Tag Archives: EGID

The Start of a New School Year

In barely the blink of an eye, the summer holidays have disappeared amidst a blur of activities, work and holidays and as we say hello to October and the occasional pumpkin spice latte, we’ve already put the first month of the new school year behind us. This year September has been a little different to most with G moving up to her secondary school and M heading into Year 5 and all the new responsibilities that have accompanied both those events. It’s been a month of mixed emotions as the realisation that my babies are no longer that has hit. They’re growing up fast and whilst it’s been wonderful to see them stepping out with a new-found confidence, there’s been the inevitable tug on my heartstrings as I’ve realised that we’ve moved on to the next stage of parenting, especially when it comes to our little Miss.

For G, she seems to has quite literally grown up over the summer holidays and now stands a good 2 inches or so taller than her closest friend, whilst developing a new sense of independence too. Every morning I drop her at the local corner shop, where she meets up with a couple of friends for the walk to school. They leave laughing and chatting and seem to pick up various classmates and friends along the way. She’s loving all that her secondary school has to offer, even the drip-feed of homework on a regular basis and is fast learning the importance of being organised and keeping track of her things when there’s no peg or drawer in which to abandon her belongings. Every afternoon she meets M and me at our agreed meeting place, strategically positioned between the 2 schools and is keen to find out how M’s day has been as well as sharing parts of her own.

And every evening, once she’s tackled her homework and played outside with M, G spends time helping prepare her packed lunch for the next day and chats away with either Mike or me in the kitchen, giving us precious insights into how things are going as we prepare M’s feed or dinner or sometimes both. Some evenings she’s tired and emotional and a little worn down by the events and demands of the day, but on others she’s buzzing with excitement about what she has learned and the things she has done. I’m so proud that she’s choosing to tackle some of the extended assignments she’s been given in class and her latest effort, to write about why she’d like to have lunch with author, Huw Powell, reaped a much-deserved reward at the start of the week when she and 5 other pupils were selected to actually have lunch with the author himself. It’s wonderful to see her blossom so much in her new environment and I can’t wait to see what the year ahead has in store for her.

M has similarly settled well into his new class and is enjoying being back at school, although he’s not such a fan of the increased homework load that Year 5 has brought with it. He struggled on his first day back, sorely missing G’s reassuring presence at the Junior school with him, but he has soon got used to the new reality and looks forward to meeting up with her every day after school. Despite the hopes and original plans of our gastro team at GOSH, M’s NG-tube is still in place and seems likely to be so for the foreseeable future. His friends continue to take it fully in their stride and are happy to help him remember to bring his feeding pump home at the end of each day, something he still struggles to do even after 9 months of having it in place. We’re not 100% sure of all the challenges that this next school year will bring for M in terms of his health, but we know without doubt that there will be some and are glad to still have our wonderful school and staff supporting him each step of the way.

Afternoon tea at the Celtic Manor

1 Reply

At the end of last year, not long after M had been discharged from GOSH, my Aunt celebrated a milestone birthday and my Mum started talking about a trip to the Celtic Manor in Newport for a celebratory afternoon tea. Fast forward 9 months that have taken us even closer to her next birthday than the one we were actually celebrating and with Mike organised at home to do the school-run and sort the children for the day, the three of us finally managed to become “ladies who lunch” as planned. We booked a table for their Autumn Afternoon Tea at 2pm and arrived a little earlier* (*for little, read 1 hour) than necessary due to my Mum’s anxiety of being caught up in the Rugby World Cup traffic and the pressing need to arrive early, no matter where we’re going.

We spent the first 20 minutes wandering the grounds and browsing in the shops before kicking our celebrations off with a glass of prosecco and a chat until it was eventually time to venture a little further to the Olive Tree Garden Room. As a family we are now well-versed in the world of disability and additional needs due to not just EGID and multiple food allergies, but also the presence of T1D, Parkinson’s Disease and Multiple Sclerosis amongst our members. Everywhere we go is assessed on their ability to cater for all these needs and I’m sorry to say that here the Celtic Manor failed at the very first hurdle. The Olive Tree Garden Room is a stunning place to relax and enjoy the treat of an afternoon tea, but from every approach it is only accessible by steps and whilst a portable ramp is available, the staff were slow to offer help when it was so obviously needed.

