Tag Archives: Education

Inside the Free From Food Awards 2016

I’m writing tonight’s post in the peace and quiet of the hotel room in North London that has been my home for the last 2 days. It feels a little surreal to be away from my sound proof bubble at home, where I desperately try to ignore the perpetual chaos of family life that swirls around me and I can’t quite get used to being able to write completely uninterrupted by demands for food or drink or the need to referee between any 2 of the other 3 members of my household. It’s no exaggeration to say I’ve been counting down to these days away for months and have had to work incredibly hard to not spill the beans about my involvement with this year’s Free From Food Awards, #FFFA16. I feel incredibly honoured to be included on the judging panel and have enjoyed every moment of this experience.

fffa For those of you who are not in the know, the #FFFA are the brainchild of Michelle Berriedale-Johnson and were launched in 2008 to celebrate excellence and encourage innovation within the free from food industry. Each year a group of judges from across the allergy and free from community are invited to taste a variety of new free from products and rate them on quality, usefulness, innovation and nutritional value. The foods are all tasted “blind” in the first instance, with names and packaging removed so that the products really are assessed on their own individual merits. Then follows an active discussion as each individual judge is asked to help reach a group consensus on the category winner and which other products deserve to be shortlisted, commended or given a highly commended award. Given the judges have a variety of backgrounds from free from food professionals to health professionals and from allergy sufferers to allergy bloggers as well as the occasional “normal” person to compare each item to their non-allergy counterpart, you really do get a rounded point of view about what makes the highest quality free from product. Believe me when I say that any manufacturer who wins a category is producing something that has impressed across the board.

This is what judging confectionery looked like!

I was keen to judge the Breakfast and Tea-time categories as I felt these were areas where it would be amazing to find some new foods to tempt G and was delighted to be included not just on those panels, but on those for Confectionery and Meaty & fishy ready meals too. The ready meals was a real added bonus for me as, whilst I cook from scratch 95% of the time, the option to have some good gluten- and dairy-free meals stowed in my freezer for those occasions when a quick meal is needed for G was incredibly attractive. The number of entries was overwhelming to a #FFFA16 newbie and I was extremely grateful to Ruth at What Allergy who had advised me to skip breakfast that first morning to ensure I had space for all the foods I’d be trying. With 36 breakfast products, 22 confectionery items, 32 meaty & fishy ready meals and 26 tea-time treats to taste over around 12 hours, no wonder I left London feeling extremely well fed.

Even better I found some great new-to-us foods that I thought G might like to try and these are my top picks from each category:

Breakfast: Nutribix – a great alternative to the well-known breakfast brand, Weetabix. These were MEWS-free, taste delicious and would definitely provide a hearty, healthy and filling breakfast. I particularly liked that they were so reminiscent of their wheat-filled counterpart, a cereal that G had loved when she was tiny in the days before we knew she needed to be gluten-free.

Confectionery: Eskal Chocolate Wafer Rolls – I have to be honest and say there was a whole host of amazing chocolates for this category, which left me in some of a chocolate-induced haze by the time we got to the end of the judging session. However, these wafer rolls were the stand-out product for me as they were light whilst still being indulgent, deliciously tasty and would make a great accompaniment to a bowl of ice-cream for that extra-special twist. The only downside is that they currently contain soya, especially as they are amazingly gluten-, dairy- and egg-free.

Meaty & Fishy Ready Meals: I can’t begin to tell you how impressed I was with the vast range of free from ready meals that we got to taste and, to my delight, this category produced 2 top picks for me. The first is one that G will love and that would have ticked so many boxes for M pre going elemental. Tesco is adding a gluten-, dairy-, egg- and soya-free scampi to their own brand Free from range, which I’m sure will prove to be a huge success with many allergy families. I’m so excited for it to hit our shelves in the next couple of months and can’t wait for G to try it. My other choice is something I know G won’t want to try, but it ticked so many boxes for me as it was tasty, free from and could be prepared in the microwave in less than 5 minutes, truly the quintessential ready meal. Better Than Rice Chicken Massaman Curry introduced konnyaku rice to me, which has a completely different texture to normal rice and I’m looking forward to trying it out with M. He might not be able to eat the rest of the dish, but with such a limited diet, this new rice will bring an interesting twist to mealtimes.

