Tag Archives: Awareness

Allergy & Free From Show, London 2014

allergy show

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.

cupcakes-e1404998111261

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!

milkWe 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.

A Grand Day Out

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

20140705_164656This amazing opportunity to watch the qualifying races for the British Grand Prix was thanks to the GOSH events and charity team, who work with Bernie Ecclestone and his team at Silverstone to fundraise for the hospital.  They have been working together to raise much needed money for 10 years, raising a whopping £4million for the hospital.  Each year they offer 30 GOSH patients and their families the chance to visit the race track over the 3 days of the Grand Prix event.

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

20140705_161022

20140705_105949We didn’t have long to wait and were delighted when Mike got the phone-call to say the application had been successful and 3 tickets for the Saturday were ours.  M was very excited to be going and the opportunity couldn’t have come at a better time for him as he’s been struggling with some big flare-ups from the EGID recently as well as the introduction of 3 new medicines to his daily regime, which has been challenging for us all.  The day had become a real focus for him and he was determined to have a great time there.  It was also fantastic to be able to include G in the day out as she rarely benefits from M’s illness and is frequently relegated to second place as we try to deal with him.  She was as excited as the boys and I hoped she would enjoy herself as much as I knew Mike would!

20140705_112530So, whilst my lucky trio spent their day meeting the likes of Eddie Jordan, exploring the Paddocks and the garages, polishing a F1 car and experiencing everything that Silverstone had to offer, I spent a quiet day on my own in Milton Keynes.  I explored the shops, enjoyed lunch at John Lewis and spent a few idyllic hours peacefully writing my blog and reading in the library.  The children have hardly stopped for breath since Saturday, telling me tale after tale about their grand day out and it’s all thanks to the hard work and generosity of those at both Silverstone and GOSH.

20140705_113143

 

Back to basics

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

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

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

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

junior masterchef

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

And now, the end is here…

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

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

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

M

Me

Mike

Breakfast
  • Bowl of free-from rice pops
  • Maple syrup
  • Rice milk
  • Toast (1/2)
  • Peanut butter
  •  Rice flour toast (2 slices)
  • Peanut butter
  • Rice flour toast (2 slices)
  • Rice milk
Lunch
  • Bruschetta made with:
  • 4 slices rice flour toast
  • Tuna, corn, cucumber & egg free mayonnaise
  • Mackarel


  • Apple (1/2)
  • Pear (1/2)

 

  • Bruschetta made with:
  • 2 slices rice flour toast
  • Tuna, corn, cucumber & egg free mayonnaise
  • Mackarel


  • Pear (1/2)

 

  • Bruschetta made with:
  • 2 slices rice flour toast
  • Tuna, corn, cucumber & egg free mayonnaise
  • Mackarel


  • Apple (1/2)
  • Pear (1/2)


 

Dinner
  • Baked sweet potato
  • M&S Venison sausages (2.5)
  • Olives
  • Pistachio nuts
  • Carrot cake cupcake
  • Sainsburys Free-from sausages (1.5)
  • Sweet potato
  • Salad – lettuce, cucumber, tomato, avocado
  • Baked sweet potato
  • M&S Venison sausages (3.5)
  • Green salad
  • Banana
  • Nectarine
Snacks
  • Nakd cocoa orange date bar
  • Fruit buttons (lemon)

The best laid plans…

Cupcake anyone?

Today is the penultimate day in National Eosinophil Awareness Week and our plans were to raise awareness and funds for FABED at school.  I had approached M and G’s headteacher last week to ask if we could hold a cake sale – and yes, I do realise the irony in that choice – during today’s Sports Day.  He readily agreed and the call went out, letting parents know about our cause and asking for donations of cake, and cash, for the day itself.  However, at around 2am this morning, when I heard the rain pounding down outside the bedroom window, I realised with a sinking heart that there was no chance of Sports Day happening and I would need to agree an alternate plan with the school to get rid of the 100 M-friendly cupcakes that were littering our kitchen. 20140523_152824 Fortunately, school have been fantastically supportive of our fundraising efforts this week and we were able to hold the cake sale at the end of the school day instead. Despite the last minute change to our plans, we raised an amazing £87 for FABED and even managed to hand out some information flyers about EGID to interested parents.  I was encouraged to be told by one parent that she had never heard of EGID before receiving the e-mail about the sale and so had gone on-line to find out more about the condition.  That, for me, has made all our efforts this week worth-while.

