Tag Archives: Awareness

The Message from “My Man” at the BBC

Three weeks on from that episode of the BBC’s hospital drama, Holby City and I’m still reeling from the amazing response to my blog post and the unexpected bonus of two phone-calls with series producer, Simon Harper. When I penned my heartfelt response to what Mike and I had watched on-screen, I expected to reach a few more than my usual readership and dared to hope that I might beat my previous “top score” of 186 readers in a 24-hour period with my letter to our local hospital. I never dreamed that over 2,000 people across the world would read, comment on and share that plea for responsible portrayal of chronic illness in the mainstream media. As well as sharing my thoughts through my blog, I made a formal complaint to the BBC and, through the wonder of Google, managed to track down Simon Harper and sent him an e-mail, expressing my concerns about the inaccuracies about EGID portrayed in that episode.

Courtesy of bbc.co.uk

I didn’t expect to hear anything back, so you can only imagine my surprise and absolute delight when Simon not only replied to my e-mail, but also offered to pick up the phone and discuss the matter with me. We agreed a day and time to talk and I spent the week making notes and talking to fellow EGID parents through FABED and other on-line forums to get their points of view on what I needed to raise in my conversation. That first phone-call lasted for around 30 minutes and at no point did I feel that Simon was keen to close down the conversation and finish the call, He was genuinely interested in learning more about EGID and understanding why this episode had caused such distress in the on-line community. We spent a long time discussing the difference between “intention” – what the program was trying to portray – and “perception” – what the viewing public understood – when it comes to producing a drama for television viewing and here Simon explains it in his own words:

The intention: “the guest character’s general allergies were a dramatic smoke screen to the actual underlying cause of his pain, neuralgia – but that in no way were those allergies supposed to suggest a condition as specific and, as I now know from talking to you, severe as EGID. In no way was the story supposed to say that EGID was in fact just neuralgia!“.

The perception: “I think it comes down to one scene where Zosia (the doctor) mentions that Nigel’s eosinophils are up – due to his general allergies – and she then goes on to mention “his eosinophilic gastro-enteritis”. What I can see maybe wasn’t clear was that Zosia, excitedly bandying round theories and possible prognoses at this stage of the story, is in fact supposed only to be raising EGID at a possibility at that moment. A possibility that, in fact, turns out not to be the case. But I can see that the phrasing “his” – combined with the fact that dramatically speaking, we never see Zosia rule out EGID (a moment we assume happens off-screen) – could have given the wrong impression. It’s a tough call with medical drama – you never play on-screen every single beat of medical treatment that would happen in real life, choosing the moments which best serve the story, and sometimes rely on the audience’s imagination to assume and deduce. It’s a delicate balance, and there is definitely a lesson to be learned here, because evidently, missing out that moment has in this case given the wrong impression.”

I also mentioned my concerns that a range of inflammatory bowel diseases had appeared to be ruled out through a simple ultrasound, whilst those of us living with this family of illnesses know, from our first-hand experiences, that endoscopies, colonoscopies and biopsies are the only reliable ways to confirm a final diagnosis. The conversation ended with an agreement that Simon would spend time investigating what research was done, talking to the consultant concerned and checking out the ultrasound situation before phoning me back a week later to talk some more. I was struck by his commitment to unpicking where and how things went so wrong and have to confess to being cheeky enough to send another e-mail, thanking him for his honest discussion with me and pointing him in the direction of various EGID websites, so that he could truly understand what our families deal with on a daily basis.

A week later and that second phone-call happened. Another 30 minutes valuably spent clearing up those outstanding points, including his agreement that the discussion regarding the ultrasound came across as far more definitive than was their intention. I have to say I’m impressed with the research into EGID he had done during that week and appreciate that he took the time to properly review the research done originally for the program. Finally, and definitely most importantly, he has sent a huge apology to our EGID family and I truly believe it is a heartfelt one.

Courtesy of psmag.com

“I repeat, I am absolutely aware that despite all this, an upsetting impression was given due to the way EGID was referenced and never ruled out on-screen and there is absolutely a lesson to be learned there for the future. I can’t undo any upset caused, I realise, but do so hope I have been able to reassure you that we take the medical research aspect of HOLBY with the utmost seriousness and that in this instance, it truly was not an instance of inaccuracy, but, I think, a point of clarity that had an unforeseen impact on how the story came across.

