Tag Archives: allergic reaction

Not a Universal success

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.

Hay fever

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Every 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.

We 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!

Eye adventures

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Have you ever even heard of a chalazion? No? Me neither, but after last weekend’s events, I now consider myself to be an expert. It all started with what I thought was an innocent stye in G’s right eye a week ago. Her eye was a little swollen, but I’ve suffered with styes myself over the years and simply set to bathing it regularly with cooled down boiled water and bicarbonate of soda. I had my fingers crossed that this treatment plus a trip to our GP on Monday would do the trick – why do children always get ill on the weekend? – but luck wasn’t with any of us last weekend.

Courtesy of medypal.com

Whilst Mike and M enjoyed a fast-paced weekend of adrenalin-filled 8th birthday parties, G and I were subjected to 7 hours visiting 3 of our local hospitals. By the time G woke up on Sunday morning, it became abundantly clear that a trip to A&E was going to be necessary. Poor G looked like someone had whacked her in both eyes, which were heavily swollen, red, weeping and extremely tender to the touch. The single stye appeared to have multiplied and she now had a row of them across the bottom of both eyes. We started at our local children’s hospital, a place I’ve visited more in the last 3 months than in the past 3 years due to our bad experience with their previous care of M. The doctor there identified that G had had an allergic reaction to something unknown and gave her an anti-histamine to start to reduce the swelling around her eyes. However, she was concerned about the number of small lumps along G’s lower lid and referred us on to the local eye hospital, who could see G just after lunch.

Fortunately, the hospitals are within walking distance of each other and we were able to pick up the prescribed anti-histamine from the main hospital (the only hospital pharmacy open on a Sunday), grab some lunch from a coffee shop and make our way in plenty of time for G’s appointment. Once at the eye hospital, G was diagnosed as having a series of styes as well as a chalazion, which has resulted in preseptal cellulitis, a severe inflammation and infection in her lower eyelids. Another prescription written, this time for antibiotics, eye drops and eye ointment and a mad dash back to the hospital pharmacy to get the medicines before it closed at 3pm ended our day and G and I were finally back home by 4pm, a full 7 hours after we left it that morning.

The great news is that a few days on, the medicines and continued regular bathing and massaging of her eyes has started to work and the swelling and redness is starting to subside. This morning her left eye looked almost back to normal and her right eye has improved hugely, though the chalazion will take a little longer to disappear and return my girl to her full beauty. G sadly missed her last days of Year 5 due to the infection, but I’m hoping for a great summer holiday now she’s well on the road to recovery.

Allergy Adventures

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In my recent blog about the Allergy and Freefrom show in London, I mentioned in passing the wonderful Allergy Adventures, who M was keen to visit during our day at the show. We first discovered Allergy Adventures at last year’s show and were so impressed with their products that we’ve kept going back for more.

Allergy Adventures was set up by the lovely Hailey, who explains her reasons for starting the company on her website. She produces beautifully illustrated children’s books that take the reader on a magical journey inside their lunchbox, accompanied by a character with the same food allergy as them as they look for safe foods to enjoy. Each book focuses on one main allergen and teaches the child “how to tell others about their allergy and stay safe around food.” These books are bright and colourful and drew M’s attention last year as we wandered the stalls of the Allergy show. Whilst he and G joined in with some paper-plate crafts – an absolute godsend to any parent who wanted a break from complaints of aching legs due to the amount of walking needed – Mike and I flicked through the books.

Unfortunately, due to the extent of M’s allergies, there isn’t one particular book that we could buy for him to enjoy and to share with his friends, but there was another product that caught my eye and which I snapped up in an instant. These fantastic “stickers” have proved invaluable in labelling any pots, products or boxes that go into school for M’s use. His lunchbox, water bottle, medicine pots and individual tupperware containers all have a sticker, indicating that the contents are M-friendly and for his use only. Even the children’s swap-boxes have a couple of “Hands off” stickers, so that everyone knows that they are specifically for G and M. What I particularly love about these stickers is that they create a positive association with his food for M. Rather than focusing on the “free-from” label and listing what he can’t eat, they instead stress that the food is special because it belongs to M or G and not to anyone else – a great message for my allergy-challenged boy.