Teatime: By the time my fellow judges and I reached this final category in my judging timetable, I was definitely suffering from a little food fatigue. As M calculated for me when I got home, I had tried over 100 different free from offerings in my 2 days away and had enjoyed a good many of them. The teatime category was again filled with a delicious array of biscuits and cakes, but there was one product that for me stood head and shoulders above the rest: the amazing Borough 22 doughnuts. These were impressively gluten-, dairy-, egg- and soya-free and also vegan, but most definitely not flavour-free and were the biggest hit of my #FFFA16 experience. I know that doughnuts are one of those indulgences that so many allergy sufferers really miss and these will more than ably fill a definite gap in the market. Not only did I get to savour them, but even better, the #FFFA16 team offered me the remaining 6 doughnuts to take home for G and my girl has been delighted to receive this treat.

My thanks go to Michelle, Cressida and the rest of the team at the #FFFA16 for their welcome and commitment to encouraging development in the free from community. I loved every moment of my time as a judge and have met some great individuals who work in different aspects of the allergy world and were a lot of fun to work/eat/disagree with over the 2 days. The shortlist of contenders for the final awards will be published on February 10th and the winners announced at the awards ceremony in April. I can’t wait to see who won in each category and share some more of these innovative products with you.

Some of the amazing free from cakes

A pain scale for every season

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My last blog post about M’s interpretation of his pain and how important it is for his medical team to understand him sparked a series of interesting conversations both on-line and in real life about just how effective pain scales can be for those who suffer from chronic pain. So many shared their own experiences of how their children express their pain and adapt to a new “normal” based on what their average day looks like and the symptoms they assume to be something that everyone has because they’ve never learned any different. What was most fascinating was the array of ideas and examples of the different pain charts out there that were sent to me and I thought I’d share some of them with you:

G’s godmother shared this pain scale image with me and I love the wording that is attached to it as it sums up to a tee how M has described his levels of pain over the years. From the magical unicorn of no pain at all which happens occasionally, to the breaking point of inconsolable sobbing and unbearable pain that little can ease, I’ve seen M pass through every stage of this chart on all too regular a basis. I doubt the colours, images or facial expressions would appeal overly to him, but it helps to clearly explain how he copes to those who need to know.

A fellow FABED Mum sent me this one saying, “It’s the only one that’s ever worked – I think it’s because apart from the last face, they aren’t very emotional, so she is prepared to admit to them. There is a Lego one, but the emotions depicted on the faces is *extreme* – I think it’s more for a paediatric A&E type thing. So a kid with a normal pain/health experience would probably find it helpful, but the level of distress the pain correlates to isn’t much help for someone who has made this into their normal…I do think these pictorial pain scales are good – pointing is so much easier than talking, to start the process. R finds the words ‘annoying/uncomfortable/miserable/horrible’ very helpful and she even sometimes uses them without prompting.” The recent release of the latest “Peanuts” film will no doubt lend added appeal to this Charlie Brown themed scale.

This third one I discovered through Twitter and was posted up by @2tubies, whose 6-year old son helped make his own pain chart for the school environment with the help of the school SENCo and his Mum. They used Lego figurines to depict how he might be feeling and offered some easy solutions for his symptoms. This solution-based approach is one that I find works well with M and have started using it more and more over the years. I rarely give M the option of staying home from school when he’s feeling unwell, but will instead list out those solutions I think might ease not only his pain, but also the whirlwind of emotions that is so frequently tied into what he’s feeling on a physical level. Whilst he was still being tube-fed, I would always start with the offer to slow down or even stop his pump for a limited amount of time and then followed that up with pain relief or a hot water bottle. My final question has always been what M thinks will help him the most and given he has a clear idea of what I’m suggesting, then we have always been able to find a solution that works for us both. Whilst giving these choices verbally works well at home, I imagine that presenting them in a pictorial fashion would make great sense in the school setting.

