Tag Archives: NG tube feeding

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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Can I Eat There?

Over the years, Mike and I have tried to nurture a growing passion for good food in both G and M, very much based on our own love of food, eating out and experiences of a variety of culinary delights from around the world. M has become a real foodie and has never been afraid to try something new, be it oysters at age 4 or E028 at age 9! Whether it’s because of the lengthy presence of T1D in my own life, or due to identifying food allergies in G from an early age, we have never been afraid to go into a restaurant and challenge their menu options to make sure there’s food there that we can all eat and enjoy. Not everyone is as confident in making these demands and I frequently see requests for ideas for safe restaurants in the many FB forums that cover the topic of food allergies. These anxious parents trust the experiences of others in the same shoes and appreciate the advice that is so freely and gladly given; but what do they do when there’s no-one else on-line to share their tips or with the knowledge at their fingertips? Up until recently, the answer was probably to wait it out, especially if they were too nervous to step out of their comfort zone and give somewhere a try, but thanks to a fellow allergy Mum, last March an amazing new website was launched to help the allergy world share their experiences and highlight restaurants that really can cater for food allergies.

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Can I Eat There? is the brain child of Nicky Granger, whose young son, Gabriel, lives with 9 severe food allergies. Nicky and her fantastic team, who have an impressive amount of allergy experience between them, have set up a website that gives “…people with food allergies the information they need to make sensible choices about where to eat. Like menus you can filter by allergy. Customer reviews from other people with food allergies. Forums for chatting and sharing experiences and advice. And the opportunity to put your questions and concerns to our expert partners…” – a completely new venture that is unlike anything else I have seen out there and that really answers a growing need.

The premise is simple: the initial search engine on the site allows you to enter your location and then apply any filters you wish from a choice of: allergy, cuisine, rating, dietary or allergy awards, to suit your individual needs. Once these have been selected, the results are brought up, showing all restaurants in your chosen area that meet your requirements. At the most basic level, the restaurants listed will provide information about the restaurant type, the food offered and which food allergies they feel they can cater to. Some will have provided the CIET? team with a more detailed menu as well as full contact details and their website.

What makes this website so fantastic in my opinion, is the ability for users to add their own reviews and experiences of the restaurants listed and give them a star rating for their attitude to catering for food allergies. These reviews are easily accessible under each restaurant’s listing and give the anxious diner an honest review of just how well the restaurant managed to meet someone else’s needs. This really is a unique resource for families living with food allergies and one that I hope will continue to go from strength to strength. The success of the website is, of course, dependent on not only spreading the word that it exists, but also encouraging people to take the time to add their thoughts and reviews about the restaurants they’ve visited, goldstarsespecially if they would recommend them to others or, indeed, warn other food allergy sufferers against going there. Needless to say, as soon as I first heard about CIET?, I contacted Nicky to find out how I could become involved with her new venture and am proud to be one of the allergy ambassadors and partners delighted to be working with CIET? as much as I can. It really is a 5-star website and I wish them every success for the future.

Day 6: Educating those around us

With the growth of the internet and the increasing popularity of social media platforms as well as the plethora of blogs out there that cover a multitude of topics, the world has become a lot smaller and it’s easier to spread the word and work towards greater understanding. Our family has become adept at educating those around us about EGID, a necessity when 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. As a quick aside, try living with anyone who is in the midst of an EGID flare and, bigger picture or not, you’ll understand why we will continue to fight for research into this unquestionably chronic and life-impacting illness. T_2384403_orighe same is true when it comes to feeding tubes as sadly misconceptions are rife and the reasons behind a tube can be as complex and individual as there are stars in the sky. Even with children or adults living with the exact same condition, their symptoms and need for additional nutrition can be vastly different.

Of course, those of us who live with the reality of additional nutritional support and tube-feeding often have the best opportunity to educate those around us about it, but we can’t do it on our own. PINNT (Patients on Intravenous & Nasogastric Nutrition Therapy) here in the UK and the Feeding Tube Awareness Foundation in the USA do an amazing job of supporting families going through nutrition therapy, be that newcomers to the world of tube-feeding or those who’ve been doing it for years. They also provide tools and advice that can be effectively used to educate the outside world about the reasons behind this treatment and how to give easy-to-understand answers to the most difficult of questions.