I truly have enjoyed our conversations, as not only did I get an education on the condition that your son, you, your family and many others are so courageously living with, but, as a producer, it is always absolutely invaluable to get insights on how our story intentions actually translate to an audience member – that gives us great help in the way we tell our stories for the better to make HOLBY an entertaining but hopefully also stress-free hour! And I do hope that you will continue to watch and enjoy the show.“

A big thank you to Simon Harper for his willingness to be open and honest about the research done for this storyline, the errors of judgement made in the production, to talk to me not just once, but twice and his apology for the upset unintentionally caused. As one of my fellow EGID Mums asked (and I wholeheartedly agree):

“Any chance they’ll get Mr Allergy (grrrrrr) back and do a proper episode on EGID?“

Simon, I wait for your answer!

“Out of difficulties grow miracles” – Jean de La Breyere

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These last few months have been, well, interesting; and yes, that’s one of those euphemisms you use when you really don’t know how else to explain what’s been going on. In many ways life was reduced to a whole new level of hell in our household; one that I’ve hesitated to discuss because of the nature of our experience. Sometimes I need to delay publishing my posts to give us all time to process what we were dealing with before revealing it to the outside world, to allow the storm to pass and to let those memories start to fade. Now, I’m – we’re – finally ready.

The reason for it all has been M’s ongoing issues with his bowel. When the pellet study was done a year ago at our local hospital, the x-rays indicated that he had developed what is termed “mega-rectum” and “mega-colon“, caused in all likelihood by ongoing and previously undiagnosed impaction. The priority at the time was to clear out his system and keep it clear, but unfortunately, for reasons still unknown, M has limped from one bout of constipation to another over the last 15 months. The constant flow of problems has taken its toll on the whole family, but most noticeably on M, who is finding it tough to be positive when he feels that nothing is making a difference.

Our first meeting with our local consultant led to a long discussion about what, if anything, we could do to try and ease this problem and how we could help M’s bowel to recover. He suggested a course of treatment that sounded extreme, but which he felt would encourage this troublesome body part to start to repair and would therefore hopefully alleviate some of the issues. He proposed starting M on yet another laxative, called Bisacodyl, which would be administered by a daily suppository each evening. This would cause an immediate response, thus reducing the likelihood of ongoing impaction and hopefully M’s bowel muscles would eventually recover some of their elasticity. This treatment was not to be a long-term one and we would start doing it daily for just 4-5 weeks before being assessed in clinic again.

Of all the medicines that M has endured over the last 3 years, this is, by far and away, the worst one we’ve had to put him through. Day 1 was tricky as he was incredibly nervous and had no idea what to expect. The subsequent week was hell and the nightly battles as I gave my boy this medicine accompanied by his incessant crying and pleading took an almighty toll on the family. Job being done, a nightly cuddle was needed to reassure and comfort us all. Due to unexpected problems during that first week, M experienced a heavy bleed and we were advised to take a week’s rest before restarting and finishing the course of treatment. Unsurprisingly that was even more difficult to do, in fact almost impossible, but we persevered and carried on until our next appointment.

Mike and M had their hopes pinned on the medicine stopping then, I was slightly more sceptical and sadly I was proved right. There had not been sufficient progress in that 5 week period for our new consultant to be satisfied and he wanted us to keep going until the start of the school holidays. At that point, he asked us to double the dosage, administering the medicine both morning and evening until we flew to Florida. I think that everybody’s heart sank at that point, although M cheerfully focused on his idea of a silver lining – he got to stop taking the Senakot, which was his least favourite medicine and that it would all stop as soon as we got to Florida. How we got through those 8 weeks, I really don’t know and I hate knowing that we might be told to restart the medicine again in the future. Worst of all, we won’t know whether this treatment has been of any help for a while yet, which is discouraging, but we will continue to keep our fingers crossed and hope that out of that difficult time, we really will start to see small miracles grow.

