Christmas Countdown

The beginning of December has finally arrived. With it comes freezing temperatures, roaring log fires, Christmas trees, pantomimes, carol-singing and, in our household, some frantic last-minute plans for impending teenagehood and a quick anniversary celebration if we can only find the time to squeeze it in. And yes, we perhaps didn’t plan things too well – can you guess that I’ve heard those comments just the odd once or twice before?

These days most children seem to expect a chocolate advent calendar as a necessary part of the Christmas countdown, but what do you do when your child has allergies and can’t enjoy something that’s the same as all their friends? M has asked if we can bake enough of his safe gingerbread cookies for him and G to enjoy 1 everyday between now and the big day itself. It is, without doubt, one of those things that always features highly on any allergy parents’ to-do list at this time of year as it takes some time to find the perfect, safe alternative, but there are some really great options out there and I thought I’d share some of my favourites with you:

And not forgetting one for those much-deserving Mummies out there (it contains gin in case you couldn’t work it out)!

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The Best Eateries in the Country

FFEOA 16 200X200Last week saw the third annual Food Matters Live event being held at ExCel, London. This event, which brings together hundreds of visitors, exhibitors, speakers and organisations from across the food and drink industry, aims to “…enable collaboration and innovation to support a sustainable food landscape for the future…” as well as encouraging cross-sector discussion and collaboration. I had first heard about it during the FreeFrom Foods Awards and was keen to attend if at all possible. Unfortunately, the necessary childcare arrangements just couldn’t be worked out to allow me to attend the 3-day event, but I did take some time to follow what was happening via some very active Twitter feeds. Tuesday afternoon was of particular interest as the winners of the FreeFrom Eating Out Awards 2016 (#FFEOA16) were being announced live at the event and fortunately coincided almost perfectly with the hour I spend sitting outside of M’s lesson at the Dyslexia centre, allowing me to focus on my Twitter feed to see the results as they happened.

Earlier this year I wrote about the launch of the 2016 FFEOA and the exciting news that Executive Chef, Dominic Teague of Indigo at One Alwych had won the first ever Pathfinder Award given to those who have “…really thought outside of the conventional freefrom box…”. Dominic not only accepted his award on the day, but then also took on the role of presenting the awards to all those worthy winners. When you look through the list of winners, goldstarsit becomes immediately obvious that there have been huge strides forward in the realm of catering for those with allergies and it was amazing to see so many fantastic food service providers from across the UK on the list.

I was delighted to see that each of the awards category was hotly contended and included well-known names such as Wetherspoons, CentreParcs and the Rainforest Café amongst its success stories*. These are places we haven’t yet dared to venture with M and his restricted diet, but will definitely consider visiting in the future when we’re in the vicinity. We were also thrilled to see some of our personal favourites winning well-deserved accolades including M’s all-time favourite, Borough 22 and our newest discovery, Café Nouveau in Frome. It was also good to spot the odd recommendation within reasonable driving distance and we’re already planning when we might be able to make some visits and try the freefrom offerings out for ourselves.

14650222_315615772146548_6413808020440687219_nThe overall winner was the Labyrinth Holistic Café, a community café found in Stockton-on-Tees. It is run as a not-for-profit community enterprise and is keen to welcome everyone, from all walks of life and no matter what their diet. The reviews given by some of the FFEOA16 judges commended the extensive menu, amazing fresh food and attention to detail that led to it being given the highest recognition.

Next year’s Food Matters Live conference is being held from November 21-23 2017 and I’ve already pencilled it into my diary as a must-do event for my year.

*a full list of winners can be found by following this link

Takeover Challenge 2016

img_12651When it comes to thinking they know it all and can do it all better than the adults in their life, my kids are world champions. The frequency with which Mike is told that “Daddy, you just don’t understand..” is high and he often finds himself trying to defend his position to an irate 10 year-old, even on matters where he quite obviously has far more expertise than anyone else in the room – think anything building-related given his career as a chartered surveyor. There is a certain level of deference awarded to me, after all I’ve proved over and over again that Mummy knows everything there is to know and, besides which, she really isn’t someone you want to get on the wrong side of ever; but the opinion of just about every other adult is scrutinised carefully and often rejected on the basis that they just don’t understand either. M has some very strong opinions and would, and sometimes has, happily argued the case that the sky is green for hours, often with a reluctant truce having to be declared before World War III breaks out across the dinner table. As for G, well she has perfected the teenage eye-roll ahead of hitting her 13th birthday and it’s often accompanied by a surly shrug of her shoulders and a mumbled “Whatever” as she heads upstairs to the seclusion of her bedroom.

