Tag Archives: NG tube

From all angles

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

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

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

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

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

The impact of mental health

In a world that is frighteningly open as people regularly share their location, activities and even the contents of their lunch box via social media, there is still a huge reluctance to linger on anything that hints at emotional instability or mental distress; but the sad truth is that matters of mental health are a huge part of living with a chronic illness and not just for the individual concerned. Today is World Mental Health Day, a day that is seeking to raise awareness of mental health conditions in an open and honest way, to encourage individuals to understand more about how these problems can affect just about anyone at one time or another in their lives and how others can support them. There is a tendency to make light of the language used when referring to mental health issues, after all, how many times have we heard someone say that they’re feeling depressed about having to go back to work after a holiday or the break-up of a particular pop group1-in-6-wmhd, when what they really mean is that such events have saddened or upset them rather than the total immobilisation that comes when you struggle with depression on a daily basis. I am not devaluing the emotions they may be experiencing when those things happen, but are they really akin to the overwhelming nature of depression? I think not.

I don’t speak lightly as I have been dealing with the constant presence of recurring depression since my teenage years. I know what that “black dog” is like and just how much it can impact on your ability to function on a day-to-day basis in the real world. As a teenager living with T1D, I struggled with accepting that this was a reality that was never going to change for me, that the need for regular injections, sensible eating and facing the risk of serious complications was never going to disappear. I didn’t handle it well. Though few of my peers may have realised it at the time, I refused to do what I needed to do to maintain my health, not because I wanted to cause myself problems, but because I couldn’t see a way to live like my friends and not feel isolated by my T1D diagnosis. I know that I was not alone in my reaction to my chronic illness and my family and I owe a great deal to my fantastic consultant who worked hard to help minimise what often felt like insurmountable differences as I went through those troubled years. With time and support, untitledI did eventually come to terms with my diagnosis, though sadly my determination to get my T1D control back on an even keel brought with it an unexpected complication with my eyes, which in turn has led to even more serious implications than I could ever have imagined when I was 13 and feeling very much on my own in a battle against the rest of the outside world.

Move forward a few years and I found myself back in the mental health fight when I was diagnosed with post-natal depression following the difficult pregnancy and early arrival of M. This time I was more open to receiving help and my diagnosis, when it came, proved a huge relief as I didn’t have to actively speak out and ask for that support. Having struggled with counselling as a sole answer to my depression as a teenager, I readily accepted the suggestion from my GP that I be prescribed with low-level anti-depressants for the first few months and am not ashamed to say that those helped me through some very dark times indeed. Anti-depressants are not for everyone, just as much as counselling hasn’t always proved to be a success for me. There should be no stigma attached to needing that medicine to survive the battering of a mental health problem. It is a necessity for some, just as insulin keeps me alive or a feeding tube and elemental feed proved to be what M needed to help him regain better health.

I have learned over the years to identify when I start to feel a little low and my ability to cope with the everyday becomes more of a strain. Mike and my Mum have developed their own sixth sense to pick up when I am beginning to struggle and offer me their unfailing support as I try to find my way back out of the pit. Our 7 year journey to get an initial diagnosis for M and the ongoing challenges in keeping him fit and well have taken their toll and there have been times when tempers are frayed and relationships fractured because of it. 1-in-3-traumatic-event-wmhdThat strong support network of family and friends who are constantly surrounding me is invaluable and the knowledge of what is really important – M and G – keeps me getting out from under the duvet every morning and making my way through each day.

Even more importantly, my own experiences with chronic illness mean that I am well-tuned to the impact that his own diagnosis will have on M. It is a frightening reality to face that your own child might end up fighting the same demons that you did at that age, but it also gives me an insight that lends a level of trust and understanding between M and me that is unlike the relationship he has with anyone else. I can fully empathise when life seems unfair and unjust and he can allow his emotions to pour out because he believes that I get it. We have long been arguing for psychological support for M and finally, thanks to a developing shared care relationship with our local hospital, that seems to be being put in place. Our new gastro consultant has fully acknowledged that the EGID diagnosis will have not only shaped the person M has become, but also had an effect on G and on our family dynamics. He wants to adopt a holistic approach to treating M and the next few weeks will tell if that is a solution that will make a significant difference going forward. I know that recognising the signs of mental stress now are really important when it comes to M’s ongoing mental health, especially as there can be no denying that he already struggles with mood swings, anxiety and feelings of isolation, not just due to his EGID, but also because of his dyslexia and dyspraxia. Early recognition of those symptoms will help us and the medical professionals find a way to put into place coping mechanisms that will serve him, not just now, but into his adulthood too. He already has a good cohort of friends surrounding and looking for him, but they are young, only 10 years old. Just as with any other child as they grow up, he will learn to distinguish those who will stand by him through thick and thin and those who are just there for the fun times. Most importantly to me, 70300is that he doesn’t feel ashamed or embarrassed by the times when he’s not able to cope emotionally, or mentally, or even physically with the pressures that his diagnoses will have on his life, and that he learns to openly acknowledge them; and that he realises that he’s not on his own in that regard.

