Tag Archives: EGID

Dear BBC Controller

Sometimes something happens that leaves me lost for words.

Having heard the furore on Facebook from fellow EGID parents, Mike and I sat down last night to watch Tuesday’s episode of “Holby City” on the I-player.  To say that I was speechless as the drama unfolded would be an under-statement; to say that by the end I was fuming would be a gross denial of the feelings that it had caused.  My hackles started to rise from the moment we were introduced to the character later described acerbically as “Mr Allergies” and we both sat in stunned disbelief as the storyline ended with everything being cured by a rapid diagnosis and a special injection.

For those of you who aren’t Holby City fans, or who didn’t have the misfortune to catch it when it aired on Tuesday night, let me give you a quick precis.  A young man, portrayed from the start as little more than a time-waster and with a list of allergies as long as your arm, is admitted into the hospital.  Nobody can pinpoint what’s wrong, but the doctor in charge of his care recognises that his symptoms fit with EGID.  She performs that little-known-as-highly-reliable diagnosing tool of an ultrasound (!) to rule out Crohns disease and Diverticulitis and comes to the conclusion that it could possibly be EGID, but is more likely to be a mental health issue due to him craving being a “rare” individual and the attention that obviously affords him.  On the basis of all this, and having given him leaflets about planning his own funeral, she tells him it’s a previously unidentified trapped nerve, gives him an injection and within minutes he’s up on his feet, completely cured and feeling better than he has in years.

If only M’s life were that simple.  If only a simple injection could take away the pain and acute discomfort that M struggles with on a daily basis.  If only I could tell him that the magic wand we both are longing for has finally appeared and all his hurt and frustration and despair will be gone, just like that.  If only it was likely that since he was small, my distraught 8 year-old has been craving nothing more than extra attention by being a medical rarity.  If only I’d known that it was all in his mind, or, more likely, all in mine as I’ve known from babyhood that there was something very wrong.

It has taken 7 years for us to reach a diagnosis, bypassing multiple doctors who thought it nothing more than a bad case of toddler diarrhoea and a somewhat neurotic mother.  Even though we now know his chronic illness by name, lack of funding and research means that we still don’t have any answers and every step taken with GOSH is a step of faith that something will help at some point. Every day I meet with people who have no idea what EGID is and the impact it can have on the family as a whole, let alone on my 8 year old himself.  Most of the medical staff we see have never heard of the illness, do not understand the subtle nuances of this hidden disease and have no idea how much we all need their help.  And we’re not on our own.  There are over 300 other families who look to FABED for support and share the highs and lows of this illness with each other, as we can understand like no outsider can; and that’s just in the UK.

 I’ve done my bit:

I’ve made my complaint known – via Twitter, via Facebook and via the BBC online complaints system – and I’ve written this blog.  BUT the damage is done.  Nothing is going to be able to take away their careless portrayal of EGID to the 5 million who watched Holby City on Tuesday night.  I would love to meet the researchers and writer for Tuesday’s episode to understand who they spoke to and where their information was sourced.  The daily battle that M and other EGID children struggle with bears no ressemblance to what was shown, but sadly that is the viewpoint the public will now hold.  I would love for them to spend time living life in the shoes of an EGID family, even for a day, so they could experience a fraction of the living hell that that life can be at times.  To comprehend the heartbreaking decisions we EGID parents have to make and the challenges of restricted foods, bowel problems, chronic pain and a multitude of daily medicines our babies deal with.  This type of inaccurate and frankly irresponsible representation of a serious illness is not what I associate with the BBC and it is left to parents like me, who have enough daily battles to fight, to raise awareness and voice our concerns.

You can do your bit too:  Just share this blog.  Make your family; friends; colleagues; strangers in the street aware of it and the rare illness that affects children like M and families like mine.  I don’t mind how you do it – RT it; link it to your Facebook page; send it out to your email address list; print it out and pin on noticeboards around your town; or get it emblazoned across the sky – but please do it and help us get our voice heard.

Top Tips for Theme Parks (and some amazing US foods!)

We had an amazing 3 weeks in Florida, even if they do seem now to be a dim and distant memory as we’re back into the routine of school, hospital appointments and work.  Before I file those memories away, however, I want to share some top tips we picked up for when visiting theme parks with children, or with those with a chronic illness, or anyone with food allergies.