redevelopment-wed-2So, you can imagine my thoughts when G and M were invited to be a part of this year’s Takeover Challenge at Great Ormond Street Hospital through G’s involvement with the GOSH YPF. This is a fantastic project run during November by the Children’s Commissioner and sees organisations and businesses across the UK opening their doors and inviting children and young people to take over adult roles. The Challenge seeks to “…put children and young people in decision-making positions and encourages organisations and businesses to hear their views. Children gain an insight into the adult world and organisations benefit from a fresh perspective about their work.” Excitement has been building in our household for weeks as G and M looked forward to finding out more about how the hospital is run and last Wednesday couldn’t come soon enough for my two excited children. I was delighted for them to have this experience, but my true sympathies lay with those adults who would be brave enough to let this opinionated duo step into their shoes, even for a day.

The children were invited to take-over the Developmimg_12641ent and Property Services department as Director and Deputy Director for the day. The information they received in advance told them that they would have a “behind the scenes” tour of the hospital with opportunities to learn about the systems that help the hospital to run efficiently, including visiting the plant room with engineers, learning about the food ordering system and how the meals get to the children on ward and understanding more about how the hospital plans and designs spaces to be fun and interesting for the patients, their families and the staff. Ahead of the day itself, both G and M were asked to complete a profile to be shared with the Development team, explaining a little about why they were interested in this role as well as what their involvement with GOSH is. G had 2 key areas of interest – finding out how the kitchens cater for patients with food allergies and how new spaces and redevelopment work is done – whilst M was eager to see the plant and machinery that makes the hospital run and find out more about the technology in place.

img_12601Determined to dress for the occasion, M’s clothes were chosen the weekend before to make sure that everything he needed was washed and ironed, unlike his sister, who typically left everything to the last-minute and was then put out when her first couple of outfits were deemed unsuitable by me. Taking the challenge very seriously indeed, M solemnly told me that I needed to make sure he was in bed early on the Monday and Tuesday so that he could be well-rested and ready for a busy day. Our decision to head to London on the Tuesday night after a Year 6 meeting at his school slightly scuppered those plans and his night’s rest was then further disrupted by a 5am fire alarm in the hotel, something none of us appreciated. The further stress of the drive across London to make sure that we reached GOSH in time whilst being questioned constantly as to when we would arrive, tested my nerves thoroughly, though we did make it – by the skin of our teeth. The hurried unloading of G, M and me just around the corner so that we could dash to the main entrance by 10am as Mike went off to the park the car, was an unexpected drama I could really have done without.

However, the day itself was a huge success redevelopment-wed-14and we are still hearing snippets about it a week on. Whilst both children took over the same department, their mornings were filled with different activities to meet the interests they had already expressed in their completed profiles. M spent the morning with Development Director, Matthew Tulley, the highlights being exploring the roof of the hospital and learning more about CAD. That second activity earned the accolade that “CAD is rad!”, something I suspect will stick with the Development team for a long time. G headed in a different direction to learn more about different aspects of what this department does. She went with Deputy Director Stephanie Williamson and spent the morning planning and designing a new orthopaedic therapy space, which she really enjoyed, though it proved to be a challenge to fit all the requirements into the space available. She then headed to the kitchen to find out a little more about how patient meals are prepared, before meeting up with M and Matthew for their lunch. A big thank you has to be given at this point to Stephanie and the rest of the catering team who did a sterling job at providing safe meals for both children to enjoy. Both had been able to choose their menus before the day itself and the team had taken on board M’s request for either rice pudding or a rice krispy cake for pudding, which he was delighted to see.

After lunch, they both went to the Special Diets kitchen, where I’ve been told they met the 4 Simons who work there and M wondered if that was a prerequisite of working in the kitchens. I understand that the team was delighted to finally put a face to a name and actually meet a patient that they have had to cater for in the past. 15069048_10153959799661921_8246658330976253376_oThere was then enough time to head off to Coram Fields and chair a meeting about the new research centre being built and discuss the hoarding that will be used to surround the site. They even managed to find their way on to the building site, where M’s enthusiasm in particular has earned him the offer of a return visit to see the completed building in a couple of years’ time.