Likewise, we can’t ignore the reality that having a chronically ill sibling has a massive impact on G and her mental health too. The Young Carers meetings that she has attended over the last few months have covered the areas of anxiety, facing fears and anger management, which are all inextricably tied up with the role of being a young person caring for another. Those sessions have taught her strategies for dealing with her yo-yoing emotions and provide an outlet for them in a safe and understanding environment. She has made stress balls and relaxation jars to bring home and use as she needs. I hope that the proposed psychology appointments at our local will not only look to support M, but also to help G in her own right as well as us as a family. These are all things you don’t want to even consider that your children might ever need to deal with, but there is no escaping the reality of chronic illness and mental health, and we need to accept our responsibility to help them both. That is the key message of today’s World Mental Health Day – that we all have a role to play in supporting those around us as best we possibly can.black-dog-step-on-you

A Survival Guide For School & Allergies

The end of August always seems to be something of a surprise in our household. We arrive home from our holiday feeling relaxed and calm and then almost immediately face a madcap race to reach the finish line of shoes bought, uniform named, PE kits found and bags packed before school starts. In years past I have also had to make sure provisions are packed, discussions had and medical notes updated for M, but, for the first time ever, this year I wasn’t trying to squeeze in a critical meeting alongside my own new start with a new job. img_11331I know that next year when M moves up to our local secondary school it will be a very different picture, but after 3 years of working with the teaching community at our junior school, and with no major changes to contend with, M was able to start in Year 6 without this over-anxious Mum hovering in the background.

Without a doubt we have been incredibly lucky with the amazing support given by the fantastic teaching staff at our local school, but we have also had more than our fair share of bad experiences and teachers who don’t care in the past and I can well remember the anxieties and hours of meticulous planning that heralded the start of every new school year. The novelty of not having to head into the classroom before the end of M’s first week back has still not worn off and I’m certain that it’s thanks to the hard work that’s been put in on all sides to formulate strategies that meet M’s needs and to develop a strong working relationship between home and school that is reliant on open communication that flows both ways.

Over the last few weeks, there’s be a lot of chatter in the online allergy community about the fears that surround the milestone of starting school and, with over 8 years of “parenting-a-school-child-with-allergies” experience under my belt, I’ve been asked what tips I would give to any parent facing this situation for the first time. In all honesty, M’s first few years at school were difficult and certainly not the positive experience we would have liked. We had to deal with a SENCo, who trivialised his allergies because they “…wouldn’t have to call 999 if he ate something he shouldn’t…” and refused to recognise how important it was to communicate his allergies and health issues to any member of staff dealing with him and not just his class teacher, which led to numerous occasions of him being offered food he couldn’t eat. His teachers lost their focus in teaching him because they felt he already had a lot to cope with with his regular appointments at GOSH and his education suffered as speech impediments, dyslexia and dyspraxia were missed by those who worked with him on a day-to-day basis.

Fast-forward to the start of Year 3 and all our negative experiences became a thing of the past. The year actually began at the end of Year 2, when I met with the Head, SENCo and class teacher of his new school to discuss all of M’s health and educational needs and worked with them to put practical solutions into place before the term started. They understood the value of seeing him as more than just his EGID and food allergies, circle-timebut also knew that his health problems were a big part of his everyday life and couldn’t be ignored. At the end of his first week there, M’s teacher held a circle time in class where she shared about M’s ill-health and restricted diet with his classmates. It was done in such a nurturing and non-confrontational manner that by the end of the session M was willing to answer any question that his new friends had about what they had been told himself and has being doing so ever since.

fabed1The information sheets that I had provided were given to the teachers and, combined with the notes they had taken whilst talking with me, used to draw up a healthcare plan for M that covered all possible situations. His on-going bowel control problems were sensitively handled and a contingency plan put in place to ensure that he always has access to a toilet wherever he is in the school. The HCP was written by the school SENCo and then sent home for my review before being published, shared with the whole teaching team and displayed prominently in the staff-room. Even better, every year since then I have been asked to review and amend his HCP to reflect any medical changes that have happened and the school continue to be sympathetic to his needs.

