Tag Archives: GOSH

A Grand Day Out

If you’re a sports fan, then last weekend was the weekend for you: Wimbledon finals, the Tour de France in Yorkshire, World Cup quarter-finals and the Formula 1 British Grand Prix. Under normal circumstances, I’d be trying to grab glimpses of the tennis whilst dealing with the never-ending demands of homework and food, admist the cries of “Do we have to watch the tennis?” from G and M. This year however, saw a break from the norm and instead Saturday found me browsing the shelves of Milton Keynes’ library on my own as Mike and the children spent the day at Silverstone.

This amazing opportunity to watch the qualifying races for the British Grand Prix was thanks to the GOSH events and charity team, who work with Bernie Ecclestone and his team at Silverstone to fundraise for the hospital. They have been working together to raise much needed money for 10 years, raising a whopping £4million for the hospital. Each year they offer 30 GOSH patients and their families the chance to visit the race track over the 3 days of the Grand Prix event.

I first heard about the event on Twitter, where 140 characters offered parents and family of GOSH patients the opportunity to contact the charity’s office and apply for tickets for the event. I wasn’t convinced we’d get the tickets given there must be hundreds of children who’d love to attend, but I came to the conclusion that there was nothing to be lost in making the application. I filled the form in, contacted M’s gastro team to ask for an email supporting our request and confirming that he was fit and well enough to attend the day and emailed the completed form back in with my fingers tightly crossed. I hoped we might have a good chance as M said he wanted to go on the Saturday as 1) he wouldn’t miss school on the Friday and 2) he didn’t want to go on race day itself as we weren’t sure whether there’d be as much to do during the day.

We didn’t have long to wait and were delighted when Mike got the phone-call to say the application had been successful and 3 tickets for the Saturday were ours. M was very excited to be going and the opportunity couldn’t have come at a better time for him as he’s been struggling with some big flare-ups from the EGID recently as well as the introduction of 3 new medicines to his daily regime, which has been challenging for us all. The day had become a real focus for him and he was determined to have a great time there. It was also fantastic to be able to include G in the day out as she rarely benefits from M’s illness and is frequently relegated to second place as we try to deal with him. She was as excited as the boys and I hoped she would enjoy herself as much as I knew Mike would!

So, whilst my lucky trio spent their day meeting the likes of Eddie Jordan, exploring the Paddocks and the garages, polishing a F1 car and experiencing everything that Silverstone had to offer, I spent a quiet day on my own in Milton Keynes. I explored the shops, enjoyed lunch at John Lewis and spent a few idyllic hours peacefully writing my blog and reading in the library. The children have hardly stopped for breath since Saturday, telling me tale after tale about their grand day out and it’s all thanks to the hard work and generosity of those at both Silverstone and GOSH.

The Battle is won

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This has been a surprisingly difficult post to write. I’ve found it challenging to give the details of our progress over the last 4 months following my formal complaint to our local hospital about the poor treatment we received when we were there earlier in the year, without it sounding either overly clinical or emotional beyond belief. I’ve finally resorted to bullet-point format as the steps we’ve taken have been an important part of our journey with M that I want to share, but they don’t need any unnecessary waffle in the re-telling.

24-Feb-2014: Write a formal letter of complaint to the Patient Advice and Liaison Service (PALS) based at our local hospital, giving details of our appointment, what happened whilst we were there and our areas of concern regarding the care they’re refusing to offer to M.

Mar-2014: I also write to our local MP asking for his help in getting local hospital support for M and giving brief details of our poor experiences to date, including a copy of our formal complaint and my blog-posts, so that he has all the relevant facts to hand.

Mar-2014: Receive an acknowledgement of my complaint from the hospital, who advise they are looking into the matter and will send a formal response by the end of April 2014.

Mar-2014: Our MP’s secretary calls from Westminster to express their dismay at learning about our experience and to offer an appointment at his next local surgery to discuss the matter further and to see how he can usefully support us in our quest to get local input for M.

Mar-2014: Receive a copy letter from the General Paediatrician we saw in February giving details of the appointment and what next steps they suggest are followed to help M. Given the date of the letter and the way it is written, it is blatantly obvious that it has been written with my complaint in mind and does little to reassure me that this medic will be fighting M’s corner going forward. The letter stresses that they are concerned about our request for shared care, but that they will refer M to one of the gastro consultants based at our local hospital to see if he will help.