The Great ‘Flu Vaccination Debate

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It’s that time of year once again, when the NHS starts talking about ‘flu vaccinations and those of us with chronic illnesses – or who fall into one of the other qualifying categories – attempt to book our appointment before winter’s half over and we’ve already been laid low by the ‘flu. Somewhat astonishingly this year, both my GP’s surgery and I were quick off the mark in being organised and by mid-September, not only had my appointment been booked, but I’d also had the injection itself. They had checked my medical records and found that it didn’t appear that I’d ever had the pneumo-vac, which led to the unexpected double whammy of a needle in each arm during my 5-minute appointment. The only years I’ve not had the ‘flu jab in the past 29 years of my T1D life were those when I was pregnant and that was down to personal choice. My one experience of the ‘flu, caused by an inability to get an appointment before November, saw me laid low for the best part of 2 weeks by a bad bout of the ‘flu and Mike and my Mum were let to rally the troops on a daily basis. For me, the ‘flu jab is not an option – its a necessity.

Since having M’s diagnosis with EGID and learning more about the long-term nature of his condition as well as knowing firsthand all about life with a chronic illness, I started to investigate whether he should also be having an annual ‘flu vaccination to help keep him healthy. Our GP offered no opinion on whether he should have it or not, though he was more than happy to agree if we wanted to go ahead, and our GOSH consultant thought it a good idea, but something that needed to be actioned by our GP. It quickly became evident that Mike and I would be the ones making the final decision and so the hard work began. I started researching the pros and cons of the vaccination for M, but with one thing and another, including his admission to GOSH for more scopes, last year just passed us by and as we had survived the onslaught of winter colds and bugs reasonably well, I shelved the idea for another time.

Courtesy of blog.fromyouflowers.com

This autumn has sneakily crept up on me and with its arrival has come the need to revisit that discussion and make our decision. One of my main concerns was M’s egg allergy as the vaccines given are grown in hens eggs, which can cause an allergic reaction and that is something we need to avoid given M’s delicately balanced state of health right now. However, reading more on the subject (and trust me there’s a lot of information out there), the fact that M does not suffer with anaphylaxis, but rather a delayed reaction to egg combined with the availability of ‘flu vaccines with low or no egg content, I was reassured that it would be safe to give it to him.

Next I needed to consider whether to insist he has the traditional injected vaccine or if we should try the new nasal spray vaccinations, which are currently being rolled out across the UK for all children under 4. Whilst the nasal spray would certainly be easier to administer, the current NHS recommendations are that this is not given to children with a known egg allergy as there is simply not enough evidence to conclude whether it is safe or not. Much as I feel M needs to be protected against the ‘flu, I am not yet prepared to take an unnecessary risk whilst there are still alternatives available. We are struggling with his EGID at the moment anyway and adding an unknown to the mix could lead to repercussions that could affect us all for months.

So, it would appear that the debate has been settled. I have requested with our new GP that M is given the ‘flu vac and am waiting for the phone-call back to confirm that a low/no egg vaccine has been delivered to the surgery. Fortunately, M is astonishingly stoic about having injections, so I’m confident that he will take it with the minimum of fuss – it would be a whole other story if the child in question was G, but luckily we don’t feel she needs to have it too for the time being.

EGID – the real story

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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.

EGID, 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. When 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:

***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***

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

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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. 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. In 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.

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. This 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. Luckily 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. These 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

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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

One 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.

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

Having 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.

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

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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 Florida. We 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.

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!

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. We 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.

Unfortunately 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.

Not a Universal success

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I wouldn’t blame you for thinking that we did nothing but Disney whilst on our hols, however we did venture to some of the other theme parks and attractions during our 2 week sojurn in Orlando. G and M were particularly excited about the prospect of visiting Universal Studios, or more accurately, the “Wizarding World of Harry Potter“. My enthusiasm was not so great, particularly given my poor experiences to date in trying to get hold of some, or indeed any, information about visiting the parks with my food-allergy duo. I found the website difficult to navigate and the information available on it less than informative. My first e-mail to them went unanswered and if it hadn’t been that both M and G were desperate to visit, I honestly think I might well have given up at that point. However, I eventually tracked down a helpful customer services rep, who phoned me in the UK and discussed our needs at length. She reassured me that they catered for food allergies and that we should encounter no problems when eating in the parks. I was interested in booking the Character breakfast at La Bamba cafe so that the children could meet a Minion and once again I was assured that we could mix and match the breakfast options to get a meal that was safe for both G and M. Taking it on trust, I booked the breakfast and pencilled in 2 days at Universal on our somewhat hectic schedule.

Mike imitating both Dave Minion and Gru at the character breakfast!