After our own day spent walking round London together, Mike and I met them back at the main reception where they were both clasping bits and pieces they had accumulated during their day in the job. It had been a fun day spent learning more about the hospital we have spent so much time in over the last few years and they thoroughly enjoyed every moment of their experience. We had a peaceful homeward journey after M’s gastro appointment, with M taking a nap as we headed out to Westfield for dinner and then both falling asleep as we travelled back home.

I can’t thank Steph, Matt and the rest of the Development and Property Services department enough for the time they took to spend with G and M and show them what goes into making a busy children’s hospital run. They both had an amazing day and are already talking about what department they might be able to take-over next year if they have the opportunity again.
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UnSATisfactory Pressure

Since the introduction of the National Curriculum to UK education in 1989 and the creation of the Standard Attainment Tests (SATs) in 1991, everybody has had an opinion about them and few are afraid to make that opinion known. For 25 years, controversy has raged about the value of these tests and who, in fact, the tests are really testing – is it the children or the schools? The one thing that is not in any doubt is that these tests put our children under a huge amount of pressure to perform well, even when their skills perhaps lie in a different direction and little allowance is made for those who find formal testing an unbearable strain.

Even though it’s been 2 years since G was in Year 6, I can well remember the stresses and strains that the prospect of the year-end SATs put on her. Small, but telling signs of the pressure she felt were revealed through changes in her behaviour at home and her already shaky confidence in her literacy ability took a further battering as she struggled to understand what the tests were demanding of her. Her homework steadily increased to ensure that all maths and literacy elements were taught, revised and well-established by the time the tests themselves actually happened and she spent Saturday mornings working with my 29Mum, a retired Year 6 teacher, to fine-tune those skills that were proving a little elusive to my school-loving child. Her hard work and focus throughout the year stood her in good stead and we were all proud of her year-end results, most of all because they rebuilt her belief in herself. Despite that previous experience, I knew that M’s start in Year 6 would herald a very different set of experiences and that’s absolutely proved to be the case.

M has been expressing his worries about the SATs since well before he even reached Year 6. He loves reading and his imagination and vocabulary are impressive, but the ongoing struggles with his handwriting and spelling due to his dyspraxia and dyslexia have really knocked his confidence when it comes to his literacy skills. This September saw the very real manifestation of the stress and pressure he’s put himself under and pieces of homework and classwork alike have left him in tears. I realised just how bad things had got when I received an email from his class teacher expressing her concern about his wobbles in the classroom. She knows him well, having been the school SENCo since he started at this school in Year 3 and also his Year 4 teacher when he had his NG-tube, so she’s fully aware of his additional educational needs and personality quirks and felt that his response was completely unlike him.

We have been working hard with M to develop the basic knowledge that is missing due to the delay in getting a diagnosis for his learning needs and are seeing a slow, but steady improvement. He attends weekly lessons at our local Dyslexia centre and his teacher there is working on his phonic and spelling knowledge in particular. We have agreed with school that he will only learn the spellings set by the Dyslexia centre as there is a greater need to ensure he has a good base on which to build his literacy skills, than worrying about the finer nuances of prefixes and suffixes for the time being. M uses the Nessy computer program, which was developed to teach reading, writing and spelling skills through a series of fun store_icon_nessyreading-01and interactive games and challenges. He has access to this both at home and at the Dyslexia centre and will soon be able to use it during some of his intervention group sessions at school. I have also just invested in the Nessy Fingers course, which will teach him to touch-type, a skill we are all agreed will be of huge benefit to him, especially when he moves on to secondary school next September. The ability to make notes on a laptop or tablet will ease some of the angst he already feels about the workload he will face in Year 7 and we are hoping to investigate some dictation programs that will also make his life just that little bit easier.

