Tag Archives: Conditions and Diseases

Countdown to Cornwall

This time last year I had holiday-planned to within an inch of my life and had experienced amazing support from the folks at Virgin Atlantic. We had arrived at Disneyworld Florida, were impressed by the positive approach to M’s restricted diet shown by all and were loving our days in the sun. It really was a trip of a lifetime and we’ve all been reminiscing a lot about where we were and what we were doing this time last year.

Our plans this year have been much less grandiose and much closer to home. When we first started thinking about our summer holiday plans back in November, all we knew was that M was going to be going elemental sometime soon and would have a NG-tube in place. We didn’t know if it would still be there by the time this summer rolled around and had no idea what he’d be able to eat or how we’d all be coping with the change. We toyed with the idea of a holiday in Portugal, a favourite destination of us all, but just weren’t sure how confident we would be if we needed to travel abroad with a tube in place. Of course, with the benefit of hindsight and nearly 9 months experience, I am sure we would have coped just fine, but the uncertainty of all we’d be dealing with meant that instead we opted for staying in the UK and so we are now on our countdown to Cornwall.

Our front hallway currently resembles a storage facility as I pull out ready for packing, not just clothes and beach essentials, but safe food supplies for both G and M and, of course, everything we’ll need for M’s tube feeds. We have each chosen a day-trip we’d like to do whilst we’re there as well as researching the beaches surrounding Fowey, our base for the week. Mike has spent time looking at various “wet-weather” options as there’s no guarantee of sun in the UK, even in August, and we have been able to pencil in a day with G’s godmother, Godmama C and her lovely family as they will be holidaying there too. We might be staying in a self-catering apartment, but we’re also hoping to venture out to eat and my time has been spent trawling the internet looking for allergy-friendly restaurants and emailing to find out whether they will be able to accommodate M’s current food needs. The great news is that a couple have already replied to tell me that they are up for the challenge and I can’t wait to try them out and share our reviews of just how well they did for both M and G with you all. Even better, thanks to timely posts from fellow bloggers such as The Intolerant Gourmand and dedicated websites like Can I eat there?, I’ve been given some great top tips for making this a holiday to remember.

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.

Quick update

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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

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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.

Sports Day success

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Sports Day conjures up so many memories for me: of races run, giggles with friends, frenzied cheering and the exhilaration of realising that your House has actually won the coveted cup. A day full of so many heightened emotions and today, for me, held more than any other in the past. Not surprisingly I wondered what the day had in store for M and worried a little about how he’d manage the races with his cumbersome pump pack strapped to his back and his tube taped to his face. And it was the end of an era for G. We’re in to the final stretch: May half-term is over, SATs have finished, the Year 6 production rehearsals are ramping up and in less than 6 weeks time, my first baby will have finished her Junior school years and “big school” beckons for September.

One of the very many things I love about the kids’ school is that they still hold a competitive Sports Day, where winning means something, but is not as important as team spirit, or encouragement, or taking part. or cheering for everyone in the race, whichever House they represent or whatever position they finish. I still remember the very first Sports Day I saw at this school, when G moved there half-way through her Year 4 year. I was instantly impressed by the support and encouragement given to, and by, every year group to each other. I saw Year 6 boys cheering their peers on, waiting by the finish line to welcome the last child in, however old they were and thumping them on the back for a job well done. When I saw that I knew that we had made the right decision in choosing this school for our pair and looked forward to them becoming a part of it.

Three years on from that first Sports Day and I stood proudly on the sidelines cheering both my children on. The first half of the morning was occupied with following M’s class around the circuit of team races and the occasional mad-dash removal of his pump pack when it suddenly became evident that neither skipping ropes or sacks were going to work with a heavy back-pack in situ. He took part in every activity and my heart swelled when his entire class chanted his name as he completed a second turn in the sack race for his House. For his lap in the family relay – a team consisting of one child from each year group – he and I agreed that he could race pump free and with his tube strapped down and, boy, was it worth it. He flew down the track at lightening speed, proving to all watching that his tube really doesn’t stand in his way, especially not when it comes to winning points for his House.

Disappointingly, I couldn’t watch as much of G as I would have liked, but despite only being able to watch her complete one of the initial team races, I was able to cheer her on during what I was thought was her only other event, the over-and-under race. To my surprise, as she and I stood side-by-side watching M run his relay, surrounded by their House, she announced that she was also running in the Year 6 girls’ relay, a race I would have never anticipated her taking part in as she’s really not a runner at heart. And so, this year’s Sports Day experience finished in fine fashion with M taking G’s place next to me, cheering his big sister on as she competed in her final race of her Junior school days.

An unexpected day off!

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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.