Of course, the ideas behind these pain scales can easily be extended to cover other physical and emotional needs that our children may have when outside of the home. When G was younger and dealing with her own health challenges, one of her fantastic teachers introduced the concept of a “magic marble”. We had discussed the use of a password, a word that was random enough to not be misinterpreted as a genuine contribution to a conversation and which would indicate that G needed help, but she was at an age when she was reluctant to vocalise her needs and the use of “rhinoceros” actually stuck out like a sore thumb most of the time. Instead, G kept her marble somewhere safe and easily accessible at all times, be that her pocket, bag, drawer or table, and just needed to give it to her teacher or place it on the teacher’s desk to indicate she needed some support. No other child was aware of the significance behind this marble and consequently didn’t bat an eyelid if they spotted her handing it over, assuming that she’d probably just picked it up and was handing it in. It was an easy way for G to communicate her needs about a sensitive subject and gave her a sense of ownership over a situation that was otherwise lacking her control.

At G’s secondary school, they have included traffic light coloured pages in the back of the pupils’ planners and the children are encouraged to use them by putting the relevant colour facing up on the desk if they need some help during a lesson, but are too worried or nervous to ask. For some children, a “traffic lights” approach using counters or cards can also be effectively used to indicate how they are feeling in any given situation, where red can indicate their sense of losing control or not coping with the environment surrounding them. The opportunity to be tactile with the counters may also help children with sensory issues order their thoughts and be more able to express them when asked. Even if the child is not able to share what’s troubling them, a clear plan of how the teacher or adult in charge should respond to each colour will change that child’s perceptions and experiences away from home. Similarly, M’s school uses a “Fist to 5” approach to their work, where fist indicates a lack of understanding and the need for some help, and 5 means they are confident and happy to carry on on their own.

Whatever the system used, these scales encourage a child to communicate with the outside world about how they are feeling and coping, even when they don’t have the words to express it.

Reflections of an admission

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“I think we can all agree that this admission has been a complete disaster”

Mike and I could have been forgiven for expecting to see Craig Revel Horwood in the room, but in fact those were the opening words of M’s consultant at our meeting on day 13 of his admission. A meeting attended by on-call gastro consultants, ward registrars, dietician, nurses and the gastro psychologist and where not one of them disagreed. When those are the words you hear uttered by one of the senior gastro consultants at Great Ormond Street Hospital, you know that things have gone really badly wrong. To say that Mike and I were surprised to hear them offered as the opening gambit is an understatement: we had gone into this meeting prepared for battle, expecting to have to defend our opinion that M’s current deterioration was due to the food challenges, that same discussion I’d been having for the previous 10 days with that same multitude of medics, and without warning they appeared to have come round to our way of thinking.

Since M’s discharge, lots of people have asked about the admission and what happened whilst we were in London. The plan for the original 2-week admission was to trial 4 foods whilst we were there – potato and egg, which we hadn’t done at home – and banana and salmon, which we had, but he had failed previously. The original expectations as discussed and agreed with both his consultant and dietician were that he’d start to show a reaction within 48 hours of starting each food and so the admission was to look like this: 3 days observation to understand his “normal”, 8 days of food challenges – a new food every 2 days whilst continuing with the previous ones – and then 3 days to assess before sending him home. This approach of challenging with 4 foods in 10 days was ambitious to say the least and left no wriggle room for recovery if he failed at any point. Given we are used to spending at least 5 days slowly introducing a new food to M and then expect to take a week, if not longer, to get back to normal, it quickly becomes evident why things didn’t go according to plan.

3 days observation – these happened, but they hadn’t allowed for just how upset M would be by the short-notice of his admission. As I had packed our case having picked him up from school, I could hear him sobbing in the other room and discovered him lying on G’s bed, wrapped in her arms as he cried about missing her birthday and being away from home in the lead up to Christmas. This traumatised him so much that, as for so many people even without gastro issues, his tummy/bowels/digestion were upset and didn’t behave as the “normal” we’d got used to over the last 12 months. This was to later prove a problem as the ward doctors insisted he was constipated on admission and struggled to accept that these new foods were in fact the issue.

