Tag Archives: tube feeding

NEAW 2016 – All over for another year

NEAW 2016 – Through the eyes of a child

Last year M decided to create a presentation that he could use to explain EGID and his feeding tube to his school. He and G worked together to produce a video telling the story of the first 9 years of his life, which they then showed to all the classes and took part in 8 separate Q&A sessions to help their peers understand more; something they did with great success. This year my dynamic duo took on the challenge again and decided to work on something completely different. M worked hard to write a story looking at EGID through his eyes, which G then illustrated and, with a little help from me, they have made a video that reflects their understanding of his chronic illness. M has again shown the film at school, although this time it was used in today’s whole school assembly rather than shown to each class in turn. Our aim was to explain EGID in a way that children would completely understand and hopefully would enjoy. We really hope that you enjoy it as much as we loved making it and please share it on to help us raise as much awareness as we possibly can.

Just a reminder that as well as raising awareness of EGID this week, we are also fundraising for Over The Wall Serious Fun camps. If you are able to donate, even a small amount, that donation with make a big difference to children like M and G, who benefit massively from these camps. You can donate via my Just Giving page or the link on the side of this page. Thank you!

NEAW 2016 – Definition of a hero

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How do we define a hero?

The dictionary definition describes a hero as “…a person, typically a man, who is admired for their courage, outstanding achievements, or noble qualities…“, but personally I prefer the description given by Christopher Reeve. That man, best known for portraying iconic superhero Superman and his unparalleled physical strength, had to learn to develop a mental strength of epic proportions when faced with the devastation of complete paralysis following an accident that changed the direction of his life in the proverbial blink of an eye. He truly became an individual who persevered and endured and succeeded despite the obstacle of his impaired health and he willingly lent his voice to the campaign seeking a cure for spinal cord injury as well as improving the quality of life for those living with paralysis. An amazing and inspirational man.

Last week’s Invictus Games gave us a glimpse of a different set of heroes, who have survived, and continue to survive, against the most unbelievable odds. Their stories bring a tear to the eye and a lump to the throat and are more than enough to inspire you, and their determination to live life to its fullest is simply awesome to witness. These servicemen and women have taken the tragedy of mental and physical injury and turned it into a stepping stone to reach a new goal. Be they athletes or members of the Invictus Choir, their courage in overcoming challenges that most of us can’t even begin to imagine, as well as being prepared to share their struggles in the public eye, makes them a great inspiration for anyone facing their own silent battles.

So, it seems that M’s recent homework came at an opportune time. He was asked to think of a person who inspires him – famous, family member or friend – and come to school prepared with a picture and a 1 minute presentation explaining what makes that person inspirational in his eyes. With so many varied choices out there, I was intrigued to find out who he would choose, fully expecting him to struggle to decide and wanting to see if his final selection would give me an idea for a blog during #NEAW16. I’ve got my blog post, and it turned out that I was wrong as M knew almost immediately the person who inspires him and the reasons why. This is what he wrote:

Finley, who is nearly 6, is one of M’s #EGID and #GOSH friends and is unable to eat anything. M often talks about Finley: the uniqueness of his chronic illness and his ever-present smile despite the challenges, so it came as no great surprise to me that M finds him inspirational. For M, Finley is the definition of an EGID hero; but he’s not the only one. We have come across hero after hero in our contact with our extended EGID family, including those young people and adults who, in the way they live their lives, are giving my son something to aspire to and showing him that he can achieve the goals he sets for himself. We’ve celebrated with others as their loved ones have achieved exam success, received college or university places and started out on new careers. Sharing these milestones within our EGID community reflects that these are families like ours, who are trying to make the best of the situation they find themselves in and using their own experiences and successes to encourage and help others whenever they can.

For me, the best response to M’s homework came during his last Stagecoach session as he described Finley to his singing teacher. That lovely teacher turned to my boy and gently said, “You are one of the most courageous and kind-hearted children I know. That reason you’ve just given me for why you admire Finley, is the very reason why you inspire me. Despite everything you cope with, every week without fail you turn up here and have a cheeky smile on your face that cheers me up and makes me smile.” And the look of quiet pride that slowly spread across M’s face as he absorbed that compliment told me everything I already knew: that in his own unique way, M also embodies the very definition of an EGID hero.