Mar-2014: Same day that we receive the letter from the last doctor, I meet with our MP to seek his advice. He listens with a sympathetic ear and immediately offers to do whatever necessary to ensure M is given the chance to receive local support as well as the care from GOSH. In the light of the letter received, he proposes that we wait to see what the formal response from the local hospital is and whether the referral is successful or not. He also asks that I keep in touch with his secretary and let her know how things progress.

April-2014: A month passes without much movement on either the complaint or the referral front. I contact our GP to ask him to also refer M to the gastro consultant as I am still lacking confidence that the hospital doctor will do a favourable referral given the nature of my complaint. During this wait, we have a planned appointment at GOSH and I am able to discuss with them whether they would support our request for shared care. The gastro team is very supportive of our request and advises that they usually recommend that a general paediatrician is the point of contact locally to avoid any unnecessary conflicts concerning M’s treatment. However, given our local’s apparent reluctance, GOSH agree they will discuss M’s care with anyone in the local hospital.

April-2014: We finally receive a reply from the Chief Exec, offering his apologies for our poor experience as well as giving me their findings about the complaint. He also offers a meeting with both the gastro consultant and a member of the Senior management team at the hospital to see how we can take M’s care forward. There is some confusion as to who will schedule this appointment, but a series of phone-calls on my part and a very helpful admin assistant at their end means that the appointment is finally organised for June.

May-2014: I receive a follow-up email from our MP asking how things are going and reminding me to keep him informed of any changes in our situation. I’m delighted to be able to inform him that we’ll be meeting our local hospital at the beginning of June and agree to let him know how that meeting goes.

June-2014: The day finally arrives and Mike and I head off to our local hospital to meet with members of staff to discuss M’s needs, having left a poorly M with Mum for the duration. Our aim is to get our local to agree to having “shared care” with GOSH, so that we don’t have a repeat episode of our Christmas hell with a M who desperately needed admitting for treatment and nowhere that would take him. The consultant we meet is delightful and we’re thrilled to learn he worked at GOSH for a number of years and, even better, has worked alongside M’s consultant there. He instantly agrees to look after M on a secondary care basis, dealing with our existing issues with recurring constipation/impaction and any emergency situations which may arise. The management team has no choice but to go along with his suggestions and we agree on a system that should work well for us all and will ensure that M gets the very best care at all times. The meeting ends with a follow-up appointment with the consultant 5 days later to deal with the current bout of impaction that M is suffering.

It has not been an easy road to follow and the number of letters, emails, phone-calls and late night discussions that have been flying around is huge – BUT we did it. We’ve got secondary care for M at a local level and a positive way forward for the next few years, which is everything we wanted and which I hadn’t dared to believe was possible. Of course, we still need to see how it all works outs in practice, but the first signs seem positive and we know we’ve got at least one consultant on our, and M’s side.

And now, the end is here…

M’s Daily Bread

Eosinophilic Awareness Week 18th-24th May 2014

Another birthday celebration

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Guess what?

Today marks the first birthday of this blog.

It seems unbelievable that I have spent 12 months writing about our experiences over the last 8 years and sharing our struggles, our successes and more than a few recipes to boot. We’ve had our highs and our lows, but with the support of our family, our friends, medical professionals and other bloggers we know we can keep on going. When I started the blog I wanted to be able to share the story of M’s life and our fight to get a diagnosis for him and the best care and support we could. My aim was to raise awareness of this rare and little known condition and I always said that if I managed to make a difference to just one other person who was living our experiences, then I would be more than happy. Amazingly in the last couple of months, I’ve received kind messages that have told me that I have achieved that goal.

A few statistics to share about the last year:

Date of first post: March 13th 2013
Number of blog posts written: 95
Number of “followers”: 297
Most popular post: To whom it may concern
Total views of that post: 220
Highest number of hits: 165 in one day
Number of recipes shared: 27
Most popular recipe: The best chocolate cake ever
Total number of comments: 218
Total number of views: 7,867

As ever, we’ve no idea what lies ahead for M, for G or for us as a family, but the one thing I do know is that I will continue to share our journey with you and every development as it happens.