Last year, M made a video for National Eosinophilic Awareness Week, which he used to help teach his classmates and the wider school not just about EGID, but also about his tube and, to be perfectly honest, I couldn’t think of a better way to help educate my community than sharing it once again:

Day 5: But who supports the supporters?

Family on Blackboard-webWhen you are tube-fed, I think it’s only natural to expect the support of your nearest and dearest, especially in the case of the tube-fed child. In a recent interview about her MS diagnosis, actress Jamie-Lynn Sigler from the US TV show “The Sopranos” said that “when one person in the family has a chronic illness, the whole family has it.” and this really resonated with me. M, I hope, has never needed to question the unfailing and unconditional support that Mike and I will give him along every step of his journey, but it’s not just us who have walked that way with him over the last 12 months. Without any say in the matter, G has been dragged along for the ride too and has been a great comfort and support to M when it matters most, arguments and fallings-out aside. I have talked before about the amazing community that surrounds our family, but G has been something of an unsung hero in the story. Over the last few years we have seen her struggle to cope with the reality of having a chronically ill brother, which has manifested itself in behaviour and attitudes that are less than ideal and which need love and understanding in the most testing of times. We work hard to try to give G as much time as we can, but sometimes that can’t be as much as we’d want, especially when going through a particularly tough time with M. Sometimes siblings need more time than the parents can find, so who is it that can help parents support these young supporters?

Many people will have heard of Young Carers projects, but perhaps will not realise how massive and vital a role these groups can play in families dealing with chronic illness. Young carers are defined as “children and young people who often take on practical and/or emotional caring responsibilities that would normally be expected of an adult.” Being a young carer is an isolating experience as the child may be reluctant to discuss their home life with friends at school for fear of bullying and will often feel that they are in a unique situation. imagesYoung Carers groups try to meet on a regular basis to give the youngsters a much-needed break from the day-to-day, the opportunity to meet other young carers who will truly understand the pressures and strains they are under and the chance to have fun and be a child. Depending on the location, and sadly on the funding available, these organisations may offer evening clubs, weekends away, days out and even holidays as well as friendly advice, information and counselling to both the young carer and their family. In our area, there is also a school worker who runs lunchtime clubs at some of the local secondary schools, hold awareness assemblies and will act as an advocate for the child if needed.

Frequently these youngsters don’t identify themselves in the role of a young carer and it came as no surprise to me that G didn’t as I certainly had never really thought about her in terms of being a young carer until fairly recently. Thanks to a well-placed poster, a stray comment at school and some gentle prodding from a fab EGID friend, I contacted our local Young Carers group, filled in their referral document and sent it off with my fingers tightly crossed that something helpful would come from it. With the most amazing coincidental timing, at almost the same time that I was waiting for a reply, G had spotted a poster in the Year 7 canteen, took a photo on her phone and showed it to me, asking if I thought this was something that she could find out more about. Delighted that she was interested in this support and wanting to encourage her to investigate the opportunity under her own steam too, I agreed that she should contact the teacher named and see what further information she would be given from within school. P1000101She and a close friend in a not-too-dissimilar position have since met with this teacher a couple of times and have been given more information about our local young carers group as well as a list of useful contact names and numbers.

We also had a positive response from my referral form and last week G and I met with Hannah, one of the Young Carers team. She was with us for about an hour and talked to G about all things Young Carers. Having established that G understood what was meant by the term “young carer”, Hannah then took the time to explain how G fit into that role and then they discussed at length just how G helps M and the rest of the family and how she feels about it. I stayed in the kitchen the whole time, but switched between sitting at the table with them and carrying on with preparing feeds, meds, packed lunches and dinner in order to give G the chance to open up about her feelings. I reassured her that we wanted her to be 100% honest about the emotional impact that M’s illness has on her and was pleased to hear her being just that. Nothing she said surprised me in the slightest and I found it a relief to see her open to the idea of the Young Carers groups and all they can offer. She is keen to get started as soon as possible and is just waiting for the paperwork to be processed and the invitation to drop onto the doormat Hogwarts-style!