8 days of food challenges – we started with potato at a speed and quantity that I just couldn’t comprehend. There was no go-slow and gently increasing his intake here, instead he was allowed to eat “as much as he wants” and after 2 years without potato, believe me he went at it with gusto, even eating 6 roast potatoes at one sitting. Within the first 24 hours he started to show reactions to the potato – severe reflux, tummy aches, a constant need to wee and he started to soil again, something he really struggled with on an emotional level. The ward doctors refused to believe he could be reacting so quickly and their repeated mantra to me soon became “it’ll take 4-6 weeks for him to show a reaction” and “he just needs to push through this“. As each food was introduced, things got worse and worse as he was now completely incontinent, a position we hadn’t found ourselves in for a year. All the signs of his bowel starting to shut down were there as he was weeing for Britain, his appetite was dropping off and his energy levels started to wane and I kept saying that these indicated he was failing the foods, only to be told that it wasn’t possible. They were palpating his tummy twice a day and insistent it felt fine and every conversation ended with “it’ll take 4-6 weeks..yada yada yada…” – by now you get the picture! By day 8, they finally agreed to x-ray and, lo and behold, he was chronically impacted. This x-ray was apparently one of the clearest they’ve ever seen showing it – solid black throughout his colon due to the blockage.

Then came the heated discussions about why this had happened. They were insistent that he must have come into hospital constipated, though how a child who goes every day can be constipated they’ve still to satisfactorily explain to me, and I was equally insistent that he wasn’t. We ended up agreeing to disagree as neither of us could prove it either way, though it has now been noted that should M be admitted again, they will x-ray at the start of the process to make sure we all know the state of his bowel.

3 days assess/discharge – became 6 days of powerful bowel prep continuously via M’s NG-tube plus additional senna for the last 3 of those as things simply weren’t shifting as hoped. I have honestly never seen him so ill as he was by the end of that week – bent double from the cramps, crying, refusing to move from bed or engage with anyone, lethargic and rating his pain at an 11 or 12. Throughout this time he was expected to continue all 4 foods, just in case his obvious bowel reactions were actually nothing to do with the challenges and they had introduced a daily dose of senna to keep things moving, something we hadn’t needed at all during the 12-months being tube-fed.

We finally came home after a further 5 days of “recovery” time in hospital and decided to stop banana and salmon straight away as well as the daily laxative. Things slowly started to improve and we made the decision to allow him to have egg and potato in small amounts for a few more days over Christmas. However, since the 27th we’ve stopped those too and gone back to just his 5 safe foods – and he has recovered amazingly. No tummy aches or pains, as much energy as we’re used to, back to regularly using the toilet with no issues and much, much happier in himself. The medics would no doubt argue that it’s difficult to pinpoint when things started going wrong, but to me it seems obvious: the introduction of these 4 foods is undoubtedly the root cause of his bowel problems in GOSH.

That’s the truth behind our December admission and yet to many I’ve no doubt it will seem that it all went incredibly well. You see, the one thing that was achieved during our stay was that M’s NG-tube was removed and my little superstar has proved us all wrong by accepting the challenge of drinking his feed head-on and is drinking a much-reduced volume on a daily basis. M’s consultant was very determined to get the NG-tube out and at times it felt to us that it was her sole focus for the duration of the admission, which was difficult to cope with when we were needing and hoping for so much more. Achieving that has been amazing, but he hasn’t suddenly started eating a “normal” diet, in fact he’s exactly where he was before we went in, and the need for the elemental feed (E028) is still very much there. The flip-side of losing the tube is that M’s EGID, multiple food allergies and limited diet whilst not diminishing in any respect, have once again become hidden, a set of invisible illnesses, and we have all had to adapt our expectations by keeping that knowledge firmly in the front of our minds. That single small step forward simply does not cancel out the many massive steps backwards that happened whilst we were in hospital and doesn’t acknowledge the harsh reality that very little else in his life has actually changed.

Another year over

Children In Need 2015

Station X

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date (2) It might have been a damp, chilly October morning when we left home, but we didn’t let the weather deter us from completing our “top-secret” mission for the end of half-term – a visit to Station X, otherwise known as Bletchley Park. The purpose of our weekend away was actually to visit one of my Godmothers in nearby Milton Keynes, but the opportunity to take the children to see the home of unparalleled code-breaking during WWII was too good to miss. It was something of a last-minute plan, but I was confident that M would be fascinated by the history of code-breakers and spies that is so intricately woven into this beautiful Manor House and, what’s more, 20151031_115918 it fitted wonderfully well with some of the English home-work G had been set over half-term.

