists or is simply part of a much bigger picture – and having to live with the reality of this rare disease and its effects on your family’s life on a daily basis.

And then imagine finding out, less than 5 years after the time when that initial diagnosis was finally made, that another rare disease has landed on your table and you need to find out as much as you can about it to make sure your growing child is receiving the very best care possible. That happened to us about 6 months ago, when we started to explore whether M could also be living with Mast Cell Activation Syndrome, or MCAS. It seems highly likely that he is as this is a condition that closely resembles EGID with its symptoms and is a problem with another type of blood cell: the mast cell. Treatment-wise, there is nothing more we can do than we are already doing in terms of his medication and dietary restrictions and so in many ways this is just another label to pop in our pocket and pull out from time to time. All we can do is stay positive, keep encouraging him to live life to its fullest and enjoy every moment we can.

 

Daddy’s new toy

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Somehow, and I’m not entirely certain how, we have limped our way through what has proved to be a tough 5-weeks and finally Term 3 has drawn to a close and half-term has arrived. M’s health was hit hard when he came down with Aussie ‘flu just into the New Year and the term has been turned topsy-turvy as he’s struggled with high temperatures, heavy head colds, aching joints, lethargy and low energy levels. He’s also been trying to cope with unbelievable bouts of insomnia since the end of last term, a problem that has taken its toll not only on M, but the rest of the household too as Mike and I have juggled home and work as well as the impact of the serial bed-hopping that has become an almost nightly occurrence. Except on Wednesdays. I’m not yet sure what makes Wednesdays so special, but over the last couple of weeks, M has achieved something that has been such a rare event that I can pretty much count the number of times it has happened in his lifetime on the fingers of one hand. In bed – his bed – fast asleep and then nearly 10 blissful hours of interrupted sleep for the rest of us!

One of the highlights of half-term has been opportunity to finally try out the new toy that Mike had for Christmas. A stove-top smoker. Following the discovery of what quickly became a new favourite with M when we were in Greece last summer, Mike has been exploring whether there was any way to replicate the delicate flavours of this smoked chicken at home. He talked a few times about the possibility of buying a smoker, but as so often happens in our household, the chat didn’t lead anyway and eventually the idea faded away into seeming obscurity. However, whilst all thoughts of a smoker had disappeared from Mike’s head, it had taken up permanent residence in my mind and I was undertaking some research of my own.

Finding the perfect Christmas present for my other half is always a challenge, particularly as his birthday is just 2 months before, but waiting until December gave me enough time to read around the subject and pick out what I hoped would be the perfect choice. It came as a complete surprise on Christmas day and a present that both Mike and M were looking forward to experimenting with in the New Year. Sadly ‘flu got in the way of any such trials in January, but Mike being at home with the children for half-term gave them the perfect opportunity to give the smoker and a variety of wood chips a whirl.

By the end of the week, it turns out that Mike’s worked hard to see just what flavours he can produce and M feels that there’s still some work to be done to perfect the chicken to his exacting standards. It appears it’s all too easy to over-smoke the meat and end up with a bitter dinner, rather than the aromatic flavours we were hoping to find. M has suggested adding lemon and herbs to help flavour the chicken and I’ve no doubt that Mike’s new toy will be a source of much fun and experimentation over the coming months.

#FFFA18: The Shortlist

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It’s really only been a couple of weeks since I was a third-time judge at this year’s FFFA and the exciting news is that the shortlist for the Awards has already been published. I absolutely love scanning through the shortlist, even for those categories where I’ve been involved in the judging, because I find it so encouraging to discover a plethora of products, many of which I’ve never heard of before, which will make such a difference to those living with a variety of food allergies. As well as those I’ve already identified as particular highlights for me on the day, I was excited to see La Crèmerie’s rice yoghurt detailed on the Milk Product Alternatives list. I actually discovered this rice yoghurt during my visit to the Foodmatters Live conference back in November and whilst I have yet to try this with M, I know it’s something that could be a real game-changer for him and I’d love to see this do well in the overall Awards.

What has been even better for me this year than list after list of amazing foods, is the final named category: the FreeFrom Hero Award. Back in December I was asked if there was anyone I would like to nominate for this special category and it’s been really encouraging to us as a family to see our 2 nominees appear on the final shortlist. You can only imagine my delight this week as I received copies of the emails that have been sent to tell our very own heroes of their success. When you look at the list I’ve no doubt that you’ll immediately be able to identify one of the nominations I made, that of Steve Whitaker and Jason Conners, the cooks at Over The Wall. Ultimately I don’t know whether either of our suggestions will be the winners of the category, but I wanted to share my reasons for nominating this fantastic pair for special recognition at FFFA18:

Your reason for nominating them: M’s rare gastro condition, complex food allergies, restricted diet and associated problems has meant that he has never been able to stay away from home except with his Grandma. At nearly 12, he has never stayed away on a school camp or even had a sleepover with friends. In 2016, he was offered a place on the South Health Challenges Camp run by charity, Over The Wall, which meant he would be able to stay away from home for a week, fully looked after by an amazing group of volunteers who cheerfully give their time to support these children, who suffer with life-changing illnesses.