During Year 4, M’s occupational therapist came into school and taught a series of lessons focused on improving his handwriting and teaching him how to form his letters correctly. He now has the most beautiful joined up handwriting and, whilst it may take a lot of time and effort to do, he shows great determination to produce a well-written, well-structured and well-spelled piece of work. Even better, M recently received a certificate at school recognising his hard work with the diary entries he had been asked to write and congratulating him on some great ideas and marvellous handwriting. He was so incredibly proud of being awarded that certificate and his confidence and self-belief soared as a result. All too often over the last few years, M has been praised for his courage in dealing with his EGID diagnosis, NG-tube and food allergies, so it was great to see him receive recognition for the hard work he’s been putting in to improving his handwriting over the last 12 months.

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Truth be told, at the end of the day it really doesn’t matter what M’s SATs results are. They will not be a reflection of the bright, brave, cheerful boy that he is or of the huge strides he’s already made from an educational standpoint. They won’t show his breadth of knowledge on random topics such as the Illuminati, or expound his theories on anything Star Wars or his opinions about Brexit and the American Presidential race. They will never reveal the medical and health hurdles he’s overcome since the day he was born. Rather they will be a single snapshot of the ability of my 11 year-old to perform under certain pressures on a given day in May and will have no bearing on the journey he will eventually embark on for the rest of his life. They really are an unnecessary and unsatisfactory pressure that M and his friends could do without.

World Prematurity Day 2016

43a5b1be37a6689952d3a3113eaa551dI watched my preemies sleeping last night, curled up together in the back of the car as we travelled home from a long day in London; M with his head on G’s lap and her arm clasped firmly round him holding him close. The image was not too dissimilar to a photo we have from not long after M had been born – with my eldest baby cuddling her very new brother, a protective arm surrounding him then, just as now. They are fast growing up and there’s little left to remind us of their early arrivals in life.

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We were lucky; we are lucky that our premature babies have grown into determined young people, not letting their early starts stand in the way of anything. Some families are not so lucky.

Every year an estimated 15 million babies are born worldwide before 37 completed weeks gestation, with more than 60,000 of those being born in the UK. Premature birth is the leading cause of newborn deaths, the second biggest cause of death in children under 5 and can cause on-going health problems affecting the brain, lungs, hearing or vision. Premature birth takes an emotional toll on the family as they come to terms with a new reality and can cause huge financial strain as parents may have to give up work to spend time in hospital caring for their child.

Today is World Prematurity Day and I am the proud parent of 2 preemies.

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Eyes on Diabetes

jdrf-t1dfootprint2016 has marked 2 significant milestones in my life, both of them linked by 1 common factor: Type 1 Diabetes. Back in February I celebrated my 39th birthday and my 30th diaversary, something I can never ignore as they fall on the same date, but this year has also marked 18 years of living with a complication of that disease, diabetic retinopathy. As a rebellious and angry teen, I never anticipated that the years of refusing to accept and manage the illness that set me apart from my peers would ultimately result in near complete loss of sight in my left eye. Of course I knew that the risks were there, but I didn’t fully understand that the problems could, and in my case would arise when I finally stepped up and took control once again, determined to make T1D only a bit player in the story of my life. I now have to live with a permanent reminder of just how damaging this illness can be.

For those who don’t know, diabetic retinopathy is caused when the fluctuations in blood glucose levels cause changes in the blood vessels in the retina. New blood vessels may grow on the retina to improve the blood supply there and in turn, these weaker vessels can swell and burst leading to a detached retina or, in some cases, complete loss of sight. If the symptoms of this complication are identified early enough, careful monitoring of the eye can help reduce the need for further treatment and the risks of the problem spreading further. stages-of-diabetic-retinopathyFor those with already well-developed retinopathy, laser eye treatment can be given to prevent those new vessels growing further and reduce the chance of new vessels growing too.

Regular diabetic eye screening should be done on an annual basis and can be carried out at your local optician as long as they have the facilities and expertise to do so.The screening tests are not invasive as they simply require photographs to be taken of the retina and a thorough examination of your eye. In my case, a regular eye examination at my opticians  picked up the signs of retinopathy in my left eye and I was immediately referred on to our local eye hospital for further assessment. What happened over the next few days is still shrouded in something of a blur as consultants were summoned, examinations carried out and advice sought from Diabetes UK as to what my next step should be. The laser treatment I needed to stop the progress of the rogue vessels was done and that really should be where my story ends with lessons learned and an altogether wiser individual moving forward into the exciting new challenges of career choices, married life and parenthood.