These things aside, we made it to our table in one piece and couldn’t wait to get started on the tempting and extensive menu that formed our afternoon tea. The meal began with a glass of warm Winter Pimm’s – delicious – and the Harvest hamper filled with 4 bite-size savoury treats that tantalised our taste-buds and gave us an inkling to what to expect for the rest of the meal. The detailed menu impressively showed the allergens present in each of the different items on offer and I was pleased to see that gluten-free alternatives were available. On this occasion, we didn’t test their allergy offerings, a real treat for me, but I’d be keen to return to see whether they could cater for G with her gluten- and dairy-free needs and if they favourably compare to the “normal” dishes. The sandwiches that followed were equally good and sized perfectly so that we could manage the cakes that came next.

The cakes were a sight to behold and it was really difficult to decide exactly where to start before trying each and every one. It was at this point that we all were finally beaten – well 5 cakes and pastries, however mini, is an awful lot for one person – but the Celtic Manor is obviously well-used to this experience and were able to offer us cake boxes to transport those extra ones home to enjoy at a later time. I cheerfully packed my remaining 2 away and eagerly looked forward to the final part of our tea, the scone. After all the other mouthwatering courses, I couldn’t wait to taste the scone with jam and clotted cream, which has to be the best bit of any cream tea in my opinion and I was confident that this one could be nothing short of exceptional.

Sadly I was very wrong and we were massively disappointed with the freshly baked Cherry Bakewell scones that arrived. The scones appeared to be so freshly baked that they were, in fact, under-done and tasted stodgy and sticky in the mouth. The Cherry Bakewell embellishment was a complete step too far and did nothing to add to the taste experience as it consisted purely of a sticky cherry syrup thinly spread across the top and a few flaked almonds added for effect. I struggled to eat it and gave up half-way through as it really wasn’t edible. To make matters worse, our disappointment with the scones was compounded by the poor quality of the tea served with the meal. I’m not sure who had trained whoever made the tea, but my Mum’s Earl Grey was the colour of a strong builder’s tea when poured and even our request for a second pot and then a pot of boiling water, did little to improve the flavour. In comparison, the coffee I had was fantastic and my Aunt much preferred the coffee to her original and fairly unpalatable English Breakfast tea.

I would love to be able to say that my review ends there, but I just can’t. Scones and tea aside, even though they’re fairly integral parts of any afternoon tea, the rest of the food was delightful and we really enjoyed everything else we had to eat; but – don’t pretend you didn’t sense there was a “but” coming – the service we received just didn’t match our expectations of the Celtic Manor. The staff members were not overly attentive and I found myself almost constantly having to grab someone’s attention each time we needed anything, however small. They forgot to take our orders for tea and coffee and excused this surprising fail by blaming it on the “..very busy room..”, even though it was never more than 1/3 to 1/2 full during our visit. I flagged down our requested additional pot of hot water when it was delivered to the next door table, helped myself to extra knives from an empty table behind us when our clean cutlery ran out and even ended up asking the staff to clear our table of empty glasses and dishes to allow space for the cake stands, teapots and cups and saucers still to come.

The last straw really came when I asked for a clean cup for my Mum after her second pot of Earl Grey was delivered to the table and the waitress reached over and removed her cup. Just. her. cup. Not the saucer, not the spoon and certainly not all 3 items together, but the cup on its own and swapped it for a clean one, still swinging the old cup with its remnants of tea sloshing around it from her other hand!

