A Chocolate-Lover’s Birthday

Recently someone posted a link to this easy cake recipe on one of the EGID support group forums I belong to on Facebook.  I was soon drawn to its simplicity, not least because it was already dairy-, soya- and egg-free, but also because the comments that followed suggested it could be easily converted to a gluten-free recipe too.  What was even better was that I had the perfect occasion to try the recipe out – my Mum’s birthday.  As you may recall, we had planned a special afternoon tea at the Grand Floridian whilst we were on holiday, but the actual date was now approaching and we had a family lunch booked for the day itself.

chocsI think it would be fair to say that my Mum is an avid chocolate-lover, one might almost say a chocoholic and there used to be a time when you’d be hard pressed to find her without an emergency chocolate bar stashed in her handbag, glove box or on the top shelf of the fridge.  Bearing that in mind, it was something of a no-brainer to decide on a cake that would satisfy her idea of chocolate heaven.  The bigger challenge was in making that creation both deliciously decadent and M-friendly.

20140912_225331I doubled up the quantities in the chocolate crazy cake recipe and chose to mix the ingredients in a bowl, rather than in the cake tins themselves as I wanted to make 3 individual layers to sandwich together.  I replaced the flour with a blend of rice and tapioca flour and added a pinch of xanthum gum to help it on its way.  The cakes that came out of the oven appeared to be beautifully moist and not too granular, although Mike’s first comment on tasting some of the trimmings was that they were a lot sweeter than my usual bakes.  I swirled vanilla butter-cream icing with spoonfuls of Grandma’s strawberry jam (all the way from Canada) and used this to sandwich the layers together.  Lashings of home-made chocolate butter-cream icing then covered the entire cake, before I finished it all off with a generous sprinkle of pearl drops, moo-free chocolate buttons and shavings of moo-free orange chocolate.

It looked like my idea of a chocolate-lover’s dream birthday cake and tasted good too.  My Mum thought adding raspberries would have added a little sharpness to cut through the sweetness of the chocolate, but there wasn’t much left after her meal, which is always a sign of a good bake!

Our fabulous Florida photo round-up

A week filled with appointments right, left and centre has left me with little time to write a full blog-post.  As we process all that’s been said this week, what better way to keep smiling than a photo round-up of our fab time in the Florida sun:

EGID – the real story

I am still reeling from the astounding response to my last blog post, Dear BBC Controller.  When I asked you, my wonderful readers, to share what I had written in a hope of raising some much-needed awareness about EGID, I have to admit to only expecting the odd person to possibly share the link on Facebook with a few of their friends and nothing prepared me for what happened next. From the 20 shares that I know about, that post gathered momentum and I experienced a fantastic demonstration of exactly what social media can do.  Within 48 hours of publication, that blog was viewed by over an amazing 1,800 people across 33 countries and the statistics are still creeping up on a daily basis.  I have been humbled by this response to my plea and I can do nothing more than extend my heartfelt thanks to you all.

One of the things I realised, however, is that I have never given a comprehensive explanation of EGID and that my last blog post may have left new readers wondering what on earth all the fuss was about. Those of you who follow my blog will have an understanding of how this chronic illness impacts our lives and for those who know our family personally, you have probably had a brief explanation of the disease along the way.  In that last blog post I didn’t want to go into the finer details of what exactly EGID is, so now I want to set the record straight, so to speak, and explain in a little more detail M’s condition.

17348-custom-ribbon-magnet-sticker-Eosinophilic+Disorders+++AwarenessEGID, or Eosinophilic Gastro-Intestinal Disorders, are a complex and chronic group of digestive system disorders caused by an abnormally raised level of eosinophils within the gastro-intestinal tract.  Eosinophils are an important type of white blood cell, which normally help the body fight off certain infections and parasites and are typically involved in attacking the causes of allergic reactions, thus protecting the body.  In some individuals, the body produces too many eosinophils in a particular part of the GI tract, which leads to chronic inflammation and can cause extensive tissue damage in that area.  It is currently thought that there is both auto-immune and genetic involvement in EGID, but further research will be needed to confirm these links.  Like many inflammatory bowel diseases, EGID is a classic waxing and waning condition, meaning that the symptoms and their severity can change on a daily basis.

This family of rare diseases is diagnosed depending on where in the GI tract the elevated eosinophilic count has been found:

  • Eosinophilc Oesophagits (EE or EoE) – in the oesophagus and is the most commonly diagnosed form of EGID
  • Eosinophilic Gastroenteritis (EG) – in the stomach and/or small intestine
  • Eosinophilic Enteritis (EGE) – in the small intestine
  • Eosinophilic Colitis (EC) – in the large intestine (colon)

This last one is the type that M has been diagnosed with, which means he has, in typical M-fashion, a relatively rare type of a rare chronic illness.  Statistics are not readily available as it was only first recognised during the first half of the 20th century, but over the last 20 years, cases have been recorded in the UK and there are currently in the region of 700 cases looked after at Great Ormond Street Hospital.  This suggests around 2,000 diagnosed cases across the UK as a whole and there are also known cases of EGID in other countries, including Australia and Canada, with a starting point of 3,000 people diagnosed in the USA.