Unfortunately, I was not so lucky.

I had the misfortune of being treated by an over-zealous medic, who wanted to ensure that the retinopathy was stopped well and truly in its tracks and that no further intervention was required. Instead of treating the eye with the recommended number of burns, a huge amount more was administered leading to the partial detachment of my left retina and leaving me with less than 5% vision in my left eye. blurred-eyechartThe 18 years since that fateful day have been filled with twice yearly eye examinations at our local eye hospital, regular eye checks, cataract surgery, prism lenses to reduce double vision and the resulting headaches, and the ever-present nagging fear that despite the continuing ability of my right eye to confound the experts by being startlingly healthy in comparison, things could change without warning at any moment. I am still able to drive, though my licence now has to be renewed every 3 years following a specific eye test to ensure that the loss of vision in my left eye won’t impact my ability to drive safely and I can still be independent in the things that I do. I have travelled, got married, had children and continue to build my career as an accountant and my eyesight hasn’t stopped me doing any of those things. My night vision is poor, my depth perception almost non-existent and my colour perception drives the rest of the family mad, but I am fortunate that I can still see.

I am one of the lucky ones in so many ways.

Back in 1991, the International Diabetes Federation (IDF) and World Health Organisation (WHO) created World Diabetes Day as a global opportunity to raise awareness of both types of Diabetes, the reality of living with this disease and the escalating health risks resulting from these conditions. That’s why I’m pleased that this year’s World Diabetes Day (#WDD2016), celebrated today on Sir Frederick Banting’s birthday, has taken “Eyes on Diabetes” as its theme, focusing on two key areas:

  • The importance of screening for early diagnosis of Type 2 diabetes; and
  • The treatment needed to reduce the risk of serious complications.

Statistics suggest that at least 25% of those diagnosed with both types of diabetes will suffer from diabetic retinopathy in their life, with some sources quoting figures as high as 90% of those who have been living with it for 20 years or more. These are statistics that can be reduced and I truly believe that education is key in making that difference. What I hadn’t understood was that a rapid improvement in blood glucose levels can lead to a worsening of retinopathy and my approach to improving my control should have been to do so gradually to ensure that my body had time to adapt. There are always lessons to be learned from the experiences of others and I just hope that my story can add to that education process.

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Lest we forget 2016

They shall grow not old, as we that are left grow old:
Age shall not weary them, nor the years condemn.
At the going down of the sun and in the morning
We will remember them.

– Robert Laurence Binyon

#Somme100 #wearehere #armisticeday #shroudsofthesomme

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Cafe Nouveau, Frome

cafeThere’s nothing better than finding a hidden treasure and this small cafe is an absolute gem. We were visiting friends who moved to Frome at the start of the summer and on recommendation from another friend, decided to try out Cafe Nouveau in Tytherington for our Saturday lunch. Long gone are the days of just dropping into a cafe or restaurant and hoping for a safe meal to feed both children, so about a week before our visit I wrote a quick email to the owner, Susan Green initially asking if it would be possible for us to bring a packed lunch for M to enjoy whilst the rest of us ordered from their menu. Much to my delight, Susan replied offering to prepare a cooked lunch for him based on his 5 safe foods and then impressed me further with some extra questions about which herbs and seasonings could be added to his meal to give a bit more flavour. This was already a meal that was sounding like a success and I couldn’t wait for our visit to see exactly how well it delivered.

img_12441I’ll be honest and say that we didn’t realise at first that the entire menu is gluten- and dairy-free, but as soon as we had established that fact, G was in her absolute element. I cannot adequately put into words her reaction when she realised that she could choose anything she fancied and soon settled on a prawn mayonnaise ciabatta with a small side salad and accompanied by her perennial favourite, a soya milk hot chocolate. When we placed our order for her drink, Susan reassured us that because G needed to be dairy-free, she would use dark chocolate powder to ensure the drink was completely safe for her. They had a fantastic range of alternative milks and milk-based drinks on the menu, including almond, coconut and soya milk as well as some cows’ milk for those customers who don’t want to try something different. We were told that the cows’ milk is kept separately and different containers used depending on the milk used. img_12451M was keen for G to try the “Vanilla Soya Frothy”, which I assume is a vanilla milkshake, but G was determined to indulge and stuck resolutely to what she knows she likes.