Why we should value our NHS

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If you live in the UK, you can’t help but be aware of the current problems faced by the NHS. The continuing debate over contracts for junior doctors has led to 4 strikes in the last 4 months, though the discussion has been raging for much longer, and there are more strikes on the cards if the issues can’t be resolved. Theses issues have been well-documented in the national press and I’ve no doubt that those of us who depend on a very regular basis on the healthcare provided by the NHS have our own opinions about these strikes, especially if we know, or indeed are, one of the 25,000 cancelled operations that have resulted from their action. Whatever your thoughts about these strikes – and believe me when I say that I’ve heard a huge cross-section of opinions from friends and acquaintances – it is impossible to ignore the underlying truth that the NHS is struggling and its future doesn’t necessarily look all that rosy.

Over the last 5 years, our experiences of the NHS have ranged from the outstandingly good to the outrageously awful. We continue to have a very reluctant relationship with our local hospital, who has unquestionably failed M at almost every step of the way and it is only our belief that local support and care is tantamount to his continued health and well-being as well as our peace of mind that has kept us in the battle for a shared care relationship between our local and GOSH. Likewise, whilst we are extremely grateful to M’s GOSH consultant and dietician, who not only gave us that elusive diagnosis 3 years ago, but who continue to advise, support and care for him with the honesty that we requested, the disastrous outcomes of our last admission have tested that “doctor – patient’s parent” relationship to its limits. We have accepted that they don’t have all the answers, nor access to that much longed-for magic wand, but we will keep going back because we have absolute confidence that M’s medical team, at least, will carry on striving to do their best for our medically complex challenge of a child.

Yet, despite all the lows, the high points mean that I can see there is something truly wonderful to be valued about our NHS. I see it in the regular phone-conversations that happen between M’s dietician and me, so that she can keep an eye on what’s going on from a food point of view and monitor how well he’s managing with drinking his E028 now that the NG-tube is gone. I see it when she takes her concerns to M’s consultant and talks them through and agrees a way forward, so that we don’t have to wait months for our next trek to London for an appointment before we act on the problems we’re experiencing now. I saw it in the care given to both M and me during his admission, when the nurses made sure that his best interests were met as far as possible and offered cups of tea when they were otherwise powerless to help. I saw it in the frankness awarded to Mike and I during the December debacle, when we asked for an honest opinion about his future health and what we could expect; and it was given.

And I see it at the local level that for most of us is our main contact with the NHS. Not the senior consultants, junior doctors and hospital staff dealing with the chronically ill, but through the GPs surgeries and the doctors, nurses and other staff that work there. I know that we are incredibly lucky with the local medical centre that’s found in our small village and for as long as we have been a part of it, they have gone above and beyond so many times to make things easier and get answers and help whenever we’ve needed it. Recently, I hit an unexpected stumbling block in ordering the E028 formula needed to keep M going, one that had been caused by a lack of communication between the feeding team at our local hospital and just about everyone else. A feeding team nurse had contacted GOSH to confirm whether M still needed regular tube changes and, on being told that he no longer had his tube, she cancelled the monthly orders with the feeding company. Nothing wrong there you may think and I’d agree, except she didn’t advise us that she’d cancelled it, nor did she tell our GP that it was now their responsibility to sort out his monthly prescriptions.

Thanks to past experience and my somewhat controlling approach to always having a supply of E028 in the house, I started chasing about when we could expect our next delivery whilst there was still a good amount of stock in my dining room and spent the next 40 minutes being pushed from pillar to post as I tried to track down who I needed to speak to and unpick exactly what had happened. When I finally established what I had to do, it was my wonderful GP’s surgery that I turned to and their fantastically competent staff. With the help of 1 receptionist, 1 member of office staff and the invaluable pharmacist, we eventually got M’s prescription sorted and marked as an ongoing monthly medication. They phoned, researched, ploughed through reams of medical notes and faxed until it was all sorted – and all with the attitude that they wanted to help, were willing to help and were happy to help, and a ready smile that reassured me I wasn’t being too much of a problem in their already busy day.

That is caring for the patient at its absolute best and that’s why we should value our NHS; for all those staff who get little thanks but make a big difference – or certainly did for this harassed Mum!