SAM_1175As for his swap box, it has proved to be an invaluable tool in the classroom setting and is something that is really easy to implement. The idea behind the swap box is a simple one – it contains a selection of safe items, be they edible or non-edible, that can be swapped for those unexpected treats that sometimes come into the classroom to celebrate birthdays or other special events. When M’s swap box came into being, it was filled with a mix of Haribo sweets and the odd Lego minifigure and the choice was his as to what he chose to take. Since going elemental 2 years ago, the box now contains Lego, trading cards and other fun small toys and ensures that M never feels that he is missing out when his friends celebrate. What’s more, his teachers have taken inspiration from it for their own purchases of small gifts at Christmas or the end of term and given him something he can enjoy.

I think the biggest secret to our great experience with our Junior school is communication. The lines of communication are always open and actively work in both directions between home and school through meetings, phone calls, e-mails and the home/school book. The willingness of so many of the school staff to learn to support M to the best of their ability has created a level of trust unlike any other and means that I am ea544311f5697d6334b2df7079ccedf9happy to leave M in their more than capable hands on a daily basis. It is a testament to their dedication to their work that, in the last 3 years, the only things that have caused an extended absence from school have been the annual hospital admissions at GOSH. They have always endeavoured to make sure that M is safe whilst at school and the fact that he was able to attend as normal with both his NG feeding tube and his broken leg is incredible. A truly remarkable relationship has grown over the years between our family and so many of the teachers and is something I really value.

They have also nurtured and encouraged M to talk about his allergies and EGID and have shown continued support as he has become an advocate for educating others about his illness. M has held cake sales, run playground games and created short films explaining the impact his diagnosis has on his life. He has developed a confidence in talking to others and 18 months ago was able to answer the questions asked by members of home-school-connectionevery class in the school. When he left his Infants school, he was a child reluctant to talk about his food allergies or hospital appointments because he was scared of being isolated and bullied because of how different he was to everyone else. These days he has an incredibly strong friendship group who look out for him during school hours and think about him when he’s had to be in hospital, and he never thinks twice to share what’s going on with his friends.

If I had to sum it up, I guess I would say this:

Be open, be honest, be available. Keep communicating and tell them how they can make it better if you need to. Do what you can to help them out and don’t forget to say thank you when they get it right.

Lost in Translation

As Mum to a child with additional health needs, you have to be prepared the minute you venture outside your front door. You don’t just carry with you the medicines, equipment and food items you need to get you through the next few hours relatively unscathed, but also the necessary mental strength to explain your child’s needs to everyone you encounter and ensure that your trip outside of the safe bubble at home goes as smoothly as it possibly can. There are, of course, times when an essential gets left on the kitchen counter and you have to think on your feet and find a solution that will work until you get back home, and, for us, there have been times when, despite the clear explanations given and the seeming comprehension of the waiting staff, mistakes have been made and the children have suffered the consequences of those misunderstandings.

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When you add travelling abroad to the mix, those unavoidable stresses become even more intense and, as an allergy Mum, I can tell you that worries about safe food are right at the top of the list. As you may remember, last year we decided to stay in the UK during that first holiday season with a tube in place and had the most amazing week in Cornwall, where we discovered hidden treasures of restaurants and sight-seeing spots that we are still talking about nearly 12 months on. However, we decided that this year we would venture back to a favourite haunt and visit the Algarve in Portugal, with a few extra days in Lisbon tacked on to the start of our trip. We know the resort of Alvor extremely well, but this will be the first time of visiting with such a restricted diet and I have to confess that nerves have been a little greater as we plan our 10-day stay away from home.

One thing I learned early on in our holiday planning with M was to talk to our airline about taking an extra case filled with whatever medicines or foods we will need whilst we’re away and have had superb experiences with both Easyjet to Portugal and Virgin Atlantic to Florida. These conversations paved the way for our long-haul flight to the USA and we found that both the airport lounge and the airline were able to provide safe meals for M when we gave them a little advance warning, but what happens once we’ve landed abroad, especially in a country where we don’t speak a word of the native language? dictionaryOur back-up plan is our self-catering apartment, which means that there is always somewhere to prepare a simple meal of M’s safe foods without too much trouble, but I do, perhaps selfishly, want a holiday from that daily grind of cooking and be able to enjoy a family meal as we used to do when the children were small. Our previous holidays to Portugal were challenging, but not impossible as M loves fish and seafood which are always readily available, but I worried that the current restrictions might be a demand too far.