From the moment we drove in through the front gates, the children’s interest was piqued as we were questioned at the gate as to the reason for our visit and directed to the nearby car park. Members of staff were on hand to make sure we headed to the entrance and didn’t wander into any areas that are still in use today and not accessible to the general public. We started by picking up our multimedia tour packs, before heading into the grounds of Bletchley Park itself. M was keen to follow the guide exactly and so we started by the lake whilst listening to an introduction to all there was to see there, which believe me, is a lot. Once we had circumnavigated the lake, we were then taken around the rest of the site: starting at the Manor House, around to the garages and cottages, via the memorial to the Polish men and women involved in code-breaking during WWII and on to the restored Huts; 20151031_130649 all before ending up at the Block B Museum.

The Multimedia guide was absolutely brilliant and I’m really glad we stopped to pick them up despite G’s initial reluctance. Mike, M and I all chose the adult version, whilst G opted for the family friendly one. The map showed the key places for starting the audio recordings and you could then choose how many additional subject areas you wanted to listen to on a variety of different topics. The screens were all interactive and M had great fun “wiping off” the current images to reveal how each location would have looked during the 1940s. G had the added bonus of interactive puzzles to complete and loved working out how to break each code. The guides were included in the price of the entrance ticket and whilst they weren’t integral to our visit, they certainly revealed more of the story than was on display,

I would be hard-pressed to state which was my favourite part or indeed choose which I think the children enjoyed the most. There was just so much to see, so much to read and almost too much to absorb. From the history of Bletchley Park which led to its use during WWII, to the interactive displays of the Bombe machines in Hut 11, the Enigma machines on display in Block B and the children’s corner with puzzles and dressing up supplies, as well as an extensive area showing some of the props and costumes used to 20151031_125114 film last year’s blockbuster, “The Imitation Game“, there really was something for everyone. Sadly our few hours there simply weren’t long enough and we didn’t manage to explore either the National Radio Centre or the National Museum of Computing and its rebuild of Colossus, both located at the same site. No need to worry however, as it simply means that we will have to try to squeeze a revisit in and, as our entrance tickets give us admission for a full year, I’m sure we’ll manage it one way or another

Teal Pumpkin Project™ 2015

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My first real experience of Halloween came during my time as a student at Ottawa University back in the 1990s, when my Canadian friends took pity on a poor uninitiated Brit and introduced me to what is truly an unmissable event on the North American calendar. Every shop has a vast array of costumes to choose from, porches are adorned with carved pumpkins galore, houses are bedecked in lights and decorations to rival those put up for Christmas and entire neighbourhoods take to the streets on the night itself, pillowcases in hand, to offer the traditional “..trick-or-treat..” to the eager participants. Likewise, G and M have fond memories of their own P1000386 Canadian Halloween experiences with cousins and friends and their outfits are still hanging up in M’s costume wardrobe as a permanent memento. It was, understandably, a big part of Mike’s childhood, but is not an occasion I ever remember marking in my own upbringing and at home, here in the UK, I can’t quite reconcile myself to the idea of sending my children out in their ghoulish fancy dress to knock on random houses in our village to ask for treats, when, for the other 364 days of the year, I’m drilling into them the mantra to not accept sweets from strangers. Whilst we might not be avid Halloween fans in our household, I know it is a custom that is becoming more and more popular around the country.

Of course, for children with food allergies, trick-or-treating takes on a whole new meaning as frighteningly they risk their health by collecting sweets that could unwittingly trigger an allergic reaction. This year in particular, I am glad that my children have no expectations of going out on Halloween as with M’s slim pickings when it comes to safe foods, I would have to take away every single sweet he was given and swap it for a M-friendly alternative; and would have to do exactly the same to protect G from her allergies too. However, thanks to Food Allergy Research & Education (FARE) in the USA, a relatively new campaign helps raise awareness of food allergies during Halloween season, seeks to ease parental concerns, promotes inclusion of all trick-or-treaters and asks households to pledge to participate in the Teal Pumpkin Project™. teal-pumpkin-project-allergy-friendly-Halloween

This national campaign was launched in 2014 and saw households from 50 states and 7 countries get involved in the Teal Pumpkin Project™ and FARE is hoping that this year an even bigger movement will happen with a target 100,000 households pledging to take part. The idea is simple and incredibly effective: if a household is prepared to provide non-food treats for any trick-or-treaters likely to call, they are asked to paint a pumpkin teal and place it in pride of place in front of their home. Their website also has a free printable sign to indicate there are non-food treats available, which can be downloaded here. Even though this initiative was originally launched in the USA, the project has gone viral through the various social media platforms and allergy parents around the globe are making the pledge for this October 31st.