Our first day started well as we arrived in glorious sunshine and headed directly to Diagon Alley carrying a rucksack prudently packed to the gills with M-friendly snacks. Our first view of Diagon Alley was impressive with a multitude of shops selling everything a young wizard could want as well as the fire-breathing dragon atop Gringotts Bank. We headed into a nearby wand shop for both children to chose a wand to buy and then ventured off on a magical tour, following the map to find the location of spells for M to cast using his interactive Dumbledore wand. I even dared to sample a pint of Butterbeer as requested by my dear friend, F, but have to confess it’ll be the first and last time I do that as the drink was just too sweet for any of the family to enjoy. Disappointingly, as jaw-dropping as the “set” was, there really wasn’t enough to appeal to the younger age groups which we all found surprising. Nearly all the rides, apart from the utterly amazing Hogwarts Express that carried us between the 2 halves of the Harry Potter experience, were roller-coasters or simulators that were just too big and scary for my nervous pair.

I was also disappointed by just how commercial it all felt, especially the “unique interactive experience” at Ollivanders shop in Hogsmeade, which promised far more than it delivered. Just 2 children were selected from the crowd in the shop to participate in the amazing experience of finding out which wand was to be theirs; after all, as we all know “..the wand chooses the wizard…” (JK Rowling: Harry Potter and the Philosopher’s Stone). Not only was every other child in the audience disappointed not to be part of the action, but – call me a cynic – I don’t imagine many parents found it easy to then say no when their little darlings wanted to buy the wand that had chosen them in such dramatic fashion.

By lunchtime we had seen and experienced all that the Wizarding World had to offer and headed off in search of some food for our group. We left Hogsmeade, where the food queues were out of the door, bypassed yet another hard-sell when the magic show we had been ushered into turned out to be little more than an opportunity to buy 4 tricks for the price of 2 and ended up at the street markets of the Lost Continent. We stopped at what seemed a likely place as it sold hot dogs, something we had found was inevitably safe at all of the Disney parks and I queued to speak to what was possibly the most unhelpful server I have ever met and someone definitely not suited to a customer service role. She gazed blankly at me when I asked for allergy information about their food options and struggled to understand even the simplest of requests:

“Could I please have 2 hot dogs without the bread-rolls as I have 2 children with multiple food allergies?”

“What?”

“Could I have 2 hot dogs without the buns?”

“You mean you don’t want the buns?”

“No, just the sausages…the meat”

“You don’t want the buns?”

“No”

“Just the dog?”

“Yes”

“But no bun?”

“No. Just. The. Dog.”

“So, you don’t want the bun, just the dog?”

“Yes”

“Oh. I’ll have to check with my manager if we can do that.”

Our exchange on whether I could get fruit or vegetables as an alternative side to the bun and the fries went in a similar vein. I gave up any hope of intelligent discussion at that point and G and M ended up with a hot dog each – “just” the dog: no bun, no fries, no fruit and no veg, all for the princely sum of $15 plus taxes. Yes, that’s right, £10 for 2 sausages that barely touched the sides going down. Mike and my Mum picked out some safe looking bits of salad from their lunches, we bought a packet of crisps for G (another £2.50 there) and fed M from our own plentiful supplies, much of which had been got from Disney.

I’d love to say our experience got better, but it really didn’t. In “The Cat in the Hat” area, a place filled with lovely rides inspired by Dr Seuss books and enjoyed by us all, we came across a bakery selling the most amazing-looking cakes, biscuits and sweets guaranteed to tantalise the tastebuds. Some of them were gluten-free, but none of the them catered for those with more complex allergies like G and M and we left empty-handed. I had toyed with the idea of eating dinner in one of the restaurants at Citywalk, but again, of the 4 I had contacted ahead of our visit, only 1 came back to confirm they could probably cater for M’s food needs. Maybe we’d been spoilt by our experiences in Disney, but Universal was a real disappointment and if it hadn’t been for our prepaid and booked Character breakfast for our second day there, I doubt we’d have bothered going back.

Raglan Road Irish Pub

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Naturally having asked G and M to name their favourite meal, I got to thinking about what my own number 1 would be. I loved nearly every meal we ate at Disney and would have been more than happy to return to any of the restaurants to eat again. The one that stands out in my mind however, has to be our fabulous dinner at the Raglan Road Irish Pub at Downtown Disney. I had read great reviews about the pub before booking and I had contacted them back in February to find out whether they could cope with M’s food allergies. Their response was to send me a complete allergy listing for all their menu options, so I had a good idea of what M and G would be able to order. Unfortunately, our evening started on a slightly sticky note when I discovered that the allergy-friendly calamari that both G and M had been looking forward to trying was no longer available.