  • DISABILITY ACCESS PASS – I was tipped off about these from a lovely lady from my choir and immediately investigated what they were, how to get them and whether M would qualify. Whether you are going to Disney, Universal Studios, Legoland or Seaworld, if any member of your group has a disability or condition that makes a lengthy queue wait a difficult prospect, then you can benefit from these passes. 20140916_182709 The passes allow the holder and their group to effectively bypass the challenge of waiting by giving a return time, which then enables the party to enter the ride via either the exit or the fastpass queue.  To support our request for a pass, I had a doctor’s letter detailing M’s EGID and the associated bowel problems and we were given a pass without problem.  These passes were invaluable as we didn’t have that mid-queue panic of needing to rush off to find a loo!
  • ICED WATER – Don’t spend lots of money on bottled water as you travel around the park.  Instead, pop into the nearest counter-service restaurant or anywhere that serves drinks and ask for a glass of iced water.  Keeping hydrated as you walk around the parks in the hot Floridian sun is important and nothing quenches your thirst like a glass of iced water and it’s somehow even better when it’s free.  Be warned that you may struggle in some places – we could only get ice and no water at Legoland Florida –  but it’s definitely worth the ask.
  • PARK ACTIVITIES – And I don’t just mean the parades, shows and fireworks that everyone knows about.  At Epcot, the kids were given a handset that sent them on a journey around the countries of the World showcase, following clues, completing challenges and seeing some really cool special effects to complete the secret missions set by Phineas and Ferb.  Once that country’s mission was done, we had the option of moving on to another country for another mission or finishing the game then.  20140816_230608In Magic Kingdom, we discovered the delights of the “Sorcerers of the Magic Kingdom“, which was a similar activity to Epcot, but this time saw us collecting cards, defeating well-known Disney villains and finally completing the first level of the game.  M and G loved this so much that we spent an unplanned afternoon back at Magic Kingdom, running around to complete the first level and collect as many cards as we could before we left.  The final activity I’d recommend, and one I’m extremely proud we managed to achieve, was participation in the Jedi Training Academy at Hollywood Studios.  Getting M and G signed up for this involved a very early start to be close to the front of the queue for rope drop, a rush to beat the crowd to the sign-up and absolute focus that that, and nothing else, was our first goal of the day.  The 20 minute session saw them being taught by a Jedi master, before taking on none other than Darth Vader to prove their ability as a young Padawan and their loyalty to the cause.  20140817_152258
  • MAGIC SHOTS – This is something that is specific to WDW, but is definitely a lot of fun.  We had bought a Disney Memory maker package, which allowed our group to have access to any photos taken in park, on rides or in resort by a Disney photographer for one, relatively low price.  PhotoPass_Visiting_Magic_Kingdom_7033012070This automatically gave us easy access to Magic shots, which see Disney characters, amongst other things, to be added to your photograph.  Any Disney photographer not using a tripod can take a magic shot and M and G loved running around, tracking down photographers and asking if they could take a magic shot.  The photographer would pose us and give us instructions for facial expressions before taking the photo and adding it to our memory maker package.  I could then view the images on-line later in the day to see who or what had been added into the photo.  The magic included Tinkerbell, Stitch, Olaf, butterflies and a bunch of Mickey balloons.

Should you be travelling to the USA and come across these delicious treats, I would highly recommend stocking up and enjoying them whilst you can.  G and M loved all of these and the small supplies we brought back home with us are now nearly all gone – must mean another trip to the US soon!

  • Babycakes – these are the most delicious, allergy-friendly cupcakes I have come across and were available in some restaurants in WDW.  20140812_011542Luckily for us, they were included in the dessert options at the Mara restaurant at Animal Kingdom Lodge and we bought enough to see us through our final week spent in St Petersburg.  You can find them at a few other locations across the USA and I would highly recommend searching them out if you’re anywhere nearby!
  • Silk Almond milk drink cartons – these are a great alternative for those who aren’t able to drink either cows’ or soya milk, especially as they come in both vanilla and chocolate flavours.  We discovered them at the local supermarket in St Petersburg and I wish I’d known about them sooner.  M really enjoyed being able to have a chocolate milk with his dinner, especially as G had been having chocolate and vanilla soya milk whilst we were staying in WDW.
  • Enjoy Life cookies & chewy bars – another great hit with M and G, especially the soft-baked cookies.  20140819_034546These were the brand stocked in a lot of the WDW restaurants which meant they could have a pudding with their meals, but we found them easy to buy in the local supermarkets too.  They were such a huge success with my pair that I even brought 3 boxes of cookies home with us – Snickerdoodle, Chocolate Chip and Double Chocolate Brownie.  The chewy bars were equally delicious and G found it hard to choose between the Cocoaloco and Sunbutter Crunch flavours.