So, what can you do to be involved? It’s easy, it really, really is and if you’re planning to actively celebrate Halloween this year, I would ask you to please consider taking part:

Don’t just buy sweets to hand out from your door, but take a little time to consider those who can’t enjoy these treats and buy some non-food treats for them too. The treats don’t have to be expensive: trading cards, stickers, glowsticks or stationery will all be gratefully received, so visit your local pound or dollar store and see what your money can buy
Once you have your non-food treats, paint your pumpkin teal and put it out where it can be seen. There will be many who won’t understand the significance, but trust me when I say almost every allergy parent will know and will appreciate your effort
Visit the FARE website and print out one of their posters or signs to put up in your windows to make it clear you’re taking part in this year’s Teal Pumpkin Project™
Take the pledge via the FARE website and encourage your family and friends to do the same

And remember, your involvement could make a big difference and ultimately save the life of a child like M.

It takes a village

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Do you know that quote? There’s a chance you might associate it with American presidential hopeful, Hillary Clinton and her 1996 book of the same title, but in fact it comes from an Igbo and Yoruba (Nigeria) proverb and has a sentiment that is echoed by numerous other African sayings. It recognises the great value of having community involvement in a child’s upbringing, not just for the child and immediate family, but for the extended family and local community too. As I have mentioned so many times before, we are incredibly fortunate to have an amazing community surrounding us, who are unbelievably supportive, and none more so than our fantastic village school.

Since day one, when G first headed in through their gates, we knew that this was a place that would offer our children not just a great education, but also a safe and secure place to grow and develop, all within walking distance of our home. The children have had the opportunity to build strong friendships with others living nearby that will hopefully continue into their teenage years and beyond. In the 2 years that M has been there, we’ve seen time and time again just how invaluable the school community is, not just to M, but to G and to Mike and me too. The impact of M’s ever-changing health has been particularly profound in the last couple of years and there is no doubt in my mind that the unfailing support of their school has been a steadying force for us all.

Without the readiness of the Head and other key members of staff to accommodate M and all his needs, we would have struggled to keep his education a priority this year and I doubt I would have been able to continue working. Their willingness to have M in school as normal and to learn the intricacies of his NG-tube and feeding regime has allowed me to stay in my job, confident in the fact that this is a group of people dedicated to including M in every planned activity and who have taken on that intense in loco parentis responsibility without a second thought. This year in particular has tested their mettle with the demands of not just feeding tubes and complex allergy requirements, but of occupational therapy, dyspraxia and dyslexia added to the mix too. His teacher, Mrs M, has been amazing and she approaches every new challenge with great positivity and an unparalleled sense of humour. Even the minor hiccups encountered along the way – non-stop beeping, blocked tubes, leaking pumps and soaking wet clothes to name but a few – haven’t derailed her and that attitude has helped M cope remarkably well with all the changes this year has thrown at him. I cannot thank her enough for being the rock that M has needed during school hours.

Equally, Miss K, G’s lovely Year 6 teacher has been a real blessing to us as a family and to G in particular. She has encouraged G every step of the way and helped build her confidence throughout the year. M’s hospital stay in December was difficult for G as he and I disappeared off to London for 2 weeks and couldn’t be around to help celebrate her 11th birthday or enjoy the end of term build-up to Christmas. What made a big difference was Miss K, who was fully aware of all that was going on, made herself available to G whenever necessary, understood that emotions were high and made allowances when needed, and stayed in regular e-mail contact with me during our stay and also during the Christmas holidays, so she was as prepared for where things stood with M as the rest of us. She is moving on from the school at the end of this term and I, for one, will miss her, especially as I was hoping she would be M’s teacher for his Year 6 year.

It’s not just the teaching staff who have done their utmost to give us the support we depend on, but the parents and children too and this past week I was left speechless by the thoughtfulness and compassion of M’s class. Following his presentation during EGID awareness week, this group of enthusiastic 9 year-olds discussed different ways they could support him and focused their attention on the fact that he has to wear a backpack all morning, which contains his pump and his “food”. This is what happened next:

“We decided, as a class, that we would all wear a backpack for a morning so that we are able to understand a little of what M has to go through each day. Therefore, on Friday 10th July, it would be great if all of 4M could wear their backpack to school and keep it on for the whole morning! If you can make it weigh about 2 and a half kilograms that will be amazing as that is the weight that M carries around each day.”