Mike and I both decided to take a look at their specials board, which is updated I believe on a daily basis and contained some delicious sounding dishes. I checked to make sure that their soup of the day didn’t contain potatoes and chose the chicken soup with a gluten-free roll on the side. Mike opted for their daily special of a spinach-filled chimichanga, which img_12461Susan mentioned was a fairly small portion and so added the Mezze plate, which included houmous, olives and some delicious seeded crackers. The plates, when they arrived, looked wonderful and the food was absolutely delicious. My soup had that real home-made feel to it, was packed with chicken and tantalisingly fragrant in its flavours. I was impressed with the gluten-free bread, which we were later told is baked off-site in a img_12431bakery that has an exclusively gluten-free area to make sure there is no cross-contamination risk. G’s sandwich soon disappeared and her hot chocolate didn’t last long either! As for M, he was thrilled to receive a healthy-sized portion of plain rice, topped with 2 roasted chicken thighs and some apple and ginger purée. He was a little disappointed that they didn’t stock any rice milk for him to drink, but was happy with the cartons of cloudy apple juice that were on offer instead. We were all delighted by our fantastic meals, little realising that the best was yet to come.

Anticipating that there wouldn’t be much on offer for M as a dessert, I had brought some safe snacks with us for him whilst the rest of us enjoyed a pudding. For the first time ever in her life, G had the chance to experience something that is commonplace for all her friends. She and I went to the counter, where an impressive array of cakes, cookies and other sweet treats were on display and she could eat every single one of them. That is a treat that is absolutely priceless and I loved seeing her struggle to pick just one item to enjoy after her lunch. There was chocolate cake, Victoria sponge, reduced sugar apple cake, flapjacks and some amazing-looking bite-size vanilla and nut ball treats. G finally settled on a toffee popcorn cookie, whilst I savoured a slice of the Victoria sponge.  Neither stayed around long enough for me to snap a photo, so I’m afraid you’ll just have to imagine how wonderful they looked. We were so impressed with the selection that M helped me choose a few to take with us for afternoon tea at our friends’ house and was particularly keen that the man of the house had the chance to taste the allergy-friendly chocolate and orange torte.

Cafe Nouveau really was a most remarkable find and one that the whole family would happily recommend to anyone eating out with food allergies. It is part of a very small development on the edge of 30 acres of parkland that also includes 4-star Bed and Breakfast, The Lighthouse. Susan and her team open the cafe from 7am to provide breakfast for The Lighthouse’s guests as well as other customers, something that I absolutely love as it would save the need to pack boxes of cereal and cartons of safe milk on our travels.

Our marks: 9.5/10

My name is…

14141873_10153684384151123_244385722473814537_nI have a confession to make. In the grand scheme of things, it’s no biggie and it certainly won’t come as any great surprise to my nearest and dearest, but I have to admit that…

my name is bluesingingdragon and I am something of a coffee shop addict.

Admittedly, I’m not yet at the stage of needing a daily fix of my favourite flavoured drink, but when the opportunity arises to partake, let’s face it, I’m not likely to say no. Days out often involve a quick game of “hunt the coffee shop for Mummy” whenever possible and travel breaks are carefully timed to match our approach to a service station housing either a Costa or Starbucks, depending on my current preference. Is it wrong to love that my kids know to order me a “decaf vanilla latte”? I don’t think so, especially when it has saved my drink on the odd occasion that Mike has forgotten one crucial element or another from my order.

img_12061My coffee shop of choice does change on a fairly regular basis, depending on the time of year and the flavoured drinks on offer. For the last couple of years, Starbucks has held the monopoly on my business from the end of September until Christmas, thanks to their Pumpkin Spice Lattes and Black Forest Hot Chocolates, which have unfailingly kept me going during M’s GOSH admissions. As for the rest of the year, well if I’m perfectly honest I’m fairly ambivalent to where my decaf comes from most of the time, but whenever G and I are having some much-needed girls time, Costa always wins hands down. Our recent trip to London for the last YPF meeting proved to be the perfect opportunity to try out a few of the free-from foods that Costa has to offer and we weren’t disappointed.