To ID or not to ID

With our holiday fast approaching, I’ve been considering whether M needs some form of medical ID to carry on him.  The concept isn’t a new one to me as I’ve had a Medic Alert bracelet for years for my T1D and regularly make sure the information held on file for me is up-to-date.  I’ve not previously felt it necessary to have such a band for M, but with his diagnosis of EGID and an increasing number of medicines and allergies to consider, I finally bit the bullet and decided to investigate what was on the market.  Part of the impetus to my search was seeing one of M’s school friends sporting one at our recent local music festival for his T1D and realising that this would be hugely important for those occasions when M is out and about without me or Mike on hand to explain.

medicalert

Whilst my Medic Alert bracelet works well for me, the biggest problem would inevitably be the amount of information needed for M and I felt that it just wouldn’t accommodate it all.  I needed something that would appeal enough to M for him to be willing to wear it all the time as well as having enough room for me to note his name, DOB, emergency contacts, EGID, 12 medicines and 8 food allergies.  No small feat, but – and I doubt this will come as much of a surprise – there is something out there that does all this with ease.

20140803_200524The wonderful ID Band company has a range I couldn’t fail to be impressed by.  From bracelets to necklaces, sports bands to medical bags and the all important kids range, plus a whole host of “spares”, some of which you wouldn’t have even thought of until the moment you need them, there is pretty much everything you could conceivably want.  As well as the more traditional metal panels that you can get engraved with the exact wording you want, they also offer the product I was looking for – a wristband containing a card ID that you can personalise as necessary and the whole band is completely waterproof.  Cautious as ever, I browsed the site to check there was nothing better available, but kept coming back to this one band in particular.  The card ID was big enough to take all of M’s details, I could buy extra cards for when things change and the sizing was ideal for M’s small wrists.  Even better I could get it in green camo, just the thing to appeal to my small boy.

20140803_200443I placed the order on a Thursday afternoon, with my fingers crossed that it would arrive in time for our holiday and to my astonishment, the parcel dropped through our door the very next day.  I filled the information out and presented it to M, hoping that he would be keen to give it a whirl and not reject it out of sight.  I needn’t have worried – M was desperate to try it on straight away and has been more than happy to wear to his holiday club this week.  Once again, a massive double thumbs up from both children (well G wanted one too to state her allergies) and a hearty recommendation from this very satisfied Mum.

Hay fever

dandelionEvery year I’ve had to cope with Mike’s relentless sneezing and G’s sniffles that signal the start of summer in our household.  I’ve never experienced hay fever (also known as allergic rhinitis) and have to confess to being more than a little fed up with the constant coughing, endless nose-blowing and general spluttering that would accompany every summer day spent outside with my family.  Given the rest of M’s allergies, it was something of a surprise that he’d never suffered with hay fever, but definitely a good one.  Naturally, that equilibrium couldn’t carry on and this year he crashed into the world of hay fever with style.

It all started with yet another bout of croup.  M struggles with croup 2 or 3 times each winter and has done since he was tiny.  We were always told he would “grow out of it” in time, but by the time he’d hit 5 and was still suffering, I began to doubt that it would be something we’d be saying goodbye to any time soon.  Last year I read an interesting medical article about “allergic or spasmodic croup“, which is caused by an allergic reaction to substances such as pollen as well as by acid reflux.  It wasn’t relevant to us at the time of reading, but I filed it away in the back of my mind to be mused on at a future point.  This point came after Mike and the children had been away for the annual Dads and Kids camping weekend and M was coughing that oh-so-distinct seal-like bark, which I remembered had developed at the exact same time last year.  I wasn’t sure what had caused the croup to develop, but the coincidence of timing and the memory of that article made me wonder if we were seeing some sort of allergic reaction manifesting itself in M.

stethoscopeWe popped along to see one of our lovely local GPs and put the question of M’s croup to her.  I wanted to be certain there was no underlying infection that needed to be dealt with and was keen to see what she thought it was.  She listened to M’s chest, heard his cough, took his temperature and reassured me that there was nothing untoward going on. Her opinion was that he was suffering from hay fever (tick to the allergic reaction to pollen) and the croup was being caused by post-nasal drip.  She suggested that we’d not seen many signs of hay fever in M before because he regularly takes antihistamines to help manage his EGID, but this year’s particularly high pollen count was too much for those medicines to manage.