Over The Wall

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It was last summer when I first heard about Over The Wall and the amazing camps they run across the UK for children with serious health problems. M’s GOSH and EGID friend, R and his big sister, I otw were fortunate to go to one and the photos and comments about it posted by their Mum, Annie left me determined to find out more and see whether M might similarly qualify for a place.

Over the Wall is a UK-based charity that is part of the international SeriousFun Children’s Network, which is based on an original idea set up by actor Paul Newman in the 1980s. He identified that the popular US summer camps attended by thousands of American school children every year often left out children living with chronic health conditions because of the inability of camp volunteers to cope with the often complex medical needs. His vision was to open up that opportunity to every child, regardless of their health needs, and he helped to provide full support for every child whilst they were away from home. These children got the full “camp” experience as they were unaccompanied by parents or carers and were able to enjoy a touch of “normal” in their otherwise complicated lives. From that simple starting point, one camp spread across the US and into countries across the world and soon followed the realisation that not only did the sick child miss out, but so, all too often, did their siblings and the idea for a separate siblings camp was formed.

I was delighted to learn about the siblings camp and, feeling that this was another great opportunity for G to escape the constraints of a sick sibling and be surrounded and supported by others in the same situation, duly applied; and so it was that a couple of weeks ago, G headed off to deepest, darkest Dorset for a week of serious fun. Just as her Young Carers group gives her the opportunity to have time away from M with other local youngsters in similar supporting roles, G spent the week with other 8-17 year olds from across the South of England and Wales, who all have 1 thing in a common: a brother or sister living with a chronic health problem. It was a week to be herself, not defined or viewed in her role as M’s big sister, and encouraged to take time to focus on herself without worrying about M and how he would feel.

The children who attend are split into 8 groups: 4 colours determined by their age, with orange for the youngest and blue for the oldest; and then each colour split into separate boys and girls teams. Volunteers are a key part of the camps and their numbers match camper numbers, so for the 60+ children on the 2016 South Siblings Camp, there were 60+ volunteers supporting them, encouraging them and making sure they had fun. During the week the teams participate in a number of activities, from swimming to archery and from climbing to arts and crafts and much, much more. Their days are carefully planned with breaks and an after lunch rest hour, which G tells me was strictly adhered to, as well as a cabin chat every evening, where the teams reflect on their days and every member is awarded a bead to recognise what they’ve achieved. Discos, team games, inter-team challenges, morning singsongs, new activities, skills learned, old favourites and even a talent show sum up G’s week away.

G’s enthusiasm about her time on camp has been wonderful to hear and she was keen to teach M the camp songs and share so many snippets of everything she got up to whilst there. I love the fact that there was little or no discussion about their chronically ill siblings, but instead the focus was well and truly where it needed to be – on these children who all too frequently miss out. I was impressed with the array of meaningful mementoes that G brought home with her, as impressed as she was delighted. More than just her purple OTW t-shirt and a black one for M, but also a carefully crafted wooden bird-box, team and camp photos, a hand-print card holding the reflections of the team – both peers and volunteers – on who G is as a person and why they appreciated her, and that precious collection of beads reflecting her achievements during the week, recognised by her team volunteers and accompanied by a written record of why they felt she had earned them. All of these things have built up her self-confidence in those few days away and have helped her feel even more valued within this new group of friends.

For us, it was an unnaturally quiet week in the household and there was a definite sense of something missing from our every activity. M was reluctant to admit to missing having G around to play with and torment, but his move to sleep in her bed every night she was away revealed the depth of those feelings he didn’t want to show.

As a parent, you know you’re on to a good thing when you child asks for more and G has already asked if we can apply for her to go again next year if at all possible. Her enthusiasm about her experience has bubbled over and infected the whole family with M now having everything firmly crossed that his application for a place on the August Health Challenges Camp is successful. That would see him having those same opportunities to enjoy as G in an environment that we can be confident will be safe for him as there are medical volunteers and 1-to-1 support for the chronically ill children. Even better, the children have decided to make OTW the focus of their fundraising efforts during National Eosinophil Awareness Week this May. The one thing I haven’t mentioned is that these camps are offered completely free to those children who attend, making them truly accessible to all, which is a really fantastic part of this charity. Any funds that G and M can raise will help make a huge difference to others like them and if you’d like to make a small donation, you can do so via this link or the button on the right, with our thanks.