Let me be clear: in no way did this spoil our enjoyment of the afternoon at all and in fact it gave the three of us a fit of the giggles, much to the bemusement of our unsuspecting waitress. We loved our table, even though it was tucked away in a far corner, as it gave us an uninterrupted view of the rest of the room and we all enjoy participating in a spot of people-watching whenever we can. However, given the Celtic Manor is described as a “luxury resort” and has 5-star status, the service was not what we had been expecting or hoping for our birthday celebrations. Would I recommend a visit? Yes, I think, but be warned about their scones and hopefully their service might have improved by the time you get there.

Merlin’s Magic Wand

Inspired by #GBBO

It takes a village

8 Replies

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.

Perfect pancakes

1 Reply

During our recent GOSH appointment, the conversation naturally turned to the food I’m cooking for M these days and how we could continue to vary the options available to him with such limited ingredients. The subject had turned to our plans to introduce white fish and whether there were any M-friendly free-from fishfingers on the market, which there aren’t. I was just saying that I had perfected a rice-flour tempura batter, which would be ideal for making fish bites, when M, without looking up from the handheld computer device he was engrossed by, piped up to inform them that “…Mummy cooks me chicken nuggets and deep-fried rice-balls and flatbreads and pancakes…” before carrying on with his game. The conversation paused briefly as the dietician took note and then carried on from there, but it made me realise that I had never shared my rice-flour pancake recipe and I vowed to change that as soon as I could.

Pancakes are one of those recipes that I attempted very early on in our free-from journey and are still a family favourite 4 years on. I make the big, fluffy ones most associated with North America and use the batter as a basis for other savoury treats such as corn or courgette fritters. The basic recipe contains very few ingredients and proved easy to convert to the updated M-friendly version that you can find here. I flavour them with a variety of green herbs and they form a tasty accompaniment to any meal, enjoyed by the whole family, not just M and I even cooked them recently when he had a friend round for tea, where they proved to be a hit.

One of the best things about these pancakes, other than how quickly you can whip up a batch, is just how versatile they can be. With a few careful choices about flavours, they can be either savoury or sweet and both have proved popular with M. They will also form the perfect platform for our mini-challenges on spices and flavourings over the coming weeks, which I know M can’t wait to try.

Quick update

1 Reply

With 2 weeks left to the end of term, there’s so much going on that I’ve barely got time to sit down and commit any useful thoughts to paper, so I’m afraid this post is just going to be a quick update. We’ve just had our first appointment in the new “Complex gastro and nutrition” clinic that our consultant and lovely specialist dietician have started at GOSH. The thinking behind this new clinic is that for children like M, who have a chronic gastro condition such as EGID as well as significant, complex and multiple food allergies, there needs to be regular meetings with both a gastro consultant and a dietician to ensure that everyone is singing from the same song sheet when it comes to treating the health of that child.

Hospital appointments always induce mild nerves in me, but this time round I felt more apprehensive than usual. We are now into month 8 of the NG-tube, when the initial plans were that M would have it for no more than 3 months at most and I was concerned that there might be discussion about removing the tube in the near future. M’s health has been so significantly improved since we went elemental in December that I don’t want to rock the boat any more than is necessary until we have a huge improvement with his diet. With only 4 foods on our “safe” list out of 12 tried so far, it has been a much longer process to reintroduce foods back than any of the medics expected, although, to be honest, Mike and I had always anticipated it taking a full year, if not longer. At the moment, M is coping well with his tube and is keen to keep trying new foods, so there are no concerns that the presence of the tube is having a detrimental effect on him in any way.

So, in a snapshot, the outcome of our appointment was this: that on almost every level, his health is remarkably stable right now and even his hay fever isn’t causing too many issues this year; but the area of most concern continues to be his ever-growing list of multiple food allergies. Our dietician is very worried that M is struggling to tolerate so many foods and now refers to him as one of her “biggest, but loveliest challenges”. The process of reintroduction has been so slow that until we have at least another 2 or 3 back in his diet, we cannot change the amount of E028 he’s having via his tube and so the tube obviously needs to stay in place. We have chosen the next 5 foods to try – white fish, pear, GF oats, venison and coconut – and will also be doing some mini-challenges to see if we can have some more spices and flavourings to add into my recipes. I will continue to remain in regular phone contact with her throughout these trials and we will keep persevering with the food challenges until our next scheduled appointment in around 4 months time.