Our birthday boy

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Over the past few days, we’ve been celebrating young Master M’s 8th birthday. It’s hard to believe that it’s been that long since he first crashed into our world and whilst the time hasn’t been easy, it certainly has flown past fast. The last 8 years have been filled with a lot of laughs and smiles and it’s exciting to see just how our “little bean” is growing up. Obviously, we’ve had a lot of health worries along the way – this blog wouldn’t exist without them – but those haven’t overshadowed the joy and good times of having M as part of our family.

M has become a little boy with a big personality. Like most other boys of his age, he loves everything Lego, Star Wars and Angry Birds and is a keen member of our local under-8s football team, where he can be found most Saturdays running around the pitch and even occasionally kicking the football. He loves discovering new things and although he’s not the most academic of children, his passion for new facts, knowledge of the world and probing questions have been flummoxing his teachers for years. M does struggle due to his dyslexia and dyspraxia, but the strides he has made since we got the diagnosis last year are amazing and he never lets them stop him being an active participant in class. He enjoys school now more than I ever thought possible and is keen to get there each morning to spend the day with his friends.

He adores his big sister and even though he spends most of his spare time planning new ways to wind her up, he will be the first to leap to her defense or comfort her when she’s upset. He will go off to search for a scrap of her “rag” when she’s in tears, though he will also hide it from her when he’s in one of “those” moods. They love nothing more than playing together in the garden and enjoyed most of the weekend’s sun by washing my car with M’s brand new super-soaker.

Perhaps more unusual is his flair for all things theatrical. M has never been backwards in coming forwards and I have photos of him stepping up to perform karaoke age 4. He loves to perform and is always looking for the next opportunity to do so. His current favourite musical is “Singing in the Rain”, though he’d probably also mention “Lion King”, “Matilda” and “Oliver!” in no particular order. M has a dedicated dressing-up wardrobe and has fancy dress to meet every occasion. No matter what character you’re looking for: be it “Odlaw” from Where’s Wally, “Bert” the chimney sweep from “Mary Poppins” or the “Ringmaster” from “Ninja Meerkats”; I can guarantee that M will have already been there and worn that!

When it comes to coping with his EGID and his diet, M is a trooper. He takes his medicines with the minimum of fuss and accepts the food restraints with relative good humour. He’s not perfect by any stretch of the imagination, far from it, and really struggles at times with frustration and anger that this is his lot in life. Yet he nearly always bounces back and keeps going with a positive attitude. The latest challenge of no potatoes has been one of the hardest M has had to face and he has really found it difficult to accept that he might have to avoid them longer term; but even he has had to agree that things have improved since we whipped them out of mealtimes and is now hoping that our next GOSH appointment will bring a food trial instead.

To celebrate in true style, I once again attempted to bake the double and created 2 cakes for M to enjoy – one for our family dinner and one for him to share with his friends at his party. The first he chose from my cupcake decorating book and the second was inspired by G and M’s current passion for all things “Despicable Me”. It took two long and extremely late nights, but I achieved my goal, was pleased with the results and, more importantly, so was the birthday boy himself.

Local update

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You may remember that back in December, M was referred on an urgent referral to our local hospital based on the advice of GOSH. He was suffering from chronic constipation, was in considerable pain and was losing weight as his appetite decreased. Sadly, our local hospital felt it was unable to admit or treat M and instead our only option was to treat him at home, using a strong laxative and bucket-loads of patience as he struggled to recover his health. Our urgent referral resulted in the offer of an appointment with a general paediatrician in February, nearly 12 weeks after the referral was originally made. We thought long and hard about whether we wanted to take up this appointment or not, given our previous experience with our local hospital, but we knew that local input could make a big difference to all our lives and felt that this could be our way into the local system.

February’s appointment arrived quicker than we could have imagined and we went along with an attitude of “hoping for the best, but expecting the worst”. The symptoms that M was suffering back before Christmas have disappeared and we have had the challenge of changing his diet and his medicines again in an attempt to reach a status quo with the EGID. What we hoped for was a local doctor who would listen to our concerns and who would offer us the helping hand we so desperately need. We wanted a local doctor who could point us in the right direction at the hospital and would support our search for shared care between our local hospital and GOSH for M.

Instead we got a doctor who, through their less-than-professional manner, vocal criticisms of both our GP and GOSH and obvious impatience, left us feeling let down once again. They belittled our decision to seek a second opinion when the local hospital had let us down 3 years ago and were unimpressed that we had our own point of view concerning the care given to M. They reluctantly agreed to refer us on to the gastro team at the hospital, but made it clear that they believed it highly unlikely any of the gastro consultants would willingly take M on a shared care basis with GOSH. Mike and I weren’t surprised, but we were disappointed that this consultant chose to make their opinions known so clearly in front of our impressionable and sensitive 7 year old.