On Friday I had the privilege of going into school to see this amazing group plus teacher and teaching assistants with their backpacks on and to express my thanks, not just to the children, but to Mrs M and the school for encouraging and allowing them to show their support in this tangible way. His classmates have adapted well to M’s tube and accept it as an essential part of him. They’ve asked questions and been interested in the whys and wherefores about it and then just forgotten all about it and carried on with day-to-day life, which is exactly what M has needed.

There have also been shows of support from parents, including one from a Mum I’d never met before and doubt I’d recognise again. We were travelling back home late from our last GOSH appointment after a long, hot day in London and arrived back at our local train station. As we reached the stairs of the railway bridge, I became aware of a fellow passenger catching up with us and smiled with her as she chuckled at the inane chatterings of my night-owl. I paused to let her go past, but she slowed her pace to match mine and started an unexpected conversation:

“I just wanted to tell you that my children are at the same school as your son and came home and told us all about his presentation. They both raved about how amazing it was and how much they had learned from watching it and asking him questions. I just wanted to tell you how impressed they both were, especially as they now understand a little more of what he’s having to cope with and we all think he’s incredibly brave.”

The conversation carried on until we reached our cars and said a quiet good-night. This for me is the advantage of having not just a child who stands out from the crowd because of his tube, but also a community who is brave enough to have the confidence to speak out words of encouragement to a near-stranger because of a shared experience and the desire to add their voice to offer support.

From helping take G to school early in the morning to having my tubie home for tea; and from working hard with M to improve his handwriting to encouraging G to reach her potential and aim for the stars, our school, its outstanding teachers and the families who go there have helped us out along the way. This academic year has been a tough one, but we’ve survived all the bumps in the road with the loving support of the truly exceptional community that we live in.

Year 6 Camp, here G comes!

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This weekend has been a busy one, perhaps busier than expected for me given that Mike and the kids have been away on their “Dads and kids” camping trip. Instead of taking time to spoil myself in peace whilst they enjoyed the glorious sunshine and camp activities, I sorted, washed, shopped and ticked things off a list, all in preparation for G’s Year 6 camp next week. She’s there for 4 days of adventure: from archery to rock climbing and caving to kayaking, and it’s promising to be an adrenalin-filled time away from home. It will be the first time she’s stayed away for any length of time, apart from during school holidays with my Mum, and I know she’s been feeling a little apprehensive about it all. The strain of not knowing in advance who she’d be sharing a room with took a bit of the shine off her excitement and she was anxious to confirm that she could opt out of the caving, the one activity she has said she doesn’t want to do since we first heard about camp back at the start of the year.

The one part of her week away that has not been of concern for her has been the one that I’ve been able to contribute to: her food. I’ve met with her teacher, Miss K, and the Head throughout the year to discuss the catering arrangements at camp and had an unprecedented 3 meetings the week after half-term as well as multiple e-mail exchanges to ensure the final plans were watertight. Miss K spoke to the camp cook to discuss G’s dietary needs and was reassured that they are well-used to catering for children with food allergies. We had talked about the types of food that would need to be considered for G – GF bread (Genius brown), DF spread (Vitalite Dairy-free) and DF milk (Rice dream) amongst others – and armed with brand names, Miss K has been able to confirm with the camp that these will be available for G.

I am confident that breakfast and lunch will be okay, but it is still the dinner arrangements that are causing me mild moments of suppressed panic. If G was “just” gluten-free, I’d have fewer concerns; if she was “just” dairy-free, I’d be only mildly worried, but the combination of both, whilst so much easier to manage that the multitude of allergies of others in our household, requires a little more forethought. When discussing the menu with Miss K, I realised just how much planning is needed to make G’s meals safe, something that probably seems strikingly obvious to everyone else, but is so second nature to me that I’ve had to learn how to effectively micro-manage these finer details. It’s not as simple as ensuring that GF pasta is cooked for lasagne or GF sausages provided for sausages and mash as she can’t have cheese or white sauce, mashed potato needs to be made with both DF milk and butter and there’s the hidden use of flour to thicken sauces. Those are the little things that sometimes slip under the radar.

