Tag Archives: dietitian

NEAW 2017 – Living with the unknown

2017 marks our 5th National Eosinophil Awareness Week and yet, in many ways and for many reasons, this year may be one of our quietest yet. One of those reasons is that over the last 12 months, we have experienced a significant shift in the way that M’s doctors view his diagnosis and that change, along with the inevitable amount of growing up that is going on in our household at the moment, means that life has become about a lot more than just the label we’ve been handed to explain his medical condition. I’ll be honest, that transitioning medical opinion has been difficult to live with because it has challenged the very way we’ve coped with the last 11 years of our life and has demanded that we examine closely all of those decisions we’ve made believing them to be in the best interests of both our children and not just M. It has made us sit back and question whether we’ve been choosing and doing the right thing.

This seismic shift that we’ve been experiencing is not isolated to our experiences or even to our part of the world, but rather appears to be part of a nationwide change in the understanding, and even the diagnosis, of Eosinophilic disorders themselves. As a parent to a child with this diagnosis, the prospect of moving away from recognising Eosinophilic Disease as a genuine medical condition is a daunting one. Whatever title you want to attach to this little-recognised health issue, the hard facts are that those diagnosed with it are struggling and suffering on a daily basis and removing the validity of its name does not, and will not, remove the reality of the problem itself. The steps we have taken over the last 4 years since diagnosis have not always been easy ones, but without a shadow of a doubt, they have been ones that have seen much improved health for M at times when we have had to make what are unquestionably the toughest of choices.

Similarly, we are not the only family who has found itself moving away from the care provided by GOSH over the last couple of years – some have moved by choice, whilst others have had little or no say in the matter. In our case, our GOSH consultant and dietitian recommended we sought local input into his care because they had reached a point where they could find no explanation for why his body reacts as it does and felt that a fresh pair of eyes might be able to give us different insight into how to go on from here. The last 8 months have been extremely challenging for us all as our local consultant has made suggestions that we are not always 100% on board with and it has taken unbelievable courage on the part of all in our family to even agree to try new things that no-one really knows will succeed in the long run. The jury is still out on whether we are currently heading in the right direction with his care and truthfully only time will tell whether the decisions we are making this time round are the right ones or not.

Without any funded research into the complexities of gastrointestinal disorders, individuals like M will always be at the mercy of what can only be seen as an experimental approach, as diet, medicines and psychology are discussed and considered and tweaked to produce the best possible outcome on very much a “trial and error” basis. In our experience, we know that food plays a huge part in the way that M’s body behaves and the medicines he’s currently on appear to be doing their job of dampening down the body’s reactions to everything he eats. Likewise, we agree that there is a psychological element to it all and have had our concerns about the psychological impact of a chronic illness on his mental well-being. Sadly, where we have currently agreed to disagree with the medics is whether the psychology plays a bigger part than the physiology when it comes to M’s day-to-day health and responses. Yes, we know that stress can wreak havoc on the digestive system of just about everyone, but we will not be swayed in our belief that it is more than that for M. The hard facts of our 11 years with M show us that his health challenge is unquestionably a physical one and we will continue to fight for greater understanding of Eosinophilic disorders and how they affect everyday living for those diagnosed with them.

This week is about raising awareness of EGID and sharing our experiences – the good, the bad and the ugly – of living with it. For us, and for the families we’ve got to know who live with it, EGID is a part of our lives that we have to accept and learn to come to terms with, no matter what discussion is being had in the medical world. It might not be clear whether EGID is in itself the final diagnosis, or if it is simply part and parcel of a larger problem that is, as yet, unknown, but it is our reality and it shapes every step that we take.

This year we have decided to continue our support of the amazing charity, Over The Wall and their camps. If you’re able to donate even a very small amount, please follow this link to my Virgin Money Giving Page where your donation will help more children living with chronic illness like G and M by giving them and their families a chance to enjoy some much-needed time away from it all.

Why we should value our NHS

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

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

Yet, despite all the lows, the high points mean that I can see there is something truly wonderful to be valued about our NHS. I see it in the regular phone-conversations that happen between M’s dietician and me, so that she can keep an eye on what’s going on from a food point of view and monitor how well he’s managing with drinking his E028 now that the NG-tube is gone. I see it when she takes her concerns to M’s consultant and talks them through and agrees a way forward, so that we don’t have to wait months for our next trek to London for an appointment before we act on the problems we’re experiencing now. I saw it in the care given to both M and me during his admission, when the nurses made sure that his best interests were met as far as possible and offered cups of tea when they were otherwise powerless to help. value-620-320I saw it in the frankness awarded to Mike and I during the December debacle, when we asked for an honest opinion about his future health and what we could expect; and it was given.