I am fascinated and pleased to see that there is an increasing awareness worldwide of the lasting impact of chronically ill siblings on children and the need to seek ways to effectively support them as they grow up, often in the shadow of the sick child. Last year I became aware of another fantastic project, this time by Australian photographer, Alexandrena Parker and Rare Voices Australia, entitled The Forgotten Ones, which sought to highlight this aspect of the rare disease community and unsung-hero-greport…to celebrate and recognise the unspoken and often forgotten support that siblings provide to loved ones suffering.” This is just one person’s small step to make a difference to these unfailing supporters, but with the help of projects like The Forgotten Ones and Young Carers, we can all help support our sick children and their unsung heroes.

 

*The wonderful charity, Over the Wall, also provides respite camps for sick children, their siblings and their families, either all together or separately. You can find out more here.

Day 4: Development, both physical and emotional

The last 12 months have seen many changes in M. Some were the physical ones we were hoping for – improved health, weight gain and his symptoms disappearing – and some were an unexpected bonus on an emotional level. When I offered to write the article for PINNT, it was important for me to discuss with M whether he was happy for me to talk openly and honestly about our experiences. Both he and G know that I have been writing my blog for the last 3 years and are fully aware that I protect their anonymity throughout my writing. This article was going to be something very different as I would be using our real names and providing photos of M to be included in the magazine. To my surprise, not only did he give me the go-ahead, but he also asked if he could jump on the family writing bandwagon and include his own thoughts about his year with a NG-tube. For me this showed a real development in his attitude about his EGID, one that reflected a maturity I had seen growing since the tube was passed in 2014. From producing his video for National Eosinophilic Awareness week last May to the multiple presentations at his school and now this eagerness to share his opinions, M has started to grow up and slowly come to terms with the reality of his life with a chronic illness. This is what he had to say:

Living on EN – The patient’s perspective (child)

My name is M, I’m 9 years old and this Christmas will have had my NG-tube for a year. My Mum and Dad and my doctor made the decision for me to have a tube because so many foods were having to be taken out of my diet because I have EGID (Eosinophilic Gastro-Intestinal Disease) and multiple food allergies. When I first found out that I was going to have a NG-tube, I felt upset because I didn’t think that the tube was 11009339_10152614451586123_8225188594845865541_ogoing to make me feel better and I was very worried that I would be teased at school about it.

The first 8 weeks were very difficult as I felt angry and had several melt-downs as I got used to my tube. Christmas was tough because I couldn’t eat anything and I missed having turkey, Christmas pudding and mince pies. I was jealous that my friends and family were able to eat as I really enjoyed eating lots of foods. When I had my birthday a couple of months later, my Mum made me a special cake out of polystyrene cakes and decorated it to match my Cluedo-themed party. My friends thought it was brilliant and the best thing is I got to keep the cake!

At school, all of my friends are very supportive, they don’t tease me and now don’t seem to notice it. Some say they have even forgotten what I look like without it! 20150710_111650Last summer, my classmates decided to wear a 2.5kg backpack for the morning so that they could understand exactly what I go through each day. The whole class did it as well as our teacher and the other teaching assistants.

Twelve months on, I feel much better both emotionally and health-wise. During the first few weeks I didn’t feel very sure about how I would cope, but now I feel confident about having it in. I would still prefer not to have it, but I don’t mind it so much. The first few tube changes were hard, but I’ve become an expert and can now have my tube changed in less than 5 minutes – I even take my old tube out myself.

If I had to give some advice to another child about to have a tube, I would say don’t worry because it’s not as bad as you think it will be. You can do practically anything with it and it will help you feel a lot better in the long-run. My tube doesn’t stop me doing anything and in the last year I have continued to play my cello, performed in a dance display and have even been given my first modelling job.

Day 3: Nutrition and teaching the experts

Back in November, I offered my help to PINNT to write an article for a nutritional magazine on the subject of being a parent to a tube-fed child. I wanted to share our experiences of the last 12 months and, upon reading the questions asked, I felt it was a real opportunity to reach out and teach the medical professionals who work with families like ours. The potential impact of this article is huge as the magazine has a UK readership of over 13,000 health professionals and is the only nutrition magazine that reaches across the nutrition profession.

magsIn addition to virtually every practising dietician in the UK, it is mailed directly to all senior gastroenterologists, all nutrition nurse specialists and all nutrition pharmacists, as well as lecturers, industry professionals, consultant dieticians and students.

 For day 3 of Feeding Tube Awareness week, I thought I’d include the transcript of my article here:

When did you first learn that your child would need to be nutritionally supported by enteral nutrition?