M received yet another prescription, this time for a nasal spray to help with the hay fever and I have to say that within days of taking it, his croup cleared up and has yet to return.  So, M appears to have joined the ranks of hay fever sufferers in the family and I’m happy remaining the odd one out on this occasion!

Holiday planning

countdownIt’s that time of year when months, weeks or maybe just days of frantic planning come to fruition and families across the UK enjoy a week or two away from it all.  Whether it’s time in the sun, travels to far-flung shores or even just a few days experiencing something new in the UK, most of us wouldn’t think much beyond making travel arrangements, booking somewhere to lay our heads and throwing the essentials into a bag.  For years my saving grace was the thought that, insulin aside, if I had forgotten anything else even vaguely important, as long as we had money, we could pop to the shops to find a replacement.

Once you have children with chronic illnesses or food allergies, everything suddenly becomes that tiny bit more difficult.  No longer can you risk forgetting any part of the equipment or medicines you need to get your child through each day.  No longer can you assume that you will be able to get hold of the gluten-, dairy- or any other allergen-free food that your child needs to remain healthy.  And you have to consider what you would do if any one of your “what if” worst case scenarios was to actually happen.  With all of these things to complicate what should be a fun and relaxing time away from home, it’s no wonder that many families living with chronic illness choose to holiday at home, or within reasonable spitting distance, so that many of those concerns are alleviated.

Whether you consider it courageous or complete and utter madness, we’ve never been a family to stay close to home.  Mike and I both love travelling and have chosen to nuture a similar passion and willingness to explore the unknown in our children.  Part of that has no doubt been fuelled by our want to go back to Canada regularly to visit family and friends and over the last couple of years we’ve developed strategies to help us cope with travelling with M.  I carry doctors letters and copy prescriptions for both M and me in with our passports and last year discovered that we’re entitled to ask for additional luggage allowance to carry all of M’s medicines and foods with us free of charge.

walt-disney-mickey-mouseWith all this in mind, and our plans for this year’s holiday well under way, I contacted our travel company and airline to discuss our needs.  This year is our “holiday of a lifetime” as we are going to Florida to enjoy all things Disney and Universal before spending a relaxing week on the beach in St Petersburg and I want it to be as straightforward as it possibly can be given the challenges of EGID and multiple food allergies.  Planning for this trip started months ago and I had drawn up a list of things I wanted to find out to make our holiday as stress-free as possible.  My first set of questions was all to do with our flight out and I contacted the Virgin Atlantic Special Assistance team to talk over our needs.  I was quickly reassured that, as before, we could carry all of M’s medicines and foods in an extra suitcase and was advised to make sure I had copy prescriptions and doctors letters with me to make our security experience as smooth as possible.  They’ve also added a note to M’s booking to make it clear to all staff that we are entitled to carry extra luggage free of charge for medical reasons.  A big tick there that there will be no problems carrying M’s medical supplies.

Next the small matter of M’s in-flight meal.  I couldn’t imagine that any of the special meals on offer were going to avoid the wide range of allergens we needed them to, but again the Special Assistance team were able to help.  I sent an email with a full list of the foods M can’t eat and then followed it up with a phone-call.  The lady I spoke to agreed that it would be difficult to accommodate him with their standard meals, but asked what, if anything, would suit him.

Plain chicken and rice,” said I, “with no butter or sauces added and a few vegetables on the side.”

Leave it with me,” she said.