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

may-arrows-on-a-wooden-post-and-a-white-sign-for-writing-a-message-D6WY0KThanks to past experience and my somewhat controlling approach to always having a supply of E028 in the house, I started chasing about when we could expect our next delivery whilst there was still a good amount of stock in my dining room and spent the next 40 minutes being pushed from pillar to post as I tried to track down who I needed to speak to and unpick exactly what had happened. When I finally established what I had to do, it was my wonderful GP’s surgery that I turned to and their fantastically competent staff. With the help of 1 receptionist, 1 member of office staff and the invaluable pharmacist, we eventually got M’s prescription sorted and marked as an ongoing monthly medication. They phoned, researched, ploughed through reams of medical notes and faxed until it was all sorted – and all with the attitude that they wanted to help, were willing to help and were happy to help, and a ready smile that reassured me I wasn’t being too much of a problem in their already busy day.

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

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!

 

Our thanks go to…

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

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

Our families – well it was a given really, wasn’t it?  But whichever side of the ocean they may live, our families have been there in whatever way they can 澳大利亚孩子-1202242and supported us in the tricky decision to move M to a NG-tube and the elemental diet.   We don’t know exactly what the next 12 months hold in store for us, but we can be certain that our families will be there every step of the way.

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

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

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

G – the best big sister that M could ever have had.  She’s loved her little brother through some of his darkest moods and, even if there’s a bit too much squabbling at times for my liking, she’s managed to continue to work on building a strong relationship with him that I hope will only get stronger in time.  She’s survived the challenge of SATs, maybe not without the odd tantrum along the way, and continues to strive to do her best at school and at home.  P1000121And my heart nearly burst with pride the other week when she announced at Stagecoach that M is her hero, because of how bravely he lives and copes with EGID.

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

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

Back to work for a rest

take_a_breakI’m sure I’m not the only working parent in the world who gets to the end of the latest school holiday with a sense of it being time to head back to work for a much-needed rest.  The last 2 weeks have been undeniably busy, with a mix of work, play, holiday clubs, hospital appointments and tourist attractions to more than occupy our time.

Surprisingly, the first hospital visit of the Easter holidays was with G, who tumbled from her scooter and ended up with a painful wrist that needed a x-ray.  Despite her best efforts to fracture her left wrist with 4 weeks to go to her SATS, G managed nothing more than a severe sprain, though she has also gained a ban from scooters, trampolines, trees and any form of gymnastics until those exams are done and dusted.  Fortunately G is right-handed, so even these desperate measures didn’t get her out of the revision homework set for her time off school.  We are extremely proud of the effort that she has made with her studies during the holidays as she did some work every day with relatively little fuss and it’s nice to know that the end is finally in sight!

2053064-alpha_flightLess surprisingly, our next 2 hospital visits were both with M.  The first was his scheduled tube change at our local hospital and it went just as smoothly as the last one.  Despite the continued problems we’ve experienced with the gastro team, the nursing team in the CIU (Clinical Investigations Unit) are amazing and have worked hard with us to find an approach to the tube change that makes allowances for M’s anxiety.  The play therapists are on hand straight away to provide a much-needed distraction from all that’s going on by entertaining M with a bubble-popping game on the i-pad or a lengthy discussion about the Canadian Marvel superhero team, Alpha Flight.  Our now-experienced team of Gill and Jo sort us a bed in a quiet area of the unit and encourage M to take some deep breaths of entonox before we even start to discuss the tube change itself.  This time the job was done in an amazing 20 minutes, which included M removing his old tube himself, me counting to 10 in an array of foreign languages and only a fraction of the negotiations we’ve had to endure from M in the past.

622d9490d50f3993393fa0084b4793e8We also spent a few days in London following M’s first outpatient check-up with his GOSH consultant since he had his NG-tube and started the elemental feed.  I’m delighted to announce that, at long last and after an anxious few weeks, M has not only regained his pre-admission weight, but has also managed to put another kilogram on.  Whilst we still haven’t progressed any further than his 3 safe foods, the move to elemental has done exactly what we needed it to and M is unquestionably the healthiest he has ever been in the last 9 years.  The next step is an important one: to find more foods that he can eat without compromising this new-found good health.  We are moving from a pure gastro clinic to a new one for those with “complex food needs”, which will mean he is seen regularly by both his consultant and our specialist dietitian, who will then work together, and with us, to plan the next steps on our new journey.  The future is most definitely bright!