Needless to say, we are not letting things drop there. We have written a letter of complaint to our local hospital and are now waiting for their response to our concerns. I am writing to our MP to make him aware of how badly M is being let down health-wise locally, to see if he will get involved on our behalf. We will persist with the onward referral to one of the gastro consultants because we remain strong in our belief that shared care between our local hospital and GOSH is something M needs; AND we will continue to fight M’s corner to make sure that he is put first and gets the support he needs.

“Nothing can hold us back”

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This week is “Feeding Tube Awareness Week” and a great opportunity to raise awareness and garner support for those brave children and young people who are currently living with a tube to provide essential nutrition. Their motto for the week is “Nothing can hold us back” and for many a feeding tube allows them to take precious steps forward. There are a number of different feeding tubes that can be used: NG-tubes, NJ-tubes and TPN to name just a few, and you can find out more information about all of these from The Feeding Tube Awareness Foundation here. The reasons for a feeding tube are even more varied then the number of tubes available and can include premature birth, EGID, Cerebral Palsy and over 200 other conditions and diseases.

As well as the initial trauma of facing the decision to start your child on tube-feeding and the challenge of placing the tube, families then have to learn all about giving feeds, looking after the tubes, replacing them when necessary and how to deal with the little complications that can make a big difference. The prospect of tube-feeding can be a frightening one, but these children are able to go to school, play and participate in after-school activities alongside their peers with the right support given by trained medical staff, friends and family members.

Ms first tube

Whilst our journey so far with M has been tough and continues to throw new challenges at us from time to time, this is one thing that so far we have not had to face. M has had feeding tubes twice – once when he was first born so prematurely at 33 weeks and secondly, for just a week back in October, when he was admitted to GOSH. As I recounted then, it took a while for my brave boy to become accustomed to it and to stop worrying that it might fall out at any moment, but he did. We know that we are extremely lucky as there are a number of EGID children out there who are dependent on a feeding tube to give them the daily nutrition they need.

October 2013 and another tube

The decision to start your child on such a path is a difficult one for any parent to make and there are no guarantees as to just how long that tube might be in place. At the moment some of our wonderful FABED friends are surviving life with a feeding tube, some have finally managed to say goodbye to that tube and others are contemplating whether a tube may be the next step for their child. To all those families, this week is for you and about you and the support and understanding you all deserve.

You can read more first-hand experiences here:

musingssahm.blogspot.co.uk – Feeding Tube Awareness week 2013
musingssahm.blogspot.co.uk – “Wiggling the Wires“
afeedersdigest.wordpress.com – “Why is that pipe up your nose?“
afeedersdigest.wordpress.com – “What the hell is an NG tube and elemental feed?“

New year, New plan

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The first week of 2014 and our first visit of the new year to London and GOSH for a consultation with M’s gastro team. Mike and I had our list of queries drawn up and were determined not to leave without some answers. Topping the list were our concerns as to why M has been struggling so much with chronic constipation since the beginning of last summer. It seems that no sooner have we managed to get his system cleared out, than the problems start all over again and nobody seems able to explain why this is happening in such a relentless manner. My meeting with the wonderful local Bowel and Bladder clinic had given us a proposed plan to follow and I was keen to see if GOSH would jump on board.

Courtesy of telegraph.co.uk

Another on-going worry has been the restricted diet and number of medicines that M is taking and is one that his consultant has shared, especially as he is still symptomatic, which is the worst of all worlds. We work hard with M to keep him going and stick to the daily grind, but he shows more and more reluctance to do so and sometimes the battle is just a step too far for us all. I was keen to know if there was any possibility that we could remove one or two of his 7 daily medicines as we had discussed at our last proper appointment back in May.

Despite his weight loss in October whilst admitted to GOSH, and a further loss during December, M has managed to gain some weight in the last 12 months and is still creeping along his centile line, which keeps the medics happy. This visit’s registrar was pleased to see that he had gained in both height and weight, though he mentioned that he would be happier if M could gain a little more weight in the coming months; a difficult feat when your child eats little other than “thin air” as M himself describes it. We discussed at length the experiences and the numerous phone-calls that I’ve made over the last 8 months. He even agreed that the current situation is less than ideal and supported, in principle, our tentative query as to whether we could drop a medicine or 2.