Reaching out

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I am, without a doubt, a firm believer that things happen for a reason and that the lessons I’ve learned, the situations we’ve survived and the successes we’ve fought for and achieved over the last few years have given me an understanding and empathy that nothing else could have done in the same way. I have discovered within myself a strength I didn’t know was lurking, which has seen me through some of the darkest days I’ve ever had to face. My Mum and Aunt love to remind me I come from a line of strong women and these challenges have helped me grow even stronger. The struggles I’ve had to face have enabled me to reach out and bring some comfort and reassurance and offer an ear always ready to listen when others have most needed it. What’s more, not only can I speak from a shared experience and the common bond of parenting a child with a chronic illness, but I want to give support when it’s most needed. That incomparable insight is what almost makes the challenges of M’s health worthwhile, for whilst I would give anything for him not to have to live with a rare illness like EC, it has, without a doubt, given me a compassion and understanding beyond what I would otherwise have known.

When setting up my blog 3 years ago, part of the process was to pen something that would honestly capture who I am and the reasons behind my decision to start it to include in my “About me” page. I won’t deny that this blog has undoubtedly become an inexpensive form of therapy for me, allowing me to explore my innermost thoughts and feelings about the chronic illness that has dominated so much of the last 10 years of our lives as well as sharing our experiences of it; but that wasn’t my raison d’être. What I wanted most was to be able to reach out to others who were facing similar challenges “…if I am able to speak to the heart of even one parent who is going through the same turmoils, then I know the hard work will have been worth it…” In the months since I first wrote down that somewhat ambitious desire, I have received the occasional e-mail telling me that what I’ve written has really resonated with another parent, responses that have meant so much as they acknowledge an achievement of my goal above and beyond what I originally wanted.

Knowing that I have received those messages you could easily assume that I might consider it a job well done and just leave it there, but over the last few weeks I have received more messages of encouragement than I ever anticipated and have found myself in the position of being able to offer support and advice when I least expected it. Those opportunities have drawn on the many facets of my life experiences, from seeking a diagnosis of EC to coping with a new diagnosis of T1D and from facing the daunting reality of tube-feeding to the challenge of switching a child to a gluten-free diet. What is even more amazing is that the people I’ve been talking to have been a mix too: Mums from school, friends met through support groups and those just looking for reassurance from someone who has already walked the path they now find themselves on. I don’t claim to be an expert in any of these things, but I am an expert in my child and our experiences and can offer an insight into how we have coped and the tips I’ve picked up along the way. When we started out on our search for a diagnosis for M, and then again when we made the decision to move to tube-feeding, the information readily available was scant and it took dedicated research and hours of reading, and re-reading, medical journals and the such-like to even begin to understand what we were facing. It was thanks to on-line forums such as FABED and PINNT and their members that we began to truly comprehend the complexities of life with a chronically ill child. My blog has simply been an effective way to put all of our experiences into one place, hopefully with some useful pointers for others in the same shoes and, by doing that, to create my very own, very personal resource.

What’s even better in my opinion is that my passion to reach out and help others has been adopted by both children too. G has developed an empathy and understanding that extends out from the home into the classroom and wider world, and which has been commented on in recent weeks by her teachers and the volunteers at camp. She shows an amazing amount of tolerance towards the challenging behaviours and differing views of her peers and is always prepared to listen and respect what they have to say, whilst standing her ground with her own opinions. G is also sympathetic to those who are in the same position of having a sibling with a chronic illness and can fully understand the frustrations that the sometimes difficult behaviours of those siblings can cause. Whilst sometimes reluctant to deal with M at home, she never hesitates to offer help to those around her when it’s needed.