In preparation for the week, I spoke to OTW several times to discuss M’s dietary needs and at least 2 months before camp, I was sent a sample menu of the food that the chefs were planning to cook for him based on his extremely limited diet (just 5 foods plus 1 oil and sugar), which was truly amazing and that M loved the sound of. We touched base the week before camp to just check whether there were any changes and when we arrived at camp, the staff took time to meet with me to discuss all of his needs.

M ate like a king the entire week he was away and reluctantly told me that “Sorry Mummy, but their food was even better than yours!”. He was kept safe, had no allergic reactions because of their incredible awareness of the care that needed to be taken, was able to make friends with others facing similar health challenges, tried out so many experiences he’d never been able to have before and just felt like a child as his health problems firmly took a back seat to the more important job of him just having fun. As Mum, I felt confident that they knew what they needed to do to support him and have subsequently seen just how amazing their care can be when they called whilst G was away on sibling camp because they were concerned that she wasn’t eating the GF/DF food they were preparing for her.

We are hoping that he will be able to go to OTW camp again this year, but are just so grateful that he even had that opportunity to experience it once. These chefs (and all staff to be honest!) really deserve recognition for making M’s first experience of being away from home such a positive one.

The results will be announced on Twitter, on the evening of April 17th (@FFFoodAwards) and I’m hoping that we might once again be able to be there to recognise the hard work and incredible dedication of all those shortlisted finalists as well as celebrating the success stories of the worthy winners.

Every little helps

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This week marks the start of the 2018 Free From Food Awards (#FFFA18) and another stint of judging, something that has become a real highlight of my year, especially as it brings a highlight to an otherwise grey and somewhat miserable month following the excitements of Christmas. Ever since the list of fellow judges reached my inbox, I’ve been looking forward to the day itself as I will be a judging a new category to me with a group of fantastic bloggers and friends that I’ve got to know over the last few years and I’ve no doubt it’ll be a day filled with laughter and chatter and good-natured banter.

However, with the FFFA just around the corner, I’ve realised that I owe an apology to a fellow judge from last year’s awards, who gave G in particular a great opportunity after we met and who I never got round to thanking via my blog. Mike and I were fortunate to meet Nicki, a Brand manager from Tesco, who was keen to send some samples of the then new range of Freefrom chilled meals that Tesco were about to launch. A cool box of meals arrived with us and G, Mike and I all enjoyed trying and tasting the variety available to anyone looking for a gluten-, dairy- and egg-free ready meal. They weren’t all to G’s taste, but it was wonderful to see the selection she was able to choose from for dinner.

From traditional Chicken Hotpot with stuffing and Beef casserole with dumplings – both of which G loved – to the more exotic flavours of Katsu Chicken curry and Green Thai Chicken curry – which became firm favourites with Mike and me – there really is something for everyone. G is not always the bravest when it comes to trying new dishes and some of these really did push her taste buds to their absolute limit, but I was impressed, for the most part, with the quality of the meals as well as their flavours. The biggest disappointment was the two Italian dishes: Chicken, Bacon and Mushroom pasta and Pulled Beef and Red Wine Ragu with Spaghetti, neither of which survived being frozen and then recooked at a later date. Both the pasta and the sauces became watery and were, in our opinion, frankly inedible by the time they reached the table. It was disappointing as pasta is usually a favourite in our household, but having had surprising successes with some of the other meals, my overall review would definitely be positive about this new range. As much as I love to cook from scratch, and usually do, the opportunity to be able to keep a few firm favourites in the freezer for those unexpected times when being able to throw something into either the oven or microwave is much-needed is absolutely invaluable to me as a working Mum and I’m grateful to Tesco for creating these dishes.

Just the other day, I was reminded once again of just how far the supermarkets have come with their allergy-friendly offerings since our freefrom journey started, when I spotted this fantastic array of dairy-free choices in the fridges of our local Tesco. It was an absolute delight to be able to take my time exploring all that was there to see what treats I could find for G to enjoy at the end of her meals. These are exciting times for those of us in the allergy community as more and more shops, cafes and restaurants strive to improve and increase what they offer to those on restricted diets and I’m delighted to be a part of it.

