Tag Archives: Conditions and Diseases

Eye adventures

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.

A Grand Day Out

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If 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.

This 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.

We 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!

So, 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.

‘looming marvellous!

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I know, without a shadow of a doubt, that G & M are not the only children across the UK, or indeed the developed world, who are currently obsessed with the latest craze to sweep the nation: Loom-bands. Every day as the children walk up to school with their friends, we pass child after child sporting an armful of bracelets made from these brightly coloured elastic bands. Mike and I even have our own growing collection, consisting of bracelets and rings made by both G and M, in a variety of colours and patterns.

For the uninitiated amongst you, and I know there will be a few, you can create a range of unique jewellery, or charms, or just about anything else you think you might like, from relatively little. All you need is:

one of these….

…a lot of these…

…a vivid imagination and an endless supply of patience.

From the simple single-loom bracelet (where we unwittingly started before I knew that each pattern had a name) to the Starburst and the Inverted Fishtail, my children have been kept occupied for hours designing and making a constant stream of new creations for us to admire. I have discovered loom-bands lurking in unexpected places and have had to think on my feet to enable emergency repairs when, at the last moment, a previously undiscovered fatal flaw threatens the final piece of art.

Just some of the children’s creations

I love this latest craze. It’s not prohibitively expensive as you can pick up a bag of 600 bands and 24 s-clips for under £1; it appeals to both boys and girls, with M and his friends spending time during their mid-morning or lunch-time break to teach each other new techniques; and my pair are spending time after school to work on their bands together, rather than spending the time arguing.

Even better, it is proving to be a great way for M to hone his fine motor skills, which is such a critical part of the occupational therapy for his dyspraxia. Putting the bands onto the loom is tricky and he has to focus on what he is doing to make sure they go in the right places. M has also taught himself how to make some of the different patterns using just his fingers, which is really challenging the strength and mobility of his fingers and hands. We’re yet to see whether this activity improves his pencil grip and his motor skills, but I’m grateful we’ve found something he loves to do which should prove to be extremely beneficial.

The Battle is won

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This has been a surprisingly difficult post to write. I’ve found it challenging to give the details of our progress over the last 4 months following my formal complaint to our local hospital about the poor treatment we received when we were there earlier in the year, without it sounding either overly clinical or emotional beyond belief. I’ve finally resorted to bullet-point format as the steps we’ve taken have been an important part of our journey with M that I want to share, but they don’t need any unnecessary waffle in the re-telling.

24-Feb-2014: Write a formal letter of complaint to the Patient Advice and Liaison Service (PALS) based at our local hospital, giving details of our appointment, what happened whilst we were there and our areas of concern regarding the care they’re refusing to offer to M.

Mar-2014: I also write to our local MP asking for his help in getting local hospital support for M and giving brief details of our poor experiences to date, including a copy of our formal complaint and my blog-posts, so that he has all the relevant facts to hand.

Mar-2014: Receive an acknowledgement of my complaint from the hospital, who advise they are looking into the matter and will send a formal response by the end of April 2014.

Mar-2014: Our MP’s secretary calls from Westminster to express their dismay at learning about our experience and to offer an appointment at his next local surgery to discuss the matter further and to see how he can usefully support us in our quest to get local input for M.

Mar-2014: Receive a copy letter from the General Paediatrician we saw in February giving details of the appointment and what next steps they suggest are followed to help M. Given the date of the letter and the way it is written, it is blatantly obvious that it has been written with my complaint in mind and does little to reassure me that this medic will be fighting M’s corner going forward. The letter stresses that they are concerned about our request for shared care, but that they will refer M to one of the gastro consultants based at our local hospital to see if he will help.

Mar-2014: Same day that we receive the letter from the last doctor, I meet with our MP to seek his advice. He listens with a sympathetic ear and immediately offers to do whatever necessary to ensure M is given the chance to receive local support as well as the care from GOSH. In the light of the letter received, he proposes that we wait to see what the formal response from the local hospital is and whether the referral is successful or not. He also asks that I keep in touch with his secretary and let her know how things progress.

April-2014: A month passes without much movement on either the complaint or the referral front. I contact our GP to ask him to also refer M to the gastro consultant as I am still lacking confidence that the hospital doctor will do a favourable referral given the nature of my complaint. During this wait, we have a planned appointment at GOSH and I am able to discuss with them whether they would support our request for shared care. The gastro team is very supportive of our request and advises that they usually recommend that a general paediatrician is the point of contact locally to avoid any unnecessary conflicts concerning M’s treatment. However, given our local’s apparent reluctance, GOSH agree they will discuss M’s care with anyone in the local hospital.

April-2014: We finally receive a reply from the Chief Exec, offering his apologies for our poor experience as well as giving me their findings about the complaint. He also offers a meeting with both the gastro consultant and a member of the Senior management team at the hospital to see how we can take M’s care forward. There is some confusion as to who will schedule this appointment, but a series of phone-calls on my part and a very helpful admin assistant at their end means that the appointment is finally organised for June.

May-2014: I receive a follow-up email from our MP asking how things are going and reminding me to keep him informed of any changes in our situation. I’m delighted to be able to inform him that we’ll be meeting our local hospital at the beginning of June and agree to let him know how that meeting goes.

June-2014: The day finally arrives and Mike and I head off to our local hospital to meet with members of staff to discuss M’s needs, having left a poorly M with Mum for the duration. Our aim is to get our local to agree to having “shared care” with GOSH, so that we don’t have a repeat episode of our Christmas hell with a M who desperately needed admitting for treatment and nowhere that would take him. The consultant we meet is delightful and we’re thrilled to learn he worked at GOSH for a number of years and, even better, has worked alongside M’s consultant there. He instantly agrees to look after M on a secondary care basis, dealing with our existing issues with recurring constipation/impaction and any emergency situations which may arise. The management team has no choice but to go along with his suggestions and we agree on a system that should work well for us all and will ensure that M gets the very best care at all times. The meeting ends with a follow-up appointment with the consultant 5 days later to deal with the current bout of impaction that M is suffering.

It has not been an easy road to follow and the number of letters, emails, phone-calls and late night discussions that have been flying around is huge – BUT we did it. We’ve got secondary care for M at a local level and a positive way forward for the next few years, which is everything we wanted and which I hadn’t dared to believe was possible. Of course, we still need to see how it all works outs in practice, but the first signs seem positive and we know we’ve got at least one consultant on our, and M’s side.

Back to basics

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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.

And now, the end is here…

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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…

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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. 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.

M 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.

On 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	Rice flour toast (2.5 slices) Peanut butter Honey Allergy-friendly chocolate spread 150mls rice milk	Sliced pear Black coffee	Rice flour toast (2.5 slices) Peanut butter Honey Allergy-friendly chocolate spread 150mls rice milk
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!

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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

7 years to diagnosis

Searching for an answer

Tag Archives: Conditions and Diseases

Eye adventures

Allergy Adventures

A Grand Day Out

‘looming marvellous!

The Battle is won

Back to basics

And now, the end is here…

The best laid plans…

Medicines galore!

Lessons about the Press