Another food and an unexpected insight

5 Replies

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.

An unexpected day off!

1 Reply

As a parent of a child with a chronic illness, one of the unexpected challenges you have to cope with is finding people you trust to take on their care, even for a short while. It can be difficult to entrust your child and their needs to anyone other than immediate family and, for Mums in particular I suspect, that may mean you end up doing almost all of their care by yourself. The opportunities to have that much-talked about and desired “me-time” are often few and far between and, to be frank, if you do manage to grab some, it’s usually at the cost of not spending it with your significant other at a point when time together is most needed. In the 6 months since M had his tube, Mike and I have become like those proverbial “ships that pass in the night” as we juggle work commitments, school timetables, extra-curricular activities and those few social events that have helped keep us sane. Any time we have managed to spend together has revolved around appointments or meetings about M and the constraints of school hours.

We are extremely blessed that we do have an amazing support network surrounding us, which pulls together to ensure that we are able to keep going to work and can even occasionally both be out on the same evening, albeit often at separate events. My days are made easier by the fact that M’s school have so willingly shared my burden and responsibility by ensuring there are members of staff who know how to take care of his feeding pump and tube, meaning that I don’t have to be there every minute of every day. Without a doubt, their decision was made easier by the fact that I work less than 5 minutes away and they know they can call whenever they need to, but those phone-calls have been few and far between. My Mum lives close enough that she has been able to continue the routine of picking G and M up from school a couple of times a week, allowing me to work my hours and has been willing to provide some invaluable school holiday care for us too. We even have a babysitter who was willing to learn about the tube and whose GP parents, less than 5 minutes away, were an added bonus for the couple of hours we’ve needed once or twice.

Last week, we had an amazing offer from good friends – in fact, those GP parents I’ve just mentioned – which astounded us and gave us a break from routine that we haven’t enjoyed since last December. It all started at the beginning of half-term, when an unexpected text arrived on my phone as I was in the middle of convincing M to help me clear out and clean the pit he calls his bedroom:

“Hi, we wondered if we could look after the kids for you on Bank Holiday Monday so that you can have a bit of time for yourselves. Let us know what you think. O x”

Then there was a flurry of messages between us as I sat on M’s floor, overwhelmed and close to tears at the kindness of these friends. Not only were they offering to take G and M for a couple of hours, as I originally thought, but in fact wanted to look after them for the whole day and take them to a local wildlife park that I knew my 2 would love. They sorted out food, were not phased by the pump and tube and even claimed to be excited at the prospect of having G and M as their guests for the day. What was even better was that the children were as thrilled as their hosts at having a day out too; and what a day they had! For the rest of the week, it’s been endless tales of marble-run competitions, playing in the hay barn, seeing the animals and the zip-wire in their back garden.

As for Mike and me, well, we had our day together and enjoyed every moment. It may not have been the adrenalin-filled adventure experienced by our children, but we had time to buy some much-needed bits and pieces for the house, enjoy coffee and cake mid-shopping trip and lingered over a late lunch not constrained by complex food allergies and a restaurant of our choice. We didn’t get to the cinema as we had originally hoped we might, but thanks to my Mum, we got our night out at the theatre the following weekend instead – I know, two dates in one week, unheard of! Most importantly, we were able to spend precious time with each other without worrying what G and M were up to and without waiting anxiously for my phone to ring.

7 years to diagnosis

Searching for an answer

Tag Archives: EGID

The Start of a New School Year

Afternoon tea at the Celtic Manor

Merlin’s Magic Wand

Inspired by #GBBO

It takes a village

Perfect pancakes

Quick update

Another food and an unexpected insight

An unexpected day off!

NEAW 2015 – The Round-up