Taking Over once again

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In November 2016, G and M were lucky enough to be invited to participate in the first ever Takeover Challenge at GOSH. They spent the day running the Development and Property services department at the hospital and even managed to somehow convince the staff to take them onto the building site of the new research centre being built opposite nearby Coram Fields. One of the jobs they had undertaken during that Takeover Day was to help design the hoarding to surround the building site and we were delighted to see it in place when we visited GOSH for the Big Youth Forum Meet-Up in mid-October as both children got to see their hard work actually being used in real life.

 

So it will come as no great surprise that the minute they heard that there would be another opportunity to Takeover at GOSH this year, both G and M leapt at the chance. Unlike last year, when they opted to be part of the same department, this year they determined to do different things and each took on very different roles with G joining the ICT department as an ICT project manager, whilst M became a clinical scientist for the day. We were fortunate that their secondary school recognised the value in them attending this day and were happy to authorise their day off, something that M in particular was delighted about. I was already in London for the week attending the Foodmatters Live conference and so Mike set off from home extremely early on the Wednesday morning to get the children to the GOSH reception area in time for their respective days to start.

We had arranged that I would meet up with them for tea and over an early supper at Wagamama in Leicester Square, I was regaled with excited tales about the adventures of their day. G’s day was spent learning about how the ICT department is involved in the day-to-day running of GOSH and more specifically understanding how the staff ICT helpdesk is run and looking at solutions to common IT problems. G had an opportunity to visit different hospital departments and help resolve the problems some staff members were experiencing and even managed to successfully close a couple of cases herself. Her final task of the day was to visit the brand new clinical building that has recently opened at GOSH and understand how the decisions around what ICT equipment to provide for patients are made. One of her mentors for the day also took her to visit one of the laboratories in the hospital knowing that M was based there, although she didn’t spot him during her visit.

M’s day was focused on understanding the role of the clinical science team at GOSH and in particular learning more about gene and cell therapies as well as the research that is undertaken in the hospital. He was keen to take on this role because of the rare status of his own condition, EGID, as it demonstrated just how important this type of research is. M spent the day  learning how to split blood samples into different cell types, preparing the cells for analysis, generating DNA fingerprints and analysing DNA for mutations. The team also showed him what eosinophils look like when they’re put under the microscope and gave him an insight to what his scopes might have looked like prior to his diagnosis. As usual, M learned a lot from his day and when he and I attended our local hospital a week later for a set of bloods to be taken, he was keen to explain to the nurses there just what would happen next with the samples they were taking from his arm.

Both G and M had an amazing day at GOSH and we are, as ever, extremely grateful to the YPF and youth liaison team who not only offered them this fantastic opportunity, but also made sure the day was a huge success for them both. I know M already has his sights set on Taking Over yet another department next year, but we will just have to wait and see what happens!

Unexpected Christmas treat

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Whenever I write a review and share it on my blog, I do so because I’ve found a product or place that I’m impressed with and want to spread the word throughout the allergy community. Sometimes I’ve been fortunate enough to have received a freebie or two in advance for us to taste test and review – something you will always see declared on my posts – and I guarantee that we will always be honest with our opinions. It’s true that I rarely share things I don’t rate, although when I’m less than impressed with the service we’ve received, I will always make sure I shout that from the rooftops too. However, I never review with an expectation that we will receive something afterwards, though I’m honest enough to say that it’s always nice when we do!

That’s why, when I wrote about my discoveries at the FoodMatters Live conference a couple of weeks ago, I did so because I was just thrilled to have some new goodies for M to safely enjoy, which is always fantastic especially in the lead up to Christmas. What I didn’t expect was this marvellous parcel that was sent on to me just a few days after my post was published:

M spotted it propped up against the front door as we drove onto our driveway after school on Tuesday and was eager to be the first out of the car and to the door to pick it up and discover what had been delivered. His glee when he spotted the “Freedom Mallows” label on the front was unstoppable and he couldn’t wait to get it to the kitchen table and open it up. I had been in the know, as Elvin had contacted me asking for a postal address, but I’d only expected a small bag, or maybe 2, of mallows which I could sneak into their stockings on Christmas Eve. The treasures hidden within this box are immense and no stocking in our household is big enough to hold it all. Without a doubt, the excited squeals of both G and M which shook our house reverberated around our village and I just wish I could adequately capture that moment of absolute joy to share with you all.

A big thank you to Elvin at Freedom Mallows – you’ve made 2 not-so-small-anymore children very, very happy!