After four years of increasing food exclusions and a raft of daily medicines, M was still massively symptomatic from his EC and the decision was taken in November 2014 to move him to an elemental feed. His NG tube was passed in early December.

Reflecting back to this stage in your life, what thoughts and emotions were going through your head?

The possibility of a move to enteral feeding had been on my radar for over a year and I had become increasingly certain that it was the best way to try to ease the ongoing symptoms and pain that he was experiencing. The heartbreak of holding my sobbing child at 3am, with tears streaming down my own face, as I struggled to find the words to bring him the comfort that nothing else could bring at that moment in time, had left me willing to try anything to ease his pain.

It took Mike longer to come to terms with the prospect of feeding M via a tube, but by the time we agreed with his consultant that we needed to give it a go, we both felt that it was the chance to give M and his body some much-needed relief. The short-term plans we’d been following for the past three years had been all well and good, but we now needed a longer-term care plan put into place as we just couldn’t keep limping from one appointment to the next with different problems constantly cropping up and nothing really being resolved. The consultant warned us that the enteral nutrition might not be the answer we were looking for, but we were desperate enough to still want to try it and stubborn enough to believe it would be what M needed.

At the time of your child commencing on enteral nutrition, what support and information where you provided with from health professionals, and did you feel this support and information was enough?

AdviceWe weren’t provided with any information about enteral feeding beforehand from the health professionals involved in M’s care and I found most of our information came from online support groups, such as PINNT and FABED. Disappointingly, we then had very limited support from the hospital as the dietician and consultant were both keen to get him discharged as soon as possible and ignored my concerns that we had no local support from our home hospital. Fortunately the nursing staff helped me fight his corner and made sure that both Mike and I were relatively confident in how to manage his tube and work his feeding pump before we went home. M was discharged just 10 days before Christmas and I was really concerned that we would have difficulties accessing any support over the festive period – it was thanks to the wonderful support group parents, the hospital nursing team (who gave me their direct phone number on the ward) and our community nurse that we not only survived, but managed to enjoy Christmas as a family in our own home.

Since being on enteral nutrition what type of long-term care and support has your child received from hospital/community health professional team?

We have a somewhat complex 3-tiered support system in place:

  • The overall plans for his enteral feeding and the slow re-introductions of food into his diet are managed by his consultant and dietician at Great Ormond Street. I speak to his dietician every 3 weeks to review what’s going on and tweak his care; and we see them both every 3-4 months.
  • His tube changes are done every 6-8 weeks at the CIU (Clinical Investigations Unit) at our local hospital, who have listened to his needs and help make the appointments run as smoothly as possible with the involvement of play therapists to help distract him.20141207_124217
  • Our community nurse has helped provide training as needed and is regularly in touch to help and advise as we need.

It may be a somewhat “clunky” approach, but nearly one year on, it’s close to a well-oiled machine and works for us.

How has having a child being fed via enteral nutrition affected your family unit as a whole (thinking about siblings, time in hospital, holidays, etc.)?

Having a child with a chronic illness affects family dynamics and adding enteral feeding to the mix just meant a few additional, albeit significant tweaks for us. The regular hospital appointments do interrupt our daily routine, so I work hard to make sure that life is as stable and as “normal” as possible the rest of the time. M obviously has to take time off school for his appointments, so I try to make sure that he doesn’t miss more than is necessary. I do worry that G gets side-lined at times as our focus so often has to be on M and managing his feeding needs. 20150208_181917We’ve encouraged her to get involved as much as possible and as much as she wants, and she is now very capable of helping with his feeding pump. She’s recently started horse-riding, which is something M doesn’t do and gives me some time to spend just with her. As for our holidays, in the past we often went abroad, but didn’t feel confident enough to try it this first year with his tube. Instead we went to Cornwall this summer, with our car packed full of all the necessary medical equipment and enjoyed an amazing week away. We’re now feeling much more able to cope and are hoping to go to Portugal next summer.

When thinking about nursery/schooling, have you come up against any barriers or obstacles (if applicable)?

The impact of M’s ever-changing health has been particularly profound over 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 not just for G and M, but for the family as a whole. They were willing to have M in school as normal within days of coming home from hospital and 5 members of staff were trained on the intricacies of his tube and feeds so that he could take part in every planned activity with confidence. The positive attitude of the teaching and support staff has also rubbed off on the children and his classmates have been brilliant at accepting his tube at face value and now don’t even seem to see it.