Fortunately, there are answers to the anxiety about communicating food allergy requirements in a foreign language and whilst it took a little more effort than originally planned, I got our perfect solution in the end. I started by calling Allergy UK, who offer a fantastic service of providing translation cards which “…feature an allergy alert message, an emergency message and a message for use in restaurants to ensure that your food order is free from the particular allergen that causes your reaction…” and can be ordered in any one of 36 languages to cover 70 different allergens. However, I really wanted a bespoke message detailing M’s current safe foods and unfortunately Allergy UK was not able to tailor their cards accordingly, but they did point me in the direction of the amazing Yellow Cross, a company I had never even heard about until recently.

IMG_0824[1]Thanks to a detailed e-mail conversation with Yellow Cross Director, Jane Harrison, she agreed that it would make far more sense to detail what M can eat, rather than a lengthy list of his many allergens and suggested she spoke to their translator to cost out these personalised cards. We settled on appropriate wording, it was passed to their Portuguese translator and I was quoted a very reasonable £20 for a set of 4 eating out translation cards. I confirmed that we wanted the cards, made payment and in less than a week, the finished credit card-sized cards dropped through our letter box. The cards are printed on card and then carefully laminated to extend their life, and I couldn’t be happier with the finished product. They clearly state the wording I had discussed and agreed with Jane and their service was absolutely faultless. I found Yellow Cross willing to help us with our request and I’m certain that the inclusion of these cards in our travel survival pack will ensure that our Portuguese holiday goes with a swing.

NEAW 2016 – All over for another year

With a blog post a day for the last 7 days as well as daily mini fact updates via my FB page, you’d think that I’d be glad that the EGID awareness week has finally drawn to a close. There is, I admit, a certain relief that the busyness of the week is over and I can at long last pause and take a breath, but just as EGID is a constant presence in M’s life, so raising awareness of it will continue to be an important part of our family’s life. A good friend and fellow EGID Mum has asked me to share her reflections of last week, which I am delighted to do as, as she says in her final line, “Knowledge is important this week and every week.”

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National Eosinophil Awareness Week 2016,

A time to share personal experiences,

Taking time to tell others what it’s like to live with or care for someone with an Eosinophilic Gastrointestinal Disorder (EGID)

Inviting those who have never heard of EGIDs to find out more,

One way to help raise awareness,

Not for self but for others as we are,

All in this together, the EGID community, so,

Let me tell you a little bit about what it’s like to be the mum of a child with EGID.

 

Elevated levels of eosinophils in the gastrointestinal tract are often disorder indicators,

Often this will mean that there will be pain and possibly inflammation,

Sometimes this will mean that there is a need to exclude foods; sometimes many, sometimes all,

Ige or non-IgE mediated food allergies may also be present, but not always!

Naso-gastric tubes and elemental nutrition may be the only way to manage symptoms,

Often the only option for many is a feeding tube as the body struggles with food proteins,

Pain, discomfort, nausea, altered bowel habits are just a few of the symptoms,

Hospital visits, hospital stays, invasive tests, medications and restricted diets become a part of life,

Illness can be socially restrictive; days, weeks or months may be lost to ‘flares’,

Life can be difficult for those diagnosed with EGIDs.

 

Awareness aids understanding of EGIDs,

Watching what you eat, if you are able to eat, is central to managing symptoms,

Avoiding known triggers, being a food detective, scrutinising labels, are also key skills that need to be developed,

Research is important; finding a cure and raising awareness of what it’s like to live with an EGID,

Education is also key to raising awareness and understanding of the impact of EGIDs,

Networks are central to enabling those with EGIDs to feel supported by those who understand

Eating … when food is the issue, is an issue …,

Support from others; a community of people who understand what it’s like when someone is diagnosed with an EGID is so important,

Societal understanding though will help those with EGIDs to engage more with their communities.

 

We hope for a future where the disorders are better understood, when we don’t have to fight to be heard,

Enabling those with an EGID to share their experiences with others can help this,

Eventually we hope for a cure or better ways to manage the disorders,

Knowledge is important this week and every week; please take a moment to read some of the stories shared by those living with EGIDs.

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

image17How 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:

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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.

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!

Reaching out

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. you-never-know-how-strong-you-are-until-being-strong-is-the-only-choice-you-haveThat 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. social-media-treeMy 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.

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A Birthday* surprise (*cake recipe included!)

11009339_10152614451586123_8225188594845865541_o20140912_225331Six 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.logo-eureka-01

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.

appleswansNow, 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
  1. Put the “solid” coconut oil – it should not be liquid at room temperature – into a bowl and blend until smooth 20150912_185526
  2. Slowly add the icing sugar and vanilla, continuing to beat the mixture 20150912_185815
  3. 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 20150912_190502
  4. 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!
  5. 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!20150912_204048

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

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.

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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. stats

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 19686_830453950379123_8588932072036308849_nyour 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.

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