Symptoms of EGID include:

  • Diarrhoea
  • Constipation
  • Blood and/or mucous in the stools
  • Stomach pains
  • Lethargy
  • Mouth Ulcers
  • Rash
  • Asthma attacks
  • Sore throat
  • Joint Pains
  • Headaches
  • Vomiting
  • Nausea
  • Reflux
  • Failure to thrive
  • Sudden weight loss
  • Loss of appetite
  • Mood swings
  • Excessive sweating/body odour
  • Loss of colour in the skin
  • Dark rings under the eyes

None of these symptoms is exclusive to EGID and not all are experienced by all patients.  We had noticed a number of these with M in the years leading up to his diagnosis and it was the odd combination of them – diarrhoea, poor weight gain, joint pains, mood swings, excessive sweating, body odour and dark shadows under his eyes – that led to our conclusion that this could well be what he had.

As eosinophils are part of the body’s response to allergic reactions, it comes as no surprise that many people with EGID also struggle with a varying level of food and environmental allergies. What makes it even harder is that these allergies can also wax and wane and therefore can change over the years.  allergiesWhen M was diagnosed we were asked to put him on a MEWS (Milk, Egg, Wheat, Soya) free diet, which is a common starting point for those with EGID.  Over the years, we have also had to remove gluten, potatoes, raisins and raspberries from his diet to try and alleviate his symptoms and we still don’t seem to have the answer to whether this list is complete or not.  Some of the lovely families we have met through FABED have had to go a step further and remove all foods from their child’s diet due to a constant flare-up of their EGID. These brave children are now tube-fed an elemental diet in an attempt to help them feel better and grow stronger.

These families have to cope with numerous hospital visits, regular hospital stays, invasive diagnostic procedures such as colonoscopies and endoscopies, tube-feeding, colostomies, huge amounts of medicines daily and the unavoidable emotional fall-out from children who long to be just like their peers.  All of this is why it’s important that the media realises that EGID is not about “Mr Allergies” and why such factually inaccurate portrayals of chronic illnesses are problematic for this EGID Mum.

 

If you are interested in finding out more about EGID, you can also look at these sites: 

FABED   CURED    Apfed   ausEE

***Breaking news – today I received an e-mail response to my complaint from the Holby City series producer.  He has offered to look into the research done for this story-line and will discuss it with me, over the phone, later this week***

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.

Dolphins, Killer Whales and all things underwater

When originally planning our 2 weeks “doing” Orlando, Mike and I made the conscious decision not to visit any of the multitude of water-parks you can find there.  As much as both children enjoy swimming, M’s recent struggles with his bowels meant that we were uncertain of how well he would cope with a day in, out and around the swimming pool, so instead, we opted for 2 other water-themed parks:  Discovery Cove and Seaworld.

Discovery Cove

IMG00002smOne of the things I was keen for the children to experience (and to be perfectly honest me too) was swimming with dolphins and where better to give this a go than at Discovery Cove.  This idyllic haven is hidden away in central Orlando and it transports you away from the hustle and bustle of the theme parks almost as soon as you step through the doors.  We arrived early, booked in for our dolphin adventure and then headed off to the beautiful beaches and pools to find a place to camp out for the day.  The park only allows a maximum of 1,300 people entry on any given day, which ensures that there is room enough for everyone to enjoy what’s on offer. We settled next to a pool where you could swim with stingrays and other tropical fish and then headed off to the main restaurant to talk to the chef about breakfast and lunch.

Discovery Cove is a very different experience to the others in Orlando as your ticket price covers all your food and drink for the day including breakfast, lunch and snacks and they request that you don’t take any of your own into the park with you.  My initial email to their special assistance team had resulted with their Head chef calling us at home to discuss the day of our visit and M’s food requirements.  They were able to offer M and G a good choice of foods for both meals and, even better, had 3 allergy-friendly snack boxes that were readily available at all of the food concession locations and included M-friendly treats such as fruit snacks, Orgran Outback animal biscuits, pretzels and portions of houmous.  Food sorted for the day – and maybe a few extra snacks too – we spent the day lazing in the sun and learning how to snorkel amongst the fish.

IMG00015sm

M and Clipper

The highlight of the day was, quite obviously, our swim with the dolphins.  M had been nervous as he’s not the strongest or most confident of swimmers, but there was no need.  The trainer encouraged both M and G to feed, pet and even kiss our dolphin, Clipper, before their individual swims and they loved every moment of it, despite the cold temperature of the water! M was able to do the “shallow” swim, which allowed his feet to comfortably reach the bottom at all times whilst still being pulled along by the dolphin.  G, Mike and I took part in the “deep” swim and the thrill was exhilarating. All in all, we had an amazing day, M and G were desperate to do it all again and I wouldn’t hesitate to recommend this to anyone.