Earlier this year, Allergy Adventures also produced an amazing allergy-friendly cooking guide, which lists out easy substitutions that can be made when baking or cooking for someone with food allergies. Not only does it make sensible suggestions about replacement products to use, but the notes highlight key areas to consider when using alternatives. Best of all, this has been produced as a free resource and can be found by following this link. With plans afoot for creating more resources to support children with allergies both in hospital and in schools, this is definitely one to watch.

After our first hour or so at the show, we finally listened to M’s request and headed for the Allergy Adventures area. Once again both G and M created paper-plate masterpieces, whilst resting their aching feet and Mike and I had a break from their moans, for a few minutes anyway. I grabbed the opportunity to catch up with Hailey, who I chatter with on Twitter and also the fabulous Vicki, the FreeFrom Fairy, another Twittersphere friend. Once G and M had finished their creations, they were captured on film for the Allergy Adventures video all about the 2014 Allergy show. There’s really nothing more to add. This is a great set of resources for anyone with a child with food allergies and I would really recommend you spend some time exploring everything Allergy Adventures has to offer, it definitely won’t be time wasted.

Allergy & Free From Show, London 2014

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Last weekend was the annual Allergy and Freefrom Show in London, one event that has been pencilled in my diary since we visited it for the first time last year. This amazing show features a multitude of companies and charities who provide goods and services for those struggling with a life with allergies. From the well-known brands to smaller businesses who have only just started out, the stalls offered both G and M the opportunity to taste and try a range of safe foods and drinks. This year we visited on the Sunday, hoping for a marginally less hectic day there than the one we experienced last year. We arrived before the doors opened and despite joining the long queue that was forming outside, the sensible decision was made to open the doors slightly ahead of schedule and we were inside the hall in no time at all.

As soon as we spotted the map, we ran our eyes down the list of stall-holders, noted the location of our key stalls to visit and formulated our plan. I wanted to see as many of the allergy stalls as possible, hoping to find some more M-friendly products to add to our cupboards. Mike and G declared themselves happy with just wandering around and tasting whatever free samples were on offer and M had 2 specific requests for the day – Ms Cupcake and Allergy Adventures.

Courtesy of simranb94 on Instagram

M often talks about the decadent cupcakes that he enjoyed at last year’s show, which were revolutionary for him as he hadn’t had such a large choice of cakes to choose from since before his diagnosis. All of these cakes are vegan and some are baked to be gluten- and soya-free too. He remembers well just how large these treats were and had discussed at length that he thought it best if this year he and G chose one to share rather than one each. Needless to say, the reality and temptation proved too much and all his plans went out the window the minute he laid eyes on Ms Cupcake’s stall. M chose a Black Forest cupcake and a choc chip cookie sandwich, whilst G had a wider choice and settled on a Chocolate and peppermint cupcake as well as a choc chip cookie sandwich. As they started on their mouthfuls, I asked for their opinions as to the taste, but they had no comment to add as their mouths were crammed full – a true sign of just how delicious they are!

We made our way around the myriad of stalls, tasting tidbits, chatting with stall-holders and discovering some wonderful new products to add to our M-friendly repertoire. I picked up some old favourites, such as Nakd bars, Frank* bars and Newburn Bakehouse wraps, at amazing show prices as well as finding Le conserve della nonna pesto and Free’d crackers, which I’m hoping will quickly become new staples in our home. There was a lot of gluten-free items on offer, but we struggled more this year with what was available for those with multiple food allergies, which was disappointing given that forms the basis of our allergy needs. All that being said, we came home with a carload of M- and G-friendly foods, including enough KoKo Chocolate and Strawberry flavoured coconut milk to last us at least a couple of months!

It was a long day, especially after our amazing day out at Silverstone on the Saturday, but I’m glad we made the detour from Northamptonshire to London to experience the show. Everyone there was helpful and informative and I had no problem in identifying what M could and couldn’t try. This is definitely a trip I’m planning to make again next year and one I would highly recommend to anyone living with allergies. Even better, if you live further North in the UK and don’t fancy the trek to London, there is now the Liverpool show to enjoy in October and you can find out more about visiting that here.