A couple of hours later an email popped into my inbox.  “I’ve spoken to the catering staff and they will make plain chicken and rice as requested for M for the flight.  I’ve passed on a complete list of his allergies for their reference, so please let us know if anything changes between now and your flight.  I’ve added all this information to your booking.”  I was amazed at just how easy adapting a meal to suit M was, but because I’m something of a worrier, I gave VA a quick call last week to confirm everything was okay for the meals.  “Yes absolutely.” said the man I spoke to this time round.  “I can see this meal marked on M’s booking and this list of foods to avoid.  Is that all correct?”  They’d even had the sense to annotate the return flight too, so I can be confident that M will be eating something safe in both directions.  They also suggested we carry a supply of safe snacks in our hand luggage (another extra bag could be carried free of charge if it was necessary), so that M won’t go hungry during the flights.

vroom_header_tcm4-588081The final element was our booking in the V-room airport lounge before we make our flight.  A complete breakfast menu is available to us, but scanning my eyes down the list of food, I could see that there was little on there that would be safe for either child, though G had a few more options than M.  This time I contacted Virgin Holidays as they run the airport lounges and asked what our options were.  I was given a list of foods that are M-friendly and advised to ask to speak to the chef when we arrive at the lounge to discuss what M would like for his breakfast.  They stock gluten-free foods as a matter of course and whilst they had soya milk as an alternative for dairy, this wouldn’t suit M.  Once again I was told that this wasn’t a problem and was hugely impressed to receive a follow-up email telling me that the chef of the V-room had contacted their suppliers and would get in some rice milk just for M on the day of our flight.  What more could an allergy-Mummy ask for?

fingerscrossed

Of course, there are no guarantees that any of this will work out as planned and I am cautious enough to be taking supplies sufficient to meet our needs as we make the trip to the US.  I will, naturally, let you all know how it goes once we’ve made our flight!

A Grand Day Out

granddayoutIf 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.

20140705_164656This 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.

20140705_161022

20140705_105949We 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!

20140705_112530So, 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.

20140705_113143

 

Musical interlude

Music expresses that which cannot be put into words and that which cannot remain silent

                                                                                                                             – Victor Hugo   

Everybody needs a release for the stresses and strains of day-to-day living.  For some it may be sitting down in front of the television with a large glass of something cold, for others it could be something more active to challenge the body to see just what they can achieve.  For me, there are three things guaranteed to lighten my load:  a good book; a successful bake; and music.

piano

For as long as I can remember, music has been a huge part of my life.  When I was growing up, my parents always said they knew when I was finding life tough because the music would slowly disappear from my daily routine.  I would no longer sit at the piano and sing, until eventually that dark cloud would pass and I could let the music back in.  It is amazing to me how certain songs or tunes can evoke powerful memories and the emotions come rushing back.

clarient These days, whilst the piano sits proudly in our sitting room as an important member of our family that I cannot imagine being without, I rarely find the time to bash out a tune or two.  All too often, I find myself surrounded by small children who want to play alongside me, but who don’t have the patience to allow Mummy to teach them the basics.  However, despite a certain reluctance to put in much practice at home, both G and M have chosen celloto learn instruments to play.  We were recently treated to the school summer music concert, which saw both children playing solo pieces, though I’d be hard-pressed to say who had the greater look of concentration on their face – G with her clarinet or M with his cello.

I am delighted that both G and M love to have music in their lives, a fact that I like to attribute to my incessant playing of specially selected compilation albums during both of my pregnancies.  They both listen to CDs at night to help them settle to sleep and we almost always have a CD playing in the car, even for the shortest of journeys.  I maintain that there is a song for every occasion and have been known to coax M out of the darkest of moods by my rendition of any song that springs to mind, often with a slight change to the lyrics to suit the situation.

My biggest musical passion is, and always has been, singing.  Over the years I have had the opportunity and privilege to sing with some wonderfully talented musicians, from my competition-winning school choir to the history-making Cathedral choir and many more along the way.  I have sung with women-only choirs as well as mixed voices and have had the heady experience of performing on my own in addition to singing with groups that have varied in size from less than 10 to over 200.

choir

My current choir is a wonderful group of anywhere between 10 and 20 ladies, who meet weekly to share our love of music.  Each Tuesday I abandon Mike and the children for an hour’s worth of music, laughter and the most amazing friendships I could imagine.  This group of ladies bring a smile to my face without fail and this week’s rehearsal found me giggling so hard that I couldn’t get any semblance of a note out of my mouth.  I was transported away from the week’s dramas with M and instead could just enjoy some time without that pressure overwhelming me.  No matter what the song, we have a great time and it’s been a pleasure to see the choir grow over the last couple of years.  Sometimes the lyrics of the songs really strike a chord and help me express something I had no idea how else to explain.  At our recent concert, one of the other choirs performing sang the song “There’s a hero” by Billy Gilman which really spoke to me of our journey with M and how I feel about our family.  If you don’t know this song, you can listen to it here.