10368328_10152062730306123_2476405082926815390_oM and G were also keen to raise awareness with their teachers and late Wednesday evening, I came up with a plan that would get our message out.  Thanks to the generosity of FABED, I had a stash of their pens at home – bright pink and bearing the FABED logo – and, following a hasty head-count of the members of staff in the school, realised that there was enough for every teacher to be given one.  I painstakingly cut out pairs of glasses from “FABED-pink” paper, glued them to hand-made white card tags, inscribed them with the words “I am EGID aware..are you?” and attached the tag to each pen.  The end result was effective and M was delighted to be able to take them in to school with him this morning and hand them out to the teachers.  We had lots of positive feedback as they received their pens from him and I hope that this will encourage them to also find out a little more about EGID.  Knowing that at least 3 teachers have decided to use the FABED pens as their dedicated register pens assures me that it’ll be a constant reminder of EGID and not just a nice thing that happened on the Friday before half-term.  Not content to leave our awareness-raising with just school today, M also took some pens and left-over M-friendly carrot cake cupcakes to Stagecoach tonight for his teachers there to enjoy.  He’s been fab at handing them out today and has grown in confidence about explaining what it’s all about – as long as Mummy’s alongside to lend a helping hand when needed.

20140523_202419On the food front, Mike decided to eat exactly the same food as M today, matching him mouthful for mouthful, even down to the obligatory serving of Neocate at the end of the day.  I chose not to do the same this year as M has been off his food this week due to his flare and I need to keep my carbohydrate intake up to keep my T1D on an even keel, although I too have endured enjoyed a glass of Neocate!

M

Me

Mike

Breakfast
  •  Sliced pear
  • Black coffee
Lunch
  • Sakata rice crackers (4)
  • Free from spread
  • Fruit stars
  • Sesame snaps
  • Orgran Mini chocolate Outback biscuits

 

  • Rice flour toast (3 slices)
  • Smoked salmon trimmings mixed with cucumber, tomato and egg-free mayonnaise

 

  • Sakata rice crackers (4)
  • Free from spread
  • Fruit stars
  • Sesame snaps
  • Orgran Mini chocolate Outback biscuits


Dinner
  •  4 tbsp Risotto (Arborio rice, onion, garlic, bacon, courgette, mushroom, corn & vegetable stock)
  • 150mls rice milk
  •  Risotto (Arborio rice, onion, garlic, bacon, courgette, mushroom, corn & vegetable stock)


  •  4 tbsp Risotto (Arborio rice, onion, garlic, bacon, courgette, mushroom, corn & vegetable stock)
  • 150mls rice milk


Snacks
  • Carrot cake cupcake
  • Nakd Cocoa Orange Date bar
  • 1x 350mls Neocate Active flavoured with Crusha strawberry milkshake syrup
  •  1x 350mls Neocate Active flavoured with Crusha strawberry milkshake syrup
  •  Carrot cake cupcake
  • Nakd Pecan Pie Date bar
  • 1x 350mls Neocate Active flavoured with Crusha strawberry milkshake syrup

If you would like to donate to FABED and the wonderful work they do supporting families like ours coping with children with EGID, please see their JustGiving page at https://www.justgiving.com/FABED/

 

Medicines galore!

M's daily batch of medicines

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

sweetsAs 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

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.

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.

NST (2)

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.

feetup

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
 

 

 

M’s Daily Bread

When our journey to reaching a diagnosis for M started at GOSH 3 years ago, we never could have imagined how radically his life, or ours, would be changed.  It was incredibly difficult to remove so many things from his diet and I will never know how our amazing 5 year-old accepted this new way of life with so little resistance.  Over the past 3 years I’ve spent a lot of time developing recipes to allow both G and M to enjoy the same sort of treats as their friends, be it traybakes, cakes or biscuits, all with varying success; but the one thing I’m yet to perfect is bread.