Gnocchi

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With the end of the school year just around the corner and G preparing to start her final year of Juniors in September, I’ve recently been reminiscing about her baby years and in particular, when we first found out I was pregnant with her. I had just qualified as an accountant, was about to move to my first job in industry and Mike and I were on holiday in Florida. My main recollection, other than the overwhelming joy of discovering we were expecting our first child, is eating Gnocchi at the Via Napoli restaurant at Epcot. For those not in the know, gnocchi are mouth-watering Italian potato dumplings and, quite obviously, this experience was in the days before my own potato intolerance was identified.

As I recalled the delicious flavours that literally melted in my mouth during that holiday, I wondered whether this was a food experience that I would ever be able to enjoy again or one that I could introduce to my multiple allergy-suffering children. I did some research on-line and found two recipes that almost fit the bill. Whilst neither was perfect by itself, I could combine and adapt them to create both M-friendly and G-friendly gnocchi. Due to the pernickety nature of my eldest, who won’t touch sweet potato with a 10-foot barge-pole, I had to use this allergy-friendly recipe, whilst I needed the expertise of this sweet potato alternative for M. I decided it would be worth the time and hard work required to cook both recipes if I could find a new meal that both would ultimately enjoy.

I will warn you now that this is not a recipe for the faint-hearted as it is relatively labour-intensive, but the delightful end result was, in my opinion, well worth the effort. I invested in a potato ricer, which produced the most wonderfully smooth mashed potato I’ve ever seen. I have since learned that you can achieve the same result using a bog standard food blender, but I’m thrilled with my shiny new kitchen gadget and wouldn’t swap it for the world.

I almost come unstuck over the weighty decision of a sauce, but decided to err on the side of caution and prepare the one suggested with the sweet potato gnocchi recipe, keeping my fingers crossed it might pass muster with G and M alike. I am astounded and delighted to announce that neither child turned their noses up at my home-made gnocchi and they were an unexpected resounding success. Unbelievably both children cleared their plates and G was so enthusiastic about the dish that she asked if I could make it again the following day!

The batches of the gnocchi dough I had made with my adapted recipe were enough to not only feed the 4 of us a hearty dinner, but also allowed me to batch up 3 more dinners for G and M and pop them into the freezer for future occasions. As the Italians would say, “molto delizioso!“

Back to basics

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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.

I 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.

I 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.

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.

Medicines galore!

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M’s daily batch of medicines

Today’s post was going to be a relatively short one. One to just give you a glimpse of the amount of medicine M takes every day. One to raise your awareness of the medical impact of this condition; but the thing is, taking 9 medicines on a daily basis is never going to be a short story, even though compared to some EGID children, this isn’t necessarily a lot. M does a great job of taking his daily doses and has moved on from last summer’s need for Grandma’s jam to being grown-up enough to take his capsules the “adult” way, sometimes even swallowing both of his lunch tablets at the same time – something I don’t think I could do. I’m also going to attempt to explain what each medicine does and why he takes it, but keep in mind that I’m no medic and so my knowledge is that of an EGID Mum, nothing more.