NEAW 2015 – The Round-up

NEAW 2015 – The final day

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This has been the hardest day’s blog to write. Inspiration has been lacking and I just couldn’t think of what to write about on the subject of “Engage“. In an attempt to stir my creative juices, I looked again at the many daily updates, photos, videos and statistics I’ve been seeing, reading and “liking” all week, posted by many fellow EGID families on their FB pages, all in an attempt to raise awareness of the illness. It was as I was browsing that I started to notice that many of them began, almost apologetically, with words to the effect that they were sorry to be bombarding their FB friends with these regular informational posts on the subject, but that it would be for this one week only.

That’s when it struck me. This week, 7 days from May 17th to 23rd, I and tens of other EGID families here in the UK and across the world have been fighting hard to raise awareness of this illness that impacts our lives; and we’ve been apologising for it. We’ve been grateful that we have been able to engage with our audience this week and we’ve almost promised to give it a rest until NEAW 2016 rolls around. BUT the reality of EGID for us is that we don’t get that break. We don’t get the chance to focus on it for one week only and then go back to the daily grind of school runs, workloads and running the home. This is it. It’s not even just a year-long commitment, but a life-long one and there’s no escape. I can’t shut down my computer and ignore the posts. I can’t groan inwardly, grit my teeth and ride the week out, thankful that the 24th will soon be here and then breathe a huge sigh of relief that that’s it done for another year. I don’t have that privilege.

The reason the EGID community has been trying so hard to engage with you this week is the people in our lives who struggle with this rare condition on a daily basis: our superheroes. Their strength and courage in facing adversity is awesome and their brave smiles bring inspiration at the most difficult of times.

My reasons for engagement are summed up beautifully here by my 2 amazing children:

and with that, there really is nothing more to say.

Our thanks go to…

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The week is winding down and I am definitely looking forward to the start of half-term and the chance to have a sleep-in over the weekend. One’s thing for certain, being active in raising awareness whilst eating a restricted diet really takes it out of you!

With T for Thanks being our topic for today, what else could I do, but issue a few heart-felt thank-yous to those who’ve made a difference to us in the 12 months since the last NEAW. It’s tricky to know where to start, but, in no particular order, I’d like to thank:

Our families – well it was a given really, wasn’t it? But whichever side of the ocean they may live, our families have been there in whatever way they can and supported us in the tricky decision to move M to a NG-tube and the elemental diet. We don’t know exactly what the next 12 months hold in store for us, but we can be certain that our families will be there every step of the way.

Our friends – another obvious lot, but again we couldn’t have survived the past year without them all. Their help has been invaluable: from text messages to lengthy phone conversations; early morning G-sitting to late night conversations with a cup of tea; and much-needed hugs to unexpected hospital mail, every single gesture has meant more than they can ever imagine and helped keep us strong.

GOSH – our consultant, her great gastro team and, in particular, the fantastic nurses who work with such dedication on Rainforest ward. Their care for M back in December was just amazing and without them looking after us both and giving wise words and training, we’d have struggled even more with the reality of the NG-tube and the feeding pump. We also owe massive thanks to M’s fabulous dietitian, who is always at the end of the phone or the email and has given me lots of helpful recommendations as well as reassuring me that I’m doing things right when it comes to the whole food re-introduction thing.

M’s School – I am very aware of just how lucky we have been with the staff at M and G’s school. They have been so understanding of how life was changing for both children during this school year and have made every effort to look after them and help them feel happy and safe when at school. 5 of the teaching staff bravely took on the role to learn how to manage his feeding pump, which meant that I could return to my job, confident that they were competent in what they needed to do. This week they were also quick to agree to M’s request to share his presentation to the rest of the school and every teacher made time to make sure their class could see it and ask any questions they had. This school has done a wonderful job of nurturing both my children and I will be sad when G moves on to “big school” in September.

G – the best big sister that M could ever have had. She’s loved her little brother through some of his darkest moods and, even if there’s a bit too much squabbling at times for my liking, she’s managed to continue to work on building a strong relationship with him that I hope will only get stronger in time. She’s survived the challenge of SATs, maybe not without the odd tantrum along the way, and continues to strive to do her best at school and at home. And my heart nearly burst with pride the other week when she announced at Stagecoach that M is her hero, because of how bravely he lives and copes with EGID.

Mike – I couldn’t finish without recognising the person who stands alongside me on this, the most challenging of journeys we’ve been on together, and is my strength when I’m feeling weak. We’ve reached a harmony that enables us to take turns in being the strong one during appointments and I can’t think of anyone I’d rather be facing these decisions with. He also understands my need to have some time to escape from the day-to-day grind of EGID and puts up with me disappearing off twice a week to choir rehearsals.

And thanks to all of you, who’ve kept reading my blog, put up with ~~some~~…~~many~~…repeated requests on my part and have done an amazing job at sharing my posts on. Your silent show of support is what helps keep me going, even when times are tough.