G is able to eat the wonderful Genius bread, which we discovered back in 2009 when she had the most difficult diet in the family, being wheat-, dairy- and oats-free.  That discovery made a big difference to her life at the time and we were once again able to easily enjoy picnics and packed lunches without G feeling like the odd one out.  Unfortunately, M has not been so lucky.  Genius bread contains egg, which is still a no-go for M despite 3 attempts to re-introduce it into his diet, and also potato starch.  Instead, he is left with the dubious pleasure of Ener-G brown rice bread, which really is only just about edible when toasted and, I suspect, only then because there isn’t a good alternative.

I have attempted a couple of bread recipes, but have never really ended up with a loaf that M has enjoyed enough for me to make again.  As I unexpectedly have him at home from school due to his tummy bug and the resultant flare, I thought we’d spend some time in the kitchen and attempt this most recent bread recipe which I discovered on the Doves Farm website.  I had all the ingredients in the cupboard, so we found everything we needed, washed our hands and started baking.  M enjoyed weighing and measuring the ingredients out and it was a great opportunity for him to practice his reading skills without really realising it.  Everything looked good when it went into the baking tin, though M was not impressed by the 90 minutes proving it needed or the fact that it would then take a further hour to bake.

The best rice flour bread!

The best rice flour bread!

The end result was simply spectacular.  The loaf had an amazing crust, the dough was cooked through and the grainy nature I’ve come to fear in anything baked with rice flour was not overly apparent.  The smell of fresh bread baking has been missing from our house for a while and it’s fab to know it will be making a reappearance on a regular basis.  G and M had a warm piece of bread each, straight from the oven and covered with a generous lashing of their free-from spread.  Their verdict?  Delicious!

 

Today saw a small return to M’s depleted appetite, so hopefully he’s on the mend and will back to his bubbly self soon enough:

M

Me

Mike

Breakfast
  • Smoothie (1/2 banana, 5 strawberries, 200mls rice milk)
  •  Orange
Bowl of:

  • Free-from cornflakes
  • Rice milk
Lunch
  • Sakata rice crackers (4)
  • Free-from spread
  • Fruit string

 

  • Sakata rice crackers (6)
  • Cucumber
  • Celery
  • Peanut butter
  • Sliced pear

 

  •  Left-over chicken casserole and rice
Dinner
  • 4x sweet potato wedges
  • Pork belly slice (1/2)
  • Cucumber
  • Apple (1/3)

 

  •  Sweet potato wedges
  • Pork belly slices (2)
  • Courgettes
  • Mushrooms
  •   Sweet potato wedges
  • Pork belly slices (2)
  • Courgettes
  • Mushrooms
Snacks
  • Fruit buttons (blackcurrant)
  • Capri sun orange drink
  • Brazil & Sultana bar (1/2)
  • Rice bread (1 slice)
 

Quiet day

After the excitement of an early start to our awareness week at the end of last week and the unexpected challenge of a sickness bug for poor M on Friday night, we had something of a quieter day today.  Mike and I both have some dietary challenges to face in the week ahead and Mike’s started today with a business trip, which needed some very careful and canny purchasing of lunch whilst he was out on the road.  He was reasonably successful, though he found the choices extremely limited, especially given the further restrictions to M’s diet over the last year and the prices higher for the few items he could choose to eat.