Medicine	Dose	When taken	Why?
Calcichew D3	1 tablet	Breakfast	A calcium supplement to ensure calcium intake is sufficient to protect bones due to malabsorption issues
Movicol	1 sachet mixed with 65mls milk	Breakfast	An osmotic laxative, which means that they relieve constipation by drawing water into the bowel to soften stools. Used to ensure M doesn’t get impacted again and we can adjust the dose as we need
Cetirizine	5mls	Breakfast Dinner	This is an anti-histamine and is used to reduce or relieve the symptoms of an allergic reaction. Typically used to help skin reactions and hayfever.
Ketotifen (Zaditen)	5mls	Breakfast Dinner	This is an anti-histamine and is used to reduce or relieve the symptoms of an allergic reaction. Typically used to help symptoms of allergic rhinitis.
Nalcrom (Sodium cromoglicate)	1 capsule	Breakfast Lunch Dinner Before bed	An anti-allergy medicine specifically used to prevent the symptoms of food allergy. It works to prevent the allergic reaction happening when food is eaten
Lansoprazole	1 capsule	Lunch	A Proton pump inhibitor (PPI) used to reduce the amount of acid produced by the lining of the stomach when digesting food and thereby reducing acid reflux
Senokot	5mls	Dinner	A stimulant laxative used to encourage the muscles of the bowel to move the stools through the body and prevent constipation. Again, we are able to adjust the dose as M needs
Neocate Active	1 sachet mixed with 300mls water	Evening	An elemental feed that contains amino acids, carbohydrate, fat, vitamins and minerals. Used to provide dietary supplementation for children with multiple food allergies. In M’s case, we believe that this is what helps him maintain his weight
VSL #3 Probiotic	1 sachet mixed into his Neocate	Evening	A probiotic supplement frequently used in patients with Inflammatory Bowel Disease (IBD). It works by forming a protective barrier on the walls of the GI tract

As well as keeping on top of all that and making sure M has the right medicines in the right doses at the right times, we also have to make sure he’s eating well and nothing creeps into his diet that shouldn’t. Tonight was “Film night” at school and I was the parent standing at the tuck shop, scanning the ingredients of each and every item being sold to check what was and wasn’t M-friendly! In comparison, our meals today were a lot easier:

	M	Me	Mike
Breakfast	Milk (200mls)	Sliced pear	Bowl of: Free-from cornflakes Rice milk
Lunch	Sakata rice crackers (2) Fruit stars	Sakata rice crackers (6) Peanut butter Celery Orange	Sakata rice crackers (10) Peanut butter Orange Apple
Dinner	Chicken and bacon pasta (Glutafin corn pasta twirls, bacon, cucumber, carrot, corn, coconut cream and egg-free mayonnaise)	Chicken and bacon pasta (Glutafin corn pasta twirls, bacon, cucumber, carrot, corn, courgette, mushrooms, tomato, coconut cream and egg-free mayonnaise)	Chicken and bacon pasta (Glutafin corn pasta twirls, bacon, cucumber, carrot, courgette, mushroom, tomato, corn, coconut cream and egg-free mayonnaise)
Snacks	Sliced pear (1/4) Nakd cocoa orange date bar Dried apricots (3) Sakata rice crackers (2) Peanut butter Sweets		Carrot cake cupcake

Lessons about the Press

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My foray into the world of the local press over the last week has taught me some interesting life lessons. Last week was all about my appearance on our local BBC radio station to talk about EGID, National Eosinophilic Awareness Week and baking for a child with multiple food allergies. I had some great feedback from people who’d listened to what I had to say and thoroughly enjoyed the experience. The pros were all about getting that message out there and raising some much needed awareness about this rare condition. The cons were that I didn’t know what I was going to be asked beforehand as it was all completely unscripted and so missed giving some information that would, in my opinion, have made the interview even better.

Courtesy of http://www.xintelecom.co.uk

Today an article featuring our family appeared in our local paper. The interview hadn’t been the easiest as I took the phone-call at work and could be spotted standing on one leg about 10 feet from the front of the office, with my left hand raised in the air in a vain attempt to get a decent enough signal to be heard at the other end – well maybe not really, but you get the picture! I don’t find explaining EGID the easiest thing in the world when sitting face to face with the person asking the question: there’s a tendency for the individual to begin to glaze over, right up until I mention that M struggles with multiple food allergies as part of his condition. At that point, their interest sparks up again as everybody inevitably knows somebody who can’t eat wheat/gluten/dairy* (*delete as appropriate). Now, imagine trying to discuss a rare and virtually unknown condition over the idiosyncrasies of the mobile phone network – nigh on impossible.

However, despite it all, I’m not disappointed with the article that was written. Okay, so the headline was misleading given our actual aim is to raise some much needed awareness about EGID rather than food allergies, but the reporter did include lots of important and accurate information. I was delighted that she included some words about FABED, without whom I doubt I’d have found the confidence to even approach the press to report about M, as this was the bit that was missing from my radio interview on Friday. To my delight, the paper has also agreed to run a small follow-up piece next week about our fundraising efforts this week and report how much money we have managed to raise for FABED. That will be my opportunity to include FABED’s website details and to encourage our community to consider supporting this worthy cause.