In similar fashion, M has developed a compassion that I can only attribute to the reality of a life altered beyond recognition by EC and multiple food allergies. At a recent birthday party, one of his friends was confined to a wheelchair due to an ankle injury and M immediately stepped in to make sure this friend could be as involved as possible, despite the constraints of the wheelchair. He took the time to push his friend around the garden so he could join in the activities and toasted marshmallows on the camp-fire for him, even though he wasn’t able to eat them himself. Likewise, another good friend has just been switched to a gluten-free diet and M has made sure he sits with him during lunchtimes at school to discuss the different foods that C has been trying. The parent of this friend rocked my world nearly 3 years ago by inviting M home for tea and being willing to cook to suit his complicated needs, not just that one time, but numerous times since. It feels rather wonderful to know that my boy is now returning that favour and giving this friend the chance to vent about his new diet.

I don’t know what the next few months will bring and the opportunities to offer support may start to dwindle, but there’s one thing I know for sure, as a family we will all continue to reach out and help out whenever we can.

A Birthday* surprise (*cake recipe included!)

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Six months ago I tackled the challenge of a birthday cake for M, where the only ingredients he could eat safely didn’t lend themselves to whipping up a tasty sponge and he ended up with a 3-tier Cluedo-themed “fake” cake. Six months before that, I adapted a crazy cake recipe to create a M-friendly chocolate masterpiece for my Mum’s milestone birthday.

Somehow it seems fitting that we’ve come almost full circle in our cake journey and I’ve recently found myself facing the task of another birthday cake for Mum and, more than that, one which could be eaten and enjoyed by us all. The apple and rice flour cupcakes I’ve been making have been a real winner with the children, but the ever-persistent problem of a granular taste to these bakes, no matter what I’ve tried, meant that I was desperate to find an alternative and better recipe to mark this special occasion. Despite frequent google searches, that recipe was proving to be irritatingly elusive and it was only when we finally achieved a fifth safe food for M that I struck birthday cake gold.

To be perfectly honest, it really all came as something of a surprise success as I had no great hopes of yet another search turning up a rice flour cake that would 1) accommodate M’s restricted diet and 2) taste delicious. Despite my doubts, I thought it worth a look with our new ingredient of pear added to the mix and came across this easy recipe for pear and rice flour cupcakes that were not only gluten- and dairy- as advertised, but also egg- and soya-free too. I decided to do a test run and made a quick batch whilst G and M were in school. By the time they arrived home, the house was filled with the tantalising smell of fresh baking and M’s nose instantly went into impressive action as he begged to know if he could taste-test the cakes I’d been preparing that afternoon. Three cupcakes quickly disappeared from the cooling rack and I was thrilled to discover that there was none of that unpleasant granular taste that I’ve come to associate with rice flour baking. With an instant hit on my hands, I now needed to decide whether to attempt a cupcake tower for my Mum or see if I could cook a more traditional cake using the same recipe.

Due to an abundance of apples in our household at the moment – the benefit of apple trees conveniently located at my Mum’s, my office and at a friend’s – I tweaked the recipe to include some apple and reduced down the original quantities of oil and syrup as the original cupcakes had been a little too sweet for my liking. I waited nervously as the cakes baked, fingers tightly crossed that the larger layers would turn out as well as the cupcakes had and I needn’t have worried. The cakes looked impressive and I now have yet another great recipe to add to my list. Having left them to cool in the fridge (no #GBBO-style “wafting” in my household!) I sandwiched them together with some home-made apple purée before turning my mind to the knotty subject of how to decorate it all.

Now, if I had seen at that point episode 7 of #GBBO, I might have taken my inspiration from Paul’s amazing apple swans and spent my afternoon carving the intricate decorations to top the cake, but fortunately, or maybe unfortunately – I suppose it depends on your point of view – that episode had yet to air and instead I found myself using my time much more wisely: I was back on google trying to work out if a dairy-free buttercream icing was at all possible. To my delight and complete surprise, I found a way to adapt a recipe and create my very own coconut oil icing, which would tick all the boxes when it came to M’s dietary requirements. Whilst he is unable to eat coconut milk or flesh, he is able to tolerate the oil and I was over-the-moon to have the chance to finally bake a cake that actually looked and tasted like “real” cake for him to try for the first time in nearly a year. I took a tentative and small first mouthful to check the taste before spreading it across my cake. It has, unsurprisingly, a strong coconut taste, but this complimented the apple and pear flavours of the cake and was beautifully easy to use.