How and when did you first hear about PINNT?

I first became aware of PINNT through the EGID support group, FABED, and other parents of children receiving enteral nutrition, who all recommended PINNT as a great source of support. I then had an invitation to our local PINNT group’s next meeting.support

How has PINNT supported you?

Whilst we were waiting for M to be started on enteral nutrition, I researched and read as much as I could about elemental feeding and NG tubes – most of that information was on the PINNT website and explained it in a really accessible way. I love getting the newsletters and reading about people on all forms of enteral feeding. Similarly Mike has found huge reassurance in learning that there are people out there who have not only lived on enteral feeding for years, but have thrived on it and that moving M to it could be a positive step. It helps knowing that we’re not on our own and that there is always somewhere to get advice and support from those living on enteral nutrition whenever we need it.

If there was one piece of advice you could provide other parents with, who have a child commencing on enteral nutrition, what would this be?

When you first hear that your child needs to start on enteral nutrition, it’s almost inevitable that you will feel a great sense of failure and a huge fear about what the months ahead will bring. It’s so important to remember that enteral feeding doesn’t mean you failed your child, but that their health needs mean they need that extra boost to get them through each day. After nearly a year on his NG-tube, M has become the fun-loving, caring and somewhat cheeky little boy we all knew was hiding somewhere inside him. Feeding him via his tube has become second nature to us and it hasn’t stopped him, or the family, doing anything we’ve wanted to. The best news is that we’ve just enjoyed the most “normal” year of our lives ever.

If there was one recommendation that you could make to health professionals, involved in the care of patients on enteral nutrition, in order to improve patient care, what would this be?

I wrote this impassioned plea to medical professionals in my blog earlier this year and feel it encapsulates what I want to say to all healthcare providers:

For most of us, you are our firefighters and the people we are forced to depend on in our darkest moments. We need you to be strong, focussed and the experts that we are not, BUT we also need you to be gentle, compassionate and understand that you are holding the future of our most precious possessions in your hands. Don’t dismiss our concerns, but believe that we know our children best and have an insight or opinion that is just as valid as your professional one. Don’t belittle our emotions, but be empathetic when they overcome us and when we need a shoulder to cry on more than anything else in that moment. Be honest, but in the kindest way, knowing that your words have the power to break us when we least expect it. Most of all, understand that we are constantly living in fear about our children’s health and life and future, so they don’t have to.

 

pancake*I can’t let today’s post pass without a nodding acknowledgement that it is, in fact, Shrove Tuesday; the day when many of us enjoy a pancake or two before the start of Lent. I can’t even remember whether we managed to eat pancakes last year as M had only just started to trial foods after his 8 weeks on E028, but there’s a sneaking recollection that maybe my Mum cooked some for G, whilst the rest of us ignored the day to the best of our ability. I’m excited that this year I will once again be able to cook pancakes for the whole family and, just in case you need an allergy-friendly recipe to cook for your loved one, I’ve got the perfect one here. Enjoy!

 

Day 2: An even more energetic M!

 

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This is one of my favourite images from 2015: our own version of last year’s Feeding Tube Awareness week meme that I adapted using photos of M. Those photos were taken over an 18-months period and by picture 4 you can clearly see the improved colour and fuller cheeks of M’s face now that he was finally getting proper nutrition. After nearly 6 months being fed via his NG-tube, he had gained weight, had improved bowel function and was once again the cheerful, happy-go-lucky child that we had known him to be as a somewhat mischievous toddler.

Over the last 5 years, M’s seemingly unrelenting energy has confounded those surrounding him because M has never given up; has never let his EGID slow him down, even in the darkest moments. He has long since learned the lesson of “grin and bear it” because, quite frankly, the alternatives for him were unthinkable. M is a do-er. yourimageHe loves to run around and be on the go and into everything all of the time. I mean it. M just doesn’t stop, ever. He’s always given 110% to whatever activity he’s doing, even if it meant trying to finish a swimming lesson white as a ghost and with a temperature of 39.5°, or running the magic mile on the first day back at school after a week off vomiting and barely able to move from his bed or the sofa. Whilst you might often find G curled up in a chair or on her bed reading a favourite book, the only time you’re likely to find M doing the same is at 11pm when he’s waiting for me to come to bed before settling down himself, and even then you’re just as likely to find him playing his cello, or perfecting his dance routine, or building with his Lego.