Changing Attitudes – NEAW 2015

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Last week I took part in the Diabetes blog week and looked at my changing attitude to my T1D over the past 3 decades as well as changes I hope will happen in the future. My plea for improved education about T1D vs. T2D is closely linked to my longing for increased awareness about EGID and has resulted in my efforts to bring the focus of family, friends and our local community to the subject through local media coverage and social media this week.

During a music break in my recent radio interview, the presenter asked me an interesting question: whether I’m upset when people misunderstand EGID? We had been discussing off-air the fact that there is often recognition of the food allergies side of the illness, rather than the disease itself and whilst I understand that allergies are something easy for people to understand, I’m frustrated that that’s what gets people interested in finding out more. I pondered his question for a while and once the session was over was able to give him my honest answer: No. I’m not upset that people misunderstand EGID because I’m usually impressed that they know something about it. The truth is that they must have heard of EGID in the first place to be capable of misunderstanding this complex disease and therein lies the problem. Ignorance of EGID and the unseen effects it has on individual and family alike means that those of us living with it are sadly often viewed as making it all up or wildly exaggerating the severity. That attitude can leave a family feeling very alone at a time when emotional and practical support is needed most.

This is what today’s C is all about – Changing Attitudes.

The truth about EGID is this: It’s not just about the food allergies, that’s the easy bit to understand and, in many ways, the easiest bit to live with. It’s about much, much more than that. It’s about the unexplained joint aches, the never-ending tummy cramps, the relentless feelings of nausea or reflux whenever you eat. The dark shadows under the eyes, the manic mood swings, the overwhelming lethargy, or the inability to fall asleep and stay that way. The damaged bowel, the fear of not being near enough to a toilet whenever you need one, or knowing that you’ll never get there in time anyway. The fear of your friends making fun of your allergies or finding out that you’re still wearing a pull-up because your bowel can’t be relied on when you most need it to. The daily medicines, restricted diets and the feeding tubes. The chronic pain that can reduce you to tears, yet you don’t complain because nothing helps, even when it’s at its worst and you’re familiar with just about every pain chart created in the history of man.

It’s about getting used to these things as being normal, or not even realising they’re not.

And it affects the whole family, not just the one with the diagnosis. The endless merry-go-round of numerous hospital appointments, medicines to be taken and food to be cooked safely, avoiding cross-contamination at all costs is exhausting. The keeping of meticulous daily records of food eaten and symptoms experienced to try to find a link and make sense of what’s going on, and dealing with the self-recrimination when you miss a day out because what if that was the one that would give you more answers? Day trips, meals out, holidays all require military precision to organise and every decision is coloured by whether needs can be met or not. The feelings of isolation, for parent and sibling alike, because it’s frequently the case that there is no-one else nearby who has the same experiences or can truly understand. The lack of any conversation that doesn’t revolve around toileting and being too worn out to come up with an alternative subject. The sense that I, as the parent, know more about the intricacies of my son’s chronic illness than any medical professional we meet along the way and the frightening realisation that my children know infinitely more than them too.

It’s about the heartbreak of holding my sobbing child at 3am, tears streaming down my own cheeks as I struggle to find the words to bring the comfort that nothing else can bring at that moment in time.

At our recent admission at GOSH, one of the gastro consultants told me that it is widely recognised that children with gastro conditions have the worst quality of life of any child living with a chronic illness. EGID is an invisible illness, one where the individual frequently learns to hide, disguise and survive their struggles and just carries on regardless, accepting this life as their norm. Families supporting a loved one with EGID often feel isolated – not just from their circle of friends, but from the medical community, who know little about it and may question the integrity of the very people who are fighting to get the best care they possibly can. It’s not a parental fad about food allergies or an over-anxious Mum fussing about the small things; and it’s definitely not a figment of anyone’s imagination. The effects of EGID can be cruel to experience and devastating to see. So a change in attitudes is not only important, but a necessity for all those living with this diagnosis.

Now you know a little more about EGID and just how it impacts, take some time to think about how you can support those you know living with this disease. Don’t think that there’s nothing you can do to help. An offer of a cup of tea once the school-run is over, a home-cooked meal for the parent not in hospital or checking to see if there’s anything they need from the shops is more than enough. No gesture is too small: a smile, a text message or even a FB like or comment on Twitter will let that family know that they’re in your thoughts and that there is hope for change in the future.

7 years to diagnosis

Searching for an answer

Tag Archives: Conditions and Diseases

Countdown to Cornwall

It takes a village

Quick update

Another food and an unexpected insight

Sports Day success

An unexpected day off!

NEAW 2015 – The Round-up

NEAW 2015 – The final day

Our thanks go to…