Courtesy of newharmonywellness.com

BUT – and admit it, you could sense that was coming, couldn’t you? – we can’t lose a medicine just yet. Due to M’s new symptoms, the constant bowel problems swinging between chronic constipation and incessant diarrhoea and the general ill-health he’s been dealing with since the summer, we instead have to introduce new medicines to see if we can get a handle on the situation. We’ve now got 2 more to add to the daily regime: Senokot, which is a stimulant laxative, to help resolve the constipation issue, and Lansoprazole, a PPI to deal with the reflux that we’ve only recently learned M has been living with.

The problem with new medicines is that we can’t stop any of the old ones until we see if there is any improvement in his condition. If we see a change for the better, we need to be certain that it is the new medication that is helping, an issue that would quickly become muddied if we took out any old medicines alongside starting new ones. So, for the next 3 months until our return visit to GOSH, M will be on 9 medicines daily and already he has proved himself to be a real little trooper in his approach to it all. I don’t know that I would be so keen to take so much every day, especially when there are no obvious outward signs that anything is making everything better, but he remains positive and determined to beat this condition and not let it rule his life.

We do have one other thing to do over the next 8 weeks and this resulted from the follow-up conversation with M’s dietitian. She felt that we needed to exclude a couple more foods from M’s diet to try and reduce his symptoms. We agreed to tackle the 2 that he has complained about when suffering from reflux. His description of them making his throat feel as if “…someone has a pin and is pricking my throat and running it down the length of it..” as he swallowed had sounded the alarm with me and the dietitian agreed. So, for the next 8 weeks we are now experimenting with life without potatoes and raisins as well as the already excluded gluten, wheat, dairy, soya, egg and raspberries. Fortunately, M almost always prefers to eat sweet potatoes to the humble spud and so I’m hopeful that, for the most-part, this won’t prove to be too difficult a challenge for us.

The visit to GOSH wasn’t quite as we’d hoped. We’d gone with the dreams of reducing his medicines down to 5 or 6 and came back with the reality of 9 daily medicines and an even more restricted diet. It’s hard to remain positive in the light of such a change, but we continue to strive towards a symptom-free M and will do whatever it takes to get him to that position.

	M	Me	Mike
Breakfast	Bowl of free-from rice pops Maple syrup Rice milk Toast (1/2) Peanut butter	Rice flour toast (2 slices) Peanut butter	Rice flour toast (2 slices) Rice milk
Lunch	Bruschetta made with: 4 slices rice flour toast Tuna, corn, cucumber & egg free mayonnaise Mackarel Apple (1/2) Pear (1/2)	Bruschetta made with: 2 slices rice flour toast Tuna, corn, cucumber & egg free mayonnaise Mackarel Pear (1/2)	Bruschetta made with: 2 slices rice flour toast Tuna, corn, cucumber & egg free mayonnaise Mackarel Apple (1/2) Pear (1/2)
Dinner	Baked sweet potato M&S Venison sausages (2.5) Olives Pistachio nuts Carrot cake cupcake	Sainsburys Free-from sausages (1.5) Sweet potato Salad – lettuce, cucumber, tomato, avocado	Baked sweet potato M&S Venison sausages (3.5) Green salad Banana Nectarine
Snacks	Nakd cocoa orange date bar Fruit buttons (lemon)

	M	Me	Mike
Breakfast	Smoothie (1/2 banana, 5 strawberries, 200mls rice milk)	Orange	Bowl of: Free-from cornflakes Rice milk
Lunch	Sakata rice crackers (4) Free-from spread Fruit string	Sakata rice crackers (6) Cucumber Celery Peanut butter Sliced pear	Left-over chicken casserole and rice
Dinner	4x sweet potato wedges Pork belly slice (1/2) Cucumber Apple (1/3)	Sweet potato wedges Pork belly slices (2) Courgettes Mushrooms	Sweet potato wedges Pork belly slices (2) Courgettes Mushrooms
Snacks	Fruit buttons (blackcurrant) Capri sun orange drink Brazil & Sultana bar (1/2) Rice bread (1 slice)

7 years to diagnosis

Searching for an answer