We even managed a trek across Tower Bridge on our travels

We thought we had seen it all, but 2015 showed us just how endless his energy supply could be when he was being fed a balanced, nutritious feed that provided all the calories, vitamins and nutrients his growing body needed. No longer struggling with the anxiety of limited bowel function or working through the relentless chronic pain, M found the energy to achieve so much with his pump pack and feeding tube in place. He walked miles around London on our Shaun the Sheep hunt with no complaint of aching legs; he tackled and beat the challenge of learning to ride his bike unaided; and he continued to participate in the weekly sessions of Stagecoach that he’s loved for years, no longer needing to take regular breaks during the 3 hours training. We’re now 6-weeks into life without a tube once again and none of us knows what the future will bring. His year with the tube might be all that M needs, or we might see the return of it at an as yet undetermined point, but I don’t regret that year, not when I can see the improvements to M’s health and life and energy levels that it brought. His tube was never a barrier to his activity, but rather the boost he needed.

Feeding Tube Awareness Week – Day 1: Choosing to raise awareness

7beb7940ed39bc80ce6cb39710abb740If anyone was going to describe the last decade of my life, the one indisputable conclusion they’d end up reaching is that it’s been anything but boring. Thanks to a pair of children who have thrown more than their fair share of life challenges into the mix, we’ve weathered more storms than I ever believed possible and, for the most-part, we’ve come out the other side still smiling and relatively unscathed. We’ve survived a lot of challenges, met a whole host of amazing people and learned a great deal along the way; and if I had to pick just one lesson that constantly resonates, I’d have to say that we now know to never take things for granted as they can change at the drop of the proverbial hat. Two years ago I wrote about our limited experience with feeding tubes and then, less than a year later, I found myself blogging about my brand new super-tubie. Another year on and the NG-tube has gone for the time-being and the only thing I can say with absolute certainty is that I have no idea if or when it will make a reappearance in M’s life.

The lessons that the last 12 months have taught us all have been huge and I have come to love and hate that feeding tube in equal measure. For the first time in his life, the reality of M’s chronic illness and multiple food allergies was outwardly visible and finally people understood from a glance that there was more to him than initially met the eye. The constant presence of the NG-tube opened up more conversations and opportunities for me than ever before and I’ve been able to share experiences, offer support and educate the wider community about EGID. M and his froggie friendWe all felt the benefits of that visibility to start with and I no longer felt the underlying pressure to defend the true extent of M’s illness and food allergies whilst my outwardly healthy-looking youngster was intent on tearing around practically making a mockery of every problem and pain we said he was suffering.

Of course, the flip-side was that ever-present tube. The one that there was no escaping or avoiding, no matter the event or occasion. Christmas, birthdays, performances and holidays, the tube was M’s constant companion and he became increasingly aware and conscious of the curious glances that were thrown his way by adults and children alike. His wonderful classmates and our village took it in their stride and quickly became so accustomed to it that M was never subjected to a second glance, but the wider world could stare until he disappeared from view. As well as the tube, we had the problems of M’s face reacting to the unavoidable medical tape and it took us several attempts to find a tape that didn’t burn his cheeks. Even when we finally found the best solution for him, at times he was left with red, sore and sensitive skin that only time tube-free could heal.

Looking back, 2015 was a year unlike any other in our family’s life, but I don’t regret a single moment of it. From that difficult decision to place the NG-tube and start M on an elemental diet, we have seen tremendous growth and an improved health that exceeded all our expectations. Most of all, we now have an opportunity to help raise awareness from the standpoint of personal experience and a road well-travelled, something that, believe it or not, I wouldn’t change for the world.

Thank goodness for TGI Fridays!