Marks out of 10: 10 – a real once in a lifetime experience for all the family and the food offerings were impressive too

Seaworld

blue horizonsHaving had such an amazing experience at Discovery Cove, we were keen to see how their neighbour, Seaworld would compare.  The day started well, with efficient service at guest relations to issue our disability access pass and a park map that indicated where allergy-friendly foods could be found.  We set off on our way around the park and G and M were delighted by the various displays and shows we could see.  First, we oohed and aahed at the amazing dolphins and beautiful birds of the “Blue Horizons” show, which instantly drew a response from G that she’s planning to work at Seaworld training dolphins when she’s older; and later laughed and disappointingly didn’t get splashed by the mighty killer whales in “One Ocean“, despite M’s best efforts of sitting us in the splash zone!

Due to the wealth of food available to us at Disney – an opportunity that we’d certainly taken full advantage of – we didn’t feel hungry enough to need to investigate our food options until we got to lunchtime. The children were excited to see an allergy-friendly pizza restaurant on the map and we headed there with our fingers crossed that we might be able to enjoy pizza for a change.  Disappointingly, we once again hit a problem.  The gluten-free pizza base came ready topped with tomato sauce and cheese, instantly rendering it unsuitable for both G and M.  I was surprised to find this was the case, but quickly ushered the children away from there and headed off to the next location.

Photo taken by M

Penguin photo by M

Two locations later, I finally stumbled into the Spice Mill restaurant and met their allergy server and chef, who discussed our needs and what options were available to us.  Both children settled on burgers, served in allergy-friendly rolls with a side of fries for G and a hefty portion of water-melon for M.  We were able to jump the queue and, as we paid, the server prepared our food and brought it to us as quickly as possible.

Lunch finally sorted, we spent the afternoon in Antarctica with the penguins and getting extremely wet on the impressive “Journey to Atlantis” log flume ride, before Mike and I took G and M out on the lake in pink flamingo pedalos.  It was another good day and despite the uncertain start, lunch turned into a great success.

Marks out of 10:  8 – the children loved seeing the shows and the animals, but we were let down by the assumption that gluten-free pizza with cheese could be considered fully allergy-friendly.

Legoland Florida

As well as our successful days at DIsney and our disappointing foray to Universal, Mike and I treated the children to a day out at Legoland Florida20140809_232045We are big fans of the Legoland Windsor resort and had a marvellous visit there last summer with our friends from the wonderful charity, FABED, so were excited to make a visit to the bigger and better (well it’s American so it had to be, right?) Floridian version.  This theme park is situated on the site of the old Cypress Gardens and has kept a relatively small portion of the original park at the centre of the new one.  It’s around a 45-minute drive from Disney and was easy enough to find once we were headed in the right direction.  The park was surprisingly empty upon our arrival and we headed straight to Guest Relations to see if we could get a disability access pass (or their equivalent) for M.  The pass was issued without question and Mike then asked about what allergy information they had available and how we could manage this during our visit. The very helpful guest relations staff member knew there was a hard copy somewhere of this information, but sadly couldn’t put her hands on whilst we were in the office.  No matter, she reassured us, it was all available online.  Great, I thought, I could hop onto their website using my tablet and work out where we could safely eat.  Ah no, Legoland Florida has no wi-fi available in the park, so it was actually impossible to see any of the information we had been advised to access.

20140809_195203

Need a car? What better than a Lego Ford!

Being seasoned travellers with M and G, of course, we had our trusty rucksack full of safe foods and reasoned that we could and would think on our feet when it came to lunchtime. My notes from our day trip record that it was “good, but not the well-oiled machine that WDW is”.  The queues were painfully slow and the service not massively efficient.  Their staff members appeared, for the most part, to not be terribly enthusiastic in their roles and I felt it would benefit from finding more customer service orientated staff.  Mike had to wait for nearly 30 minutes just to get to the front of the queue to ask whether they could accommodate food allergies at that particular food concession unit.  There was a copy of an allergy menu there, but we were disappointed to discover after ordering that the allergy-friendly “plain” burger was served with cheese!

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We each picked our ride of choice from the map and started heading our way around the extensive grounds to make sure we made the most of our one day there.  Many of the rides were similar to those found in Windsor and the children had a great time revisiting some of their old favourites as well as trying out a few of the “new” ones.  20140809_222642We enjoyed the US version of Miniland although I was disappointed at how shabby many of the models appeared, especially as you could easily identify where elements were missing due to the telltale marks  and empty spaces on the surfaces.  Nevertheless, it was fun to see the likes of Las Vegas, Hollywood, the White House, San Francisco and New York depicted in lego.

 

20140809_210205Unfortunately the weather was somewhat inclement and so many of the rides closed for around an hour or so during the afternoon.  We took advantage of the opportunity and explored the original grounds of Cypress Gardens and stood in awe of the amazing Banyan tree that can be found there.  We were hoping to see the Pirates water show as M and G love the “Pirates of Skeleton Bay” in Windsor, but the threat of thunderstorms and lightening meant that the final performance was cancelled.  Despite all of this, we enjoyed our time there and had plenty to keep us all busy for the day.  I would say that Legoland Florida is worth a visit if you, or your children, are lego fans, but in my opinion, Legoland Windsor beats it hands down.

Marks out of 10:  6 – a good attempt, but the queuing system, park maintenance and food available let it down.