With all the excitement of 2 appearances in the local press within the space of a week, this media mogul decided she needed a break of the mundane task of family dinner and instead tonight’s menu was courtesy of Mike:

	M	Me	Mike
Breakfast	Home-made bread (1 slice) with free-from spread	Sliced pear	Bowl of: Free-from cornflakes Rice milk
Lunch	Sesame snaps Fruit buttons (blackcurrant) Chocolate cupcake (1/3) Home-made rice bread (1 slice)	Sakata rice crackers (6) Cucumber Celery Peanut butter	Brazil nut & sultana cereal bar (2) Mango fruit smoothie Apple
Dinner	2x home-made rice bread (toasted) Baked beans Pears (1/4)	Taco shells (4) Home-made chicken satay (chicken, onion, garlic, courgette, mushrooms, tomato, peanut butter, coconut cream, chilli flakes) Home-made coleslaw (red cabbage, carrot, onion, egg-free mayonnaise)	Taco shells (4) Home-made chicken satay (chicken, onion, garlic, courgette, mushrooms, tomato, peanut butter, coconut cream, chilli flakes) Home-made coleslaw (red cabbage, carrot, onion, egg-free mayonnaise)
Snacks	Sliced pear (1/4) Nakd cocoa orange date bar Dried apricots (3) Sakata rice crackers (2) Peanut butter

Eosinophilic Awareness Week 18th-24th May 2014

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This week I’m delighted to welcome Kate from The Recipe Resource as my guest blogger. Her blog was set up to support those catering for multiple food allergies, particularly in children and Kate is a fellow EGID Mum, who I’ve been privileged to meet through the fantastic FABED. I was going to write a post to tell you all about Eosinophilic Awareness Week, but found Kate had already done an amazing job on her own blog and she kindly agreed to let me share it with you all:

18th-24th May 2014 is Eosinophilic Awareness Week. Read about EGID here

Gastro research is drastically UNDER FUNDED. It is not “glamorous” and rarely on the radar for celebrities and focus groups, and rarely attracts public interest unlike cardiac care and cancer research. Gastro conditions are badly neglected in the UK when it comes to research funding allocation, but without research treatment and outcomes are not likely to improve much.

Approximately 1% of the total amount of medical research funding available in the UK can be accessed for Gastro research. There are currently no listed projects specifically for Eosinophilic Disorders on the National Research database. GOSH are running a Gastro Research Project that will include related conditions/problems. Alarmingly, children with allergic gut conditions are reaching epidemic proportions according to GOSH.

No one knows why the UK has the highest incidence for Allergy. I went to Westmnister to attend the All Party Group for Allergy in October 2013 and heard how in the 19th Century, a study into Hay Fever took two decades as it was so rare and there were insufficient people to include in the study. Today it is incredibly common. The UK tops the league table in the incidence of allergy in its population, with Australia second – which is interesting as their population obviously share a similar root. Allergic gut conditions are becoming common and hugely problematic for NHS paediatric services and Eosinophilic Disease is a specific subset of this group.

FABED is the main UK charity supporting families with members (adult and children) who suffer from eosinophilic disease.

FABED are UK partners supporting the United States Eosinophilic Awareness Week. This is coordinated by APFED. Two years ago they made this video to promote awareness.

Read more about Eosinophilic Diseases here.

During Eosinophilic Awareness Week, do something to raise awareness. Tell someone about EGID and the appalling lack of funding for gastrointestinal disorders in the UK.

This blog was first posted on May 9th 2014 at The Recipe Resource here

7 years to diagnosis

Searching for an answer

Tag Archives: allergic reaction

Not a Universal success

Hay fever

Eye adventures

Allergy Adventures

Allergy & Free From Show, London 2014

Gnocchi

Back to basics

Medicines galore!

Lessons about the Press

Eosinophilic Awareness Week 18th-24th May 2014