G’s fish & chips

M’s face dropped and he declared a disinterest in ordering anything off the menu, whilst G chose a traditional favourite of fish and chips. Our server, Sheldon, was fantastic however and after a quick word with the chef, came back to M with an offer of shrimp cooked in their gluten-free batter accompanied by green beans, carrots and parsnips. What impressed me most here was the offer of a side dish that wasn’t obvious from the menu, but one that our server knew and enjoyed himself and that he had checked could be made safe for M. With that offer, M cheered up instantly and he and G disappeared off to watch the Irish dancing, whilst we soaked up the atmosphere accompanied with a pint of Magners cider.

M’s shrimp & roasted veg

The food, when it came, was delicious and M not only made short work of his dinner, but set to helping G polish off the remains of her large portion of fish. Main course done and we turned to the decision of pudding. The options here were a little more limited that we’ve found elsewhere, but it was nice to have the “healthier” choice of fresh fruit drizzled with honey. G is not a fan of fresh berries or melon, so whilst M was in heaven enjoying a bowl of mixed berries, that was the epitome of G’s idea of hell. Once again Sheldon stepped to the fore and a bowl of apple pieces drizzled with honey appeared for her, which frankly made her day.

This is definitely a restaurant Mike and I would have loved to go back to and we were both disappointed that we just couldn’t find the time to squeeze a return trip into our busy schedule. A great choice and yet again we experienced the wonderful service we have come to associate with Disneyworld.

G & M’s Top Disney Picks

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Having written my last blog post, I asked G and M to name their favourite meal whilst we were at Disneyworld. It came as no surprise to me that neither could narrow it down to just one meal, so instead they each listed their top 3 (which were exactly the same) and I thought I’d share them with you.

Afternoon tea at Citricio’s Lounge – Grand Floridian

Our afternoon tea at the Grand Floridian was a surprise for my Mum, who is celebrating a special birthday in September and was one that the children and I had successfully kept from her for months. We arrived at the hotel via monorail from the Magic Kingdom and it was only when I suggested we got off there that my Mum had any idea of what was going on. The children both opted to have the “Mrs Potts Tea” and were treated to 3 tapioca rolls filled with turkey, ham and strawberry jam, followed by a small plate filled with a variety of allergy-friendly cookies and fresh fruit. M chose to have apple juice to drink, whilst G had water and both were served from their own individual tea-pots, which they loved and took the chance to pour more to drink at every opportunity. We were well looked after by Chris, the on-duty manager and David, our waiter and the children both rated this as their most favourite meal of all.

Mickey waffles – Tusker House (Animal Kingdom), The Mara (Jambo House) and Chef Mickeys (Contemporary Resort)

We didn’t order these for our first breakfast at Disney, but instead waited until the character breakfast we’d booked at Tusker House. Chef Renee confirmed that they were gluten-, dairy-, egg- and soya-free and only contained a small amount of potato starch. The kids were over-the-moon to be given the opportunity to eat such a treat and I don’t think I’ve ever seen M consume so much for his breakfast. They ate these marvellous Mickey waffles with lashings of maple syrup and strips of crispy bacon. Elsewhere they were also given fresh berries to enjoy alongside them. I know G liked them, despite her assertions the other day that perhaps they weren’t in her top 3: after all, repeated requests for seconds and 1 breakfast of 5 Mickey waffles would seem to disapprove her statement!

Hoop-dee-doo Musical Revue – Wilderness Lodge

This was my wildcard dinner reservation, but one I’m really glad I booked as both children had a brilliant time and loved every minute of the meal. This is a dinner show, where the audience is entertained by the antics and songs of the 6 performers both on stage and with some audience participation, whilst enjoying an all-you-can eat dinner of fried chicken, BBQ ribs, green salad, baked beans, mashed potato, corn and cornbread. M and G were treated to plates overflowing with food, including grilled chicken, ribs, corn, tapioca rolls and a baked potato for G. Instead of the strawberry shortcake offered for dessert, they were given coconut ice-cream, strawberries and allergy-friendly chocolate cookies. Not only was the food delicious, but they clapped and cheered along with the show and took the opportunity to play the washboard and dance around the dining room.

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