When you’re an allergy Mum, there is nothing better than finding somewhere your entire family can eat safely when you’re out and about. I spend a lot of my time in the kitchen when I’m at home, tweaking recipes and continually trying to find new, tasty and interesting ways to prepare 5 safe foods for M and sometimes I just want a break from it. We have found some firm favourites amongst the chains, who have not only been able to cook M-friendly food when we were excluding just 7 – remember those days? I just about can – but have also impressed us in the last 12 months too. From old faithfuls such as Pizza Express, Giraffe and Bella Italia, to newcomers Wagamama and Jamie’s Italian, my cup quite literally runneth over! Our holiday to Cornwall last summer led to the discovery of an amazing small independent restaurant who catered for M without hesitation and made all the difference on our first holiday with a tube.

tgiWith the start of a new year, we decided to branch out and challenge yet another popular old friend, TGI Fridays. M has been reluctant to visit this restaurant since he went elemental last year and our first suggested meal out after he was discharged from GOSH fell sadly flat, when he refused to stay there because “..everyone around me will be eating chips Mummy…“. As we had not long had to stop the potato trial due to all his problems in hospital, Mike and I could totally understand and were massively impressed that, at long last, he’d been able to tell us his reasons for not wanting to stay. However, never one to be beaten by a near 10 year-old, I bided my time until we once again headed out for a small bit of sales shopping and decided to treat them to lunch as well. M’s first choice was Wagamama, but an ill-timed fire in their kitchen put pay to that idea and I tentatively suggested TGI Fridays as a potential alternative. Although only a couple more days had passed since our first attempt, M felt a little more able to challenge their menu and we set off on our brand new restaurant adventure.

The first thing on our to-do list was to advise the greeter of our allergy needs as soon as we arrived at the restaurant and asked for a table. I always do this when we eat anywhere new, even when it’s just a new location of one of our known safe restaurants, so that neither child has to go through the stress and embarrassment of discovering they can’t cater for them and having to leave the restaurant. The greeter asked the restaurant manager to come talk to us as this is TGI protocol when dealing with customers with food allergies. We explained M’s dietary requirements and he reassured that they could prepare chicken, apple and cucumber for M, though sadly not any rice as their current rice dish contains a Cajun spice mix which we haven’t trialled with him as yet. With M happy that he would be able to eat, we headed for our table, ready to peruse the choices for the rest of the family.

20160103_160912 (1)For those of you not in the know, TGI Fridays has a separate menu for allergies, which lists the lactose- and gluten-free options readily available. G was delighted to see such a selection of starters that were safe for her and begged to be allowed to try one of those as well as her main course. She opted for the BBQ houmous starter with corn tortilla chips, followed by the Bacon burger with fries from the allergy-friendly children’s menu. Having sorted our little Miss out, we’re turned our attentions to the more knotty problem of young Master M and here I have to say, TGI Fridays came into their own. The manager came to sit with us at the table, armed with a mammoth allergy information folder and cross-referenced every single menu item we were considering for both children to ensure the food would be absolutely safe. He advised us that they used separate chopping boards for the food preparation to avoid cross-contamination risks and showed an in-depth understanding of our requirements which reflected the extensive food safety courses I later found out the restaurant chain insists all their managers attend.

The only potential issue arose when we discussed what oil M’s chicken would be cooked in as the restaurant uses either olive or the more generic “vegetable” oil in their cooking. As we are still limited to rapeseed and coconut oil only, I asked if the chicken could be cooked without oil and the manager went off to see what could be done.20160103_160748 I was impressed to discover that before settling on that as an option, he had actually investigated whether they could get hold of any rapeseed oil from one of the neighbouring restaurants for M’s chicken breast, but had rejected that option when he discovered those restaurants couldn’t guarantee that there was no cross-contamination risk. Instead, the chefs prepared the chicken oil-free and the speed at which it disappeared from M’s plate is a testament to how well prepared and tasty this dish turned out to be. G’s food vanished in similarly quick fashion and Mike and I breathed a huge sigh of relief that our risky restaurant choice proved to be such a success.

*following our visit, I discovered that TGI Fridays also have an impressive allergy menu on-line, which allows you to select the foods you’re avoiding to see what choices you have. This is a great tool to give you an idea whether they can cook for you or not, but nothing beats talking to the restaurant managers themselves.

 

 

What’s in a word

I’ve long been aware that when it comes to understanding M, it really pays to understand how he interprets and sees the world. As for so many who live with chronic illness, M’s life is coloured by his EGID and multiple food allergies, and his view of “normal” is understandably skewed by his daily experiences. Courtesy of katbiggie.comThe sad reality is that M has been living with the symptoms of EC for so long that he doesn’t always realise when something he’s feeling isn’t usual and we have often discovered a symptom months, or even years after it first started to happen. These problems are frequently something we could have helped resolve sooner and it is never clear just how long M has been coping with it on his own.