 

 

The Battle is won

battleThis 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.

champagneIt 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.

 

Back to basics

I’ve noticed that recently a lot of my blog posts have highlighted the challenges we have with feeding M and our inevitable focus on home cooking to manage his dietary needs.  It’s not that his EGID diagnosis has disappeared or changed as there is a lot going on in the background that I’ve yet to find the words to express, but rather that his food is a primary focus in his life right now.  The children and I have been talking a lot about them becoming more involved in the kitchen at home and learning a few simple recipes that they will eventually be able to prepare by and for themselves.  I really feel that this is a crucial skill for them both to learn because of their current food allergies and the need to prepare meals from scratch to avoid unwanted reactions.

basketI still remember the joys of Home Economics at school – arriving at school once a week, weighed down by not only my school bag and books, but also a basket containing all the necessary ingredients and paraphernalia needed for that day’s recipe.  I don’t remember many of the meals I lovingly attempted in class, though I have a vivid recollection of the challenge of recreating Shakespeare’s Globe theatre from food following a school trip to Stratford-upon-Avon!

These days learning to cook, even the basics, appears to be gradually dropping off the National Curriculum here in the UK, unless chosen specifically by the child as a subject for more in-depth study.  Recent news reports have commented on the increasing trends of young people unable to identify fruits and vegetables on sight, showing a lack of understanding of how diet impacts on their health and unable to cook even a simple meal for themselves and their families.  The huge increase in availability of ready-cook meals and the emergence of the handy microwave means that many of the younger generations have no idea of how to prepare a balanced, nutritious and delicious meal from scratch.  There is a widely-held belief that cooking from scratch requires long hours of hard labour, which makes it untenable for anyone who works full-time; but I know that just isn’t so.

microwaveI almost always cook from scratch and not just because of the complex nature of M’s diet. I enjoy the experience of creating a meal from a few ingredients and find it a great way to release tension at the end of a long day in the office.  Don’t get me wrong, I wholeheartedly believe that there are times when nothing can beat a prepared dish that simply requires a few pokes with a fork and less than 10 minutes waiting for that “ping” to indicate that dinner is served, but I do think that there’s nothing better than an honest home-cooked meal to finish the day.  There are times when I don’t want to cook, especially if the children are being particularly trying and there is nothing more disheartening than having your hard work pushed around the plate before the child in question – usually G – states that “they’ve had enough” and “please may they get down from the table”; but I hold firm in my statement that the highs definitely outweigh the lows most of the time.

junior masterchef

I don’t know how much cooking G and M will be taught during their school life and so we have gently embarked on some home cooking lessons instead.  The meals we cook might not set the culinary world alight right now, but I hope that, with a little perseverance and a lot of practice, I’ll end up with 2 competent and confident cooks by the time they eventually leave home.  I hope to be able to teach them how to adapt recipes to meet whatever their current dietary requirements without batting an eyelid and show them that we all need to learn to laugh at our mistakes, brush ourselves off and give it another go.  Ultimately, I want 2 children who learn to love food and experience the joys of having that hard work rewarded with a tasty meal and people who enjoy what they’re eating.

And now, the end is here…

Today marks the end of an important week for our family.  It’s been an interesting week of sharing more about life with EGID with friends and colleagues as well as reminding ourselves of just how tough it can be to follow M’s restricted diet.  I’m not usually a snacker, but this week, perhaps because it hasn’t been easy to just go to the cupboard and grab a handful of whatever I’ve fancied, I’ve wanted to snack at the drop of the hat.  Even with our cupboards and fridge full of M-friendly foods, the options for breakfasts, lunches and snacks are incredibly limited and I’ve found myself returning to the same things, time and time again because there really is no choice.

This week, a fellow EGID and FABED Mum put together this amazing video to mark National Eosinophil Awareness Week, which includes some of the brave children we’ve had the privilege of getting to know during our journey to get a diagnosis for M.  Some of you may already have seen it – the statistics suggest it has already been viewed over 9,000 time through the social media – but take a look again: these are the faces of children and families who battle EGID on a daily basis. These are children like M and families like ours:

http://www.youtube.com/watch?v=avLT99NWX64

One day left to go in our mission to “eat like M” for the week and perhaps the hardest food challenge of all…a BBQ social at a friend’s house!

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)