So, the school and I have reached a sensible arrangement. I am providing some safe foods for the week for G for those “just in case” moments – cartons of rice milk, safe drinking chocolate, GF breakfast cereal and a loaf of GF bread. There will also be a packet of GF pasta and a GF/DF curry sauce tucked in that will take up little space, but will give me some invaluable peace of mind. I’m also packing a special camp “swap box” as an alternative to the lure of the vending machines that her friends will undoubtedly be pillaging at all times of the day and night. In there will be safe biscuits, snacks and a few bars of our ever-favourite Moo-free chocolate to ensure that she has the opportunity to gorge herself at midnight alongside her room-mates.

Today I handed over that precious bag of food and, tomorrow morning, as M and I wave her off on her adventures, I know that she’ll enjoy a mostly worry-free fantastic week away with her friends and my concerns need only be small.

Another food and an unexpected insight

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This moment has been an awfully long time coming, over 4 months and 7 food fails in a row in fact, but finally we have a fourth safe food to add to M’s repertoire: apple. The last few months have been emotionally tiring as we’ve worked our way down the list of food challenges agreed with our dietitian and M has systematically, and sometimes dramatically, failed each and every one. It has felt as if that elusive fourth food was our personal Holy Grail and there were times when Mike and I both began to wonder when we would ever achieve it.

One of the complicating factors we’ve had to deal with during the food challenges has been the whole host of reactions that we’ve seen along the way. We were never told, as far as either of us can remember, that it was possible to see so many different allergic responses to the varying foods M was trialling and we were certainly not advised that he could experience some that he’d never had before. His severe oral reaction to sweet potato was, in many ways, the easiest one to identify, even though horrendous to see happen, as we knew immediately that it had to be an instant fail; but the others have not necessarily been so straight-forward.

Our main goal is to maintain the improved health and toileting that M has achieved since he first went elemental back in December and even though that has meant ruling out some foods that would have been great to have back in his diet, I remain firm that his well-being, both physical and psychological, is our primary concern. At our last appointment, we discussed with both M’s consultant and dietitian our approach to the food challenges and agreed that anything that causes a loss of bowel control, of any description, has to be considered an instant fail for the time-being. These foods are not ruled out permanently – well, sweet potato is as far as I’m concerned! – and we will, without a doubt, revisit them at some future point once we have more safe ones back.

Sadly he has reacted to some of his old favourites, but he has coped admirably well with accepting the outcomes. He still remains reluctant at times to acknowledge exactly how he is feeling and telling us about the aches and pains we know he must be experiencing, but 9 years of parenting M means that I have become highly attuned to his moods and can sense when he’s feeling under the weather. His willingness to lose a food again at times has indicated to us that he also identifies when it’s making him feel poorly, especially when he has been prepared to fight for those that he believes he can cope with.

Never was that so true as at the start of our apple challenge. During the first couple of days, his body reacted with hives and itchy skin, just as we saw when we first reintroduced rice and he also struggled a little with his bowel control. However, unlike with other foods where he has reluctantly agreed that it was likely a negative response to the challenge, this time round M insisted that the fault was his for not listening to his body and responding quickly enough and that he felt he was still in complete control.

10 days on and he has proved to be right, which is a valuable lesson for us all:

We have spent years fighting for our voice to be heard when it has come to M’s health and each step of the way have been shown to be right in our concerns and our thoughts for his ongoing treatment. It seems that now we need to start listening to what M has to say too and take into consideration his opinions and insights about his body. Of course, at 9 he is nowhere near old enough or responsible enough to make his own choices or sway our decisions unduly, but, just as I have spent a long time arguing my place as the expert on the subject of M because I’m his Mum, now as Mum I need to encourage him to be his own best advocate and take an active and involved role in his care. After all, that’s a key part of my parental role.

And whilst I ruminate on this latest insight into M’s development, I’m eagerly gathering ideas and recipes to incorporate apple, in all its glory, into his diet. So far, we’ve ventured little further than apple juice, apple slices and apple pancakes, but with the help of good friends, including one whose son is just a few steps further down the food challenge road than M, and great resources such as The Recipe Resource, then apple crumble, apple crisps and apple cakes are all on our horizon.

7 years to diagnosis

Searching for an answer