The icing was easy to make and I’ve no doubt I’ll be making more the next time a M-friendly cake is required. To make my recipe, I used:

250g solid coconut oil
200g icing sugar
2tsp vanilla extract
3tbsp rice milk

Put the “solid” coconut oil – it should not be liquid at room temperature – into a bowl and blend until smooth
Slowly add the icing sugar and vanilla, continuing to beat the mixture
Finally add the rice milk, 1 tbsp at a time until you reach the consistency required. You can add more or less rice milk depending on how spreadable you want the icing to be
At this point I added some food colouring, one drop at a time, until I got the colour I was after – I’m not too sure about the green icing I ended up with, it was Mike’s suggestion and I’m not convinced it was the right one!
Use to decorate cakes or cupcakes. Whatever your opinion of the colour, the finished result looked spectacular and I’m pleased to say it tasted amazing too!

NB – you can add any other safe flavours or colourings instead of the vanilla

This recipe is an entry into the #Swearbyit challenge with Vita Coco. Find more great coconut oil recipes and tips on using coconut oil at http://www.swearbyit.com”

What makes them rare

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February 29th: a special day, an unusual day, a day so rare that it only comes round once every 4 years and, quite frankly, the perfect day to mark Rare Disease Day 2016. This is the opportunity to raise awareness of rare diseases and the impact they have on the people living with them, not just with the general public, but amongst medical professionals and policy-makers too. It initially launched as a European event in 2008 and is now marked in over 80 countries worldwide.

What is meant by a rare disease? Definitions of “rare” do differ from country to country, but across Europe a disease is considered rare when fewer than 1 in 2,000 people is diagnosed with it. The threshold in the USA is defined as when fewer than 200,000 Americans are diagnosed with that illness at any given time.

How many rare diseases are there? There are over 6,000 rare diseases known to be in existence and 80% of these have been identified as having genetic origins. Astonishingly, approximately 5 new rare diseases are described in medical literature every week.

Who is affected? Rare diseases can affect everyone, they’re not fussy about who they pick on. Over 3.5million people in the UK are affected by a rare disease, which equates to 1 in every 17 UK nationals. Somewhere between 50% and 75% of rare diseases will affect children and scarily, 30% of rare disease patients will die before they reach their 5th birthday.

Why raise awareness? The symptoms of a rare disease are frequently multiple and varied and not only are they not exclusive to that illness, but neither are they all experienced by all patients, which makes diagnosis a long and drawn out process. All too often the diseases are misdiagnosed and beneficial treatment can be unavoidably delayed. A lack of scientific knowledge and consensus throughout the medical community can add to the complexity of reaching a diagnosis and adds significantly to the burdens placed on the patient and their family.

What does Rare Disease Day mean to us?

Imagine being told that your child has a chronic illness that neither you, nor most of the medical professionals you’ll end up meeting from that point on, can pronounce – or have even heard of until that moment.

Imagine finding out that that illness is rare: that around 1 in 10,000 people are diagnosed with the most common form, but that your child has one of the rarest forms and that there is little research into it.

Imagine learning that even the medical community struggles to reach a consensus about this rare disease and whether it really exists or is simply part of a much bigger picture – but nonetheless, having to live with the reality of this rare disease and its effects on your family’s life on a daily basis.

(For those who wonder if EGID is real, try living with anyone who is in the midst of an EGID flare up and, bigger picture or not, you’ll understand why we will continue to fight for research into this unquestionably chronic and life-impacting illness.)

Imagine the heartbreak of holding your sobbing child at 3am, with tears streaming down your own face, as you struggle to find some, any words to bring him a little comfort.

Imagine taking one food after another out of his diet in a hope to bring some relief from the chronic pain and poor bowel function, until you are left with the final realisation that perhaps you need to remove everything and feed him via a tube to see if that is the answer you’ve been seeking for the first 9 years of his life.

And then imagine starting to put foods back in, one at a time, only to discover that his body has allergic reactions to more than you ever thought possible.

Does this sound familiar to you?

This is the reality of the last 3 years of our life with a rare disease as the truth of EGID is that symptoms are complex, understanding is limited and medical research funding scarce. M’s diagnosis with EC makes him rare, so please help raise awareness today, not just about EGID, but of other rare diseases and those living with them too.