img_12511G always chooses a small soya hot chocolate* with marshmallows and loves nothing more than accompanying it with a gluten- and dairy-free cake. However, this time we were travelling late afternoon by train and I wanted to pick her up a light tea for the journey home. As well as the obligatory drink and cake, G also chose a gluten-free roll and packet of crisps to complete her meal. I was interested to find out just how much she enjoyed her sandwich and whether she’d be happy to eat it again. To be honest, G was a little uncertain about the sandwich as she’d picked a chicken salad roll and she wasn’t impressed that there was tomato in it too, img_12081but once I’d removed the offending item, she was happy to give it a go and ate the lot, telling me that it was surprisingly filling. The crisps rapidly disappeared as did the mini pecan pies that rounded off her supper beautifully.  All in all, G gave her meal 8/10, a decent score given the disappointing inclusion of tomatoes in her sandwich.

Much as I was delighted to be able to buy a complete light meal that was safe for G to enjoy, I was disappointed by the limited choice, which seemed to ignore what can be the simpler tastes of children. I know that G would have been much happier to have a plain ham roll, but the only sandwich available was the chicken salad roll and that had been challenging to find as it was hidden amongst the other sandwiches, wraps and paninis available in the fridge, something I’ve found to be true in every Costa I’ve visited in the last few months. Likewise, as fantastically delicious as the pecan pies are, they are the only safe cake available as the gluten-free chocolate brownie contains milk and their fruity flapjack contains oats. They did previously sell gluten- and dairy-free mini bakewell tarts, which were another huge hit with G, but those were discontinued and replaced by the pecan pies, something that G still grumbles about these days. I love that a mainstream, high street coffee shop is trying to cater for those with food allergies, but I think there’s still some work to be done to make this a really great elevenses or lunch-time option.

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*Costa states that milk is present in the manufacturing site/factory/supply chain of their soya hot chocolate and that there is a significant risk that this allergen could cross-contaminate the food. Do not choose this if you have a severe dairy-allergy.

From all angles

The last few months have been busy ones in all areas of our life, which I haven’t been shy in talking about, but the one aspect that I haven’t mentioned for quite some time is where we are health-wise with M’s EGID. You could view the reason for the radio silence as a good one – we haven’t really been making any significant progress and everyday continues to be a battle to see if we can reach and maintain some semblance of status quo for a decent length of time. I’ll be honest, since March things have been quite challenging as we have had little medical support and we have felt, at times, as if we’ve been cut loose and are paddling desperately to make some headway by ourselves. The reason for the missing input is that we are in the process of trying to build a shared care relationship between GOSH and our local hospital once again and at long last do appear to be making bmd6e7zcyaef7disome progress, albeit very slowly. We last saw M’s GOSH consultant in the middle of March, when it was somewhat reluctantly agreed by us that we would wait until November for his next GOSH appointment with the plan being that we would meet and then have an appointment with our local gastro team during the interim period.

It may well come as something of a surprise that we are even considering transferring some of M’s gastro care back to our local given the  numerous problems we’ve had in the past, but this time we were encouraged by the fact that his new gastro consultant is a registrar that we got to know whilst at GOSH and someone we trust implicitly when it comes to M and his health. Dr W, who has invited us and M to be on a first-name basis with him, was instrumental in getting M admitted 2 years ago when we made the decision to move to elemental feeding and so is someone who knows something of M’s background and understands where we, as his parents, stand when it comes to treating this disease. We are also keen to gain some local support for M because, when crisis hits, it is very difficult to get any immediate care from GOSH due to the distance we live from the hospital and the inability to just pop along there for them to review his current state of health. There is a standing agreement that we can phone and discuss him with any one of his consultant’s team, but sometimes that isn’t enough to resolve the issue as quickly as we all need. supportDr W had already agreed with GOSH that he was happy to meet with us and look at the potential possibility of taking over some of M’s care during last year’s disastrous admission and he understands that there is a trust issue between us and our local hospital that he and his team will need to work hard to re-establish – something that is so critical to M’s well-being.