One of the things we’ve been encouraging M to do since his diagnosis, is to develop the confidence and skill to explain a little about his condition and share information about his food allergies with new acquaintances.  During this past week, I have been proud to discover that he has been doing this and doing a pretty good job of it, all things considered.  He has been able to give an explanation that has partly explained his food allergies and, in both cases, the Mums he’s been chatting to have been comfortable enough to approach me and ask more questions about EGID.  There is an alarming lack of knowledge and information concerning EGID, but this wonderful information flyer, produced by FABED, gives an easy-to-understand explanation of what is a complex condition:

NEAW_Flyer-page-0

 

And, just to finish today’s blog post, here’s our meals for the day.  As you can see, M is struggling with a poor appetite because of the bug, so getting anything into him is a win right now, however small it is:

 

M

Me

Mike

Breakfast
  • Banana (1/4)
  •  Sliced pear
Bowl of:

  • Free-from cornflakes
  • Rice milk
Lunch
  • Nakd Berry Delight date bar

 

 

  • “Chicken on a stick”
  • Eat Natural Brazil & Sultana bar (2)
  • Apple
  • Banana
Dinner
  • Orgran Mini Outback chocolate animals
  • Smoothie (1/2 banana, 4 strawberries, 100mls rice milk)

 

  • Rice
  • Home-made chicken casserole (onion, garlic, chicken, mushrooms, courgette, carrot, corn, tomato, coconut cream, chicken stock)
  • Rice
  • Home-made chicken casserole (onion, garlic, chicken, mushrooms, courgette, carrot, corn, tomato, coconut cream, chicken stock) 

 

Snacks
  • Fruit buttons (apple)
 
  •  Blueberry smoothie

An early start to Awareness week

local_radio_graphicNational Eosinophilic Awareness Week started today, but my bid to raise awareness of this rare condition in fact started on Friday afternoon.  Last year, Mike and I looked to raise awareness amongst our work colleagues, so my plans for this year obviously had to be bigger and better and I started by e-mailing the local press to see if anyone would be interested in running our story.  To my delight, late last Wednesday I was invited to appear on our local BBC radio station to talk about M, EGID and coping with the daily battles we have to face, including cooking for a child with multiple food allergies.  I accepted the offer and Friday afternoon saw me heading into the BBC building with a batch of freshly baked M-friendly cupcakes to share with the presenter and other guests.

 

10348778_10152049176741123_2166202480088495019_oThe cakes were well received, even by the security guards, who were keen to find out more about why I was bringing the cakes into the studio and enjoyed the M-friendly treats I left with them after the show. It was an amazing experience and I can’t thank our local radio enough for giving me the opportunity to get the message about EGID out into our community.  I was able to share, both on and off air, a little about the challenges those of us living with EGID have to deal with and the prognosis for M and children like him.

But, our Awareness week activities don’t stop there.  This time last year, I wrote about our decision to “eat like M” during the week:  one year on and we’re repeating the experience, although we have the added challenge of dropping raisins, raspberries and potatoes out of the diet too.  Actually, this isn’t as tough for me as it is for Mike – I’m not a big fan of raisins and can’t eat potatoes at all due to my own intolerance to them.  We have some more awareness-raising events planned for the week ahead, but for now, I’ll leave you with our meals for the day:

M

Me

Mike

Breakfast
  •  Sliced pear
Bowl of:

  • Free-from cornflakes
  • Free=from rice pops
  • Rice milk
Lunch
  • Roast chicken
  • Sweet potato wedges
  • Corn
  • Peas
  • Carrots
  • Roast parsnips
  • Really not dairy mayonnaise



  • Roast chicken
  • Sweet potato wedges
  • Corn
  • Peas
  • Carrots
  • Roast parsnips
  • Really not dairy garlic mayonnaise
Dinner
  • Rice bread toast (2)
  • Peanut butter
  • Orgran tinned spaghetti
  • Apple (1/2)
  • Cucumber

 

  • Corn tortilla chips
  • Home-made tomato salsa (Tinned tomatoes, onion, garlic, chilli flakes, chilli powder, olives, corn)
  • Home-made cucumber raita (coconut cream, chopped cucumber, chilli flakes)


  • Corn tortilla chips
  • Home-made tomato salsa (Tinned tomatoes, onion, garlic, chilli flakes, chilli powder, olives, corn)
  • Home-made cucumber raita (coconut cream, chopped cucumber, chilli flakes)

 

Snacks

 

 
  •  Dried apricots