My first experience of this was when M had his second set of scopes done 2 years ago. The nurse had started him on Klean-prep via a NG-tube and told M to tell her if he started to have reflux whilst it was pumping into him. Reflux was something we hadn’t struggled with since he was a baby and so he didn’t know what she meant. My explanation that he might feel nauseous or have some sickness come up into his mouth was met by a puzzled look, “…but Mummy, I get sick in my mouth all the time, why do I need to tell her if that happens?” He was genuinely perplexed by this request and I was made suddenly aware that there was an awful lot more going on with him than we really knew about.

Strangely, during our latest GOSH admission, that issue with reflux once again raised its ugly head and yet again, M more or less accepted it as being back in his life without complaint. When we first learned about the reflux, we worked hard to uncover when it was happening most and started him on a daily medicine to help treat the symptoms. We quickly found that it appeared to be triggered when he ate potatoes and raisins and by cutting those from his diet as well as the new medication, the reflux fortunately seemed to ease. The day after we started the potato food challenge in hospital, M complained that he was struggling with some reflux and explained in extremely graphic details to nurses, dietician and registrar what he felt. Whilst they made note of this problem, disappointingly they didn’t do anything to ease the discomfort he was in and delivered that line of “…he just needs to push through this…” that I quickly came to hate. Their dismissive attitude shown so clearly in front of M and obviously picked up on by him despite the illusion of him being absorbed by the TV whilst plugged into his headphones, meant that he stopped mentioning it and the medics assumed that it was a one-off event only.

It wasn’t until they needed to start adding senna to the klean-prep to clear his system that we learned that M had not been 100% open about what was going on. The conversation had turned to whether he would willingly take the senna by mouth or if it was best pushed down his tube, when M casually commented that it didn’t really matter as he would end up tasting it either way. A little gentle prodding by his nurse soon revealed that the reflux had in fact been ongoing since the food challenges began and during that middle week of our stay, he had been experiencing the vile taste of the bowel prep in his mouth on a very regular basis.

This story for me explains why it is so important for the medical teams to understand that every child is an individual and have very different levels of what they can accept and cope with, particularly when it comes to gastro conditions. In M’s case, this means that knowing how to phrase questions and interpret his answers is key to learning more about how he feels, especially when it comes to his coping strategies. For a number of years, Mike and I have repeatedly told our consultant that we firmly believe M lives with a level of pain that he has come to accept as his “normal”. When you see M running around with his friends or experience the whirlwind force of his personality, this can be difficult to believe and the fact that, between my reluctance to allow either child to stay home from school unless they’re dying and M’s determination to be in the midst of everything as much as possible, he has remarkably good school attendance for a child with a chronic illness, is in stark contrast to the picture we’ve tried to paint.

It’s at times like these that the words used with M, and by M, can reveal the most. At one of the many meetings I had with his consultant during our admission, she and I had talked about what the future holds for M. She told me that we might just have to accept that he would need to live with a level of pain that others might consider unacceptable, so that he has a more varied diet to choose from and my words that he already lived with enough pain seemed to fall on deaf ears. It was only when M met with the lovely GOSH gastro psychologist half-way through our stay that he was finally able to talk about how he feels each and every day. Whats-in-a-wordShe quickly established that M differentiates between a “pain” and an “ache”, which meant that unless he was asked the right question, M would proffer surprising answers.

Of course, the truth of the matter is, as we have repeatedly said, M has an almost constant ache in his tummy and bowels that he has just accepted as part of his reality. He doesn’t call that “pain” and, perhaps because of my unwillingness to unnecessarily dope him up on Calpol at the drop of hat, he doesn’t expect to have anything more than a hot water bottle or wheat bag to treat that discomfort. M calls that an “ache” and when asked to rate how that feels, he cheerily announced it was usually around a 4, the level where they would start to offer pain relief on ward. So when he was asked by the nursing team if he was suffering any “pain”, his answer was almost always a no except when he was experiencing a severe tummy cramp – his definition of what a “pain” was. The nurses had been struggling to understand how he could be rating his pain at an 8 or 9 at one point, only to say less than 5 minutes later that he had no pain at all before they’d even had time to give him any pain relief. This insight into the workings of M’s mind was invaluable as it meant that finally we all – doctors, parents and M himself – were singing from the same hymn sheet and receiving accurate feedback from M about how he was feeling; and all because we now understood the power in a word.