With a little prodding, it didn’t take too long for Dr W to give me a call and then for an initial appointment to arrive on our doormat and Mike, M and I met with them in the middle of June. At this point, M’s broken leg had unleashed an unexpected level of havoc on his body and we were struggling to manage the ever-fluctuating bowel issues as well as his increasing reluctance to drink the E028 and huge disappointment that we couldn’t undertake any food trials whilst he was so unstable. The team was great, but it really was just a conversation about what we were looking for and what they felt they could do for us. A few interesting insights and suggestions about M’s diagnosis were thrown out, but there was no opportunity to ask questions about them and now, 3 months on, our reflections have left us wondering about what the next steps will be. What didn’t come as a surprise was the question mark over whether M is truly suffering from so many genuine food allergies or rather if there is an underlying problem with his gut and/or bowels which means that he is unable to tolerate so many foods at the moment. This has been a question that has been stumping his GOSH dietician too, who has freely admitted to finding M one of her most challenging patients ever and is hoping our local will provide a fresh pair of eyes when it comes to considering how best to treat him. Dr W also expressed a concern that 20150203_082342M would eventually stop drinking the E028 altogether and stressed that we need to find a viable alternative before we reach that point. This has proved to be remarkably insightful as it is now one of the biggest issues that we have had to contend with since that June appointment, with M struggling to drink even half of the required amount and with no new foods in his diet, there are growing concerns about both his weight and his nutritional intake.

Just before our Portuguese holiday, I contacted our GOSH dietician to discuss with her the lack of progress we’ve been making with M and asking for her input as to what we should do next. The email reply I had came as something of a concern as she explained she was under the impression that all care had been moved to our local hospital and she was surprised that I was looking to have a further conversation with her. I fired off a considered response, copying in both the GOSH and local consultants, advising that whilst we had met with the local gastro team in June, we had heard absolutely nothing since and really needed some medical advice once September started, although somewhat ironically we have had our next GOSH appointment booked – September 2017! Thankfully the strong relationship we have built up with this dietician since M first went to GOSH 5 years ago meant that S was happy to step in and gave me a call just a few days into September. She was as concerned as I was about the lack of medical care being given to M at the moment and during that lengthy phone conversation, worked with me to put a plan into place for food trials over the next 4-6 weeks. She also offered to chase both Dr W and our GOSH consultant to find out what was happening regarding the transfer of M’s care and try and speed up the process to ensure that M is seen before November if at all possible. I’m not quite sure what strings she pulled, but within a week of speaking to S, Mike received a phone-call from Dr W to tell him that a plan had been agreed between the two hospitals and an appointment would soon be forthcoming. Delighted to hear that a plan would soon be put in place, Mike asked whether we could be privy to the discussion they had had, so that we too were on board with whatever next steps they were expecting to make. Another lengthy conversation later and at long last, we finally had some idea of how M’s care will be handled until the end of the year at least.

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The most critical aspect of looking after M right now is that no-one really understands what is going on with his body, his bowels and gut in particular, and there doesn’t appear to be any logical explanation why we seem to be stuck at just 5 safe foods. Add to that the added complications of the massive downturn in his health that happened as a result of his broken leg and the resulting failure to find ourselves in as good a position as we were a year ago, the medics all agree that they are more than a little stumped. So, rather than rush into more tests or a radically changed approach to his treatment, our local gastro team have booked monthly appointments for the next 3 months, where they will be assessing and observing him without getting too involved in the medical decisions. Obviously any problems that we do encounter during that time will be addressed, they won’t leave M to suffer unnecessarily, but they are leaving us to work with GOSH in terms of his food challenges and medicine tweaks. They have also recognised the need for psychological support, not just for M, but for the whole family and are proposing that we start with weekly appointments, split into fortnightly appointments for M and the alternate weeks for Mike and me. We have long argued that the diagnosis of his EGID has a huge psychological and emotional impact on M and have frequently seen the outpouring of that in the home environment. The added stress of his SATs this year is already showing at both home and at school and so I am hopeful that with these regular sessions in place and the support of us and his teacher, we will ensure he makes his way through Year 6 relatively unscathed. With this kind of all-encompassing care in place and the availability of local support for any admissions or longer term treatment changes that might be needed, the strain on the family will hopefully be reduced a little too, although it will obviously never fully disappear. We don’t know what the future holds for M and that is the most daunting thing we have to face as a family. What is encouraging is that there is already an open dialogue between some of the many people involved in M’s day-to-day care and our hope is that can only prove to be the best thing for him.