Tag Archives: FABED

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
 

 

 

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

Eosinophilic Awareness Week 18th-24th May 2014

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

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

Another birthday celebration

Guess what?

Today marks the first birthday of this blog.

First birthday

It seems unbelievable that I have spent 12 months writing about our experiences over the last 8 years and sharing our struggles, our successes and more than a few recipes to boot.  We’ve had our highs and our lows, but with the support of our family, our friends, medical professionals and other bloggers we know we can keep on going.  When I started the blog I wanted to be able to share the story of M’s life and our fight to get a diagnosis for him and the best care and support we could.  My aim was to raise awareness of this rare and little known condition and I always said that if I managed to make a difference to just one other person who was living our experiences, then I would be more than happy.  Amazingly in the last couple of months, I’ve received kind messages that have told me that I have achieved that goal.

A few statistics to share about the last year:

  • Date of first post:                          March 13th 2013
  • Number of blog posts written:    95
  • Number of “followers”:                297
  • Most popular post:                       To whom it may concern
  • Total views of that post:               220
  • Highest number of hits:               165 in one day
  • Number of recipes shared:          27
  • Most popular recipe:                    The best chocolate cake ever
  • Total number of comments:        218
  • Total number of views:                 7,867

As ever, we’ve no idea what lies ahead for M, for G or for us as a family, but the one thing I do know is that I will continue to share our journey with you and every development as it happens.

“Nothing can hold us back”

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This week is “Feeding Tube Awareness Week” and a great opportunity to raise awareness and garner support for those brave children and young people who are currently living with a tube to provide essential nutrition.  Their motto for the week is “Nothing can hold us back” and for many a feeding tube allows them to take precious steps forward.  There are a number of different feeding tubes that can be used: NG-tubes, NJ-tubes and TPN to name just a few, and you can find out more information about all of these from The Feeding Tube Awareness Foundation here.  The reasons for a feeding tube are even more varied then the number of tubes available and can include premature birth, EGID, Cerebral Palsy and over 200 other conditions and diseases.

As well as the initial trauma of facing the decision to start your child on tube-feeding and the challenge of placing the tube, families then have to learn all about giving feeds, looking after the tubes, replacing them when necessary and how to deal with the little complications that can make a big difference.  The prospect of tube-feeding can be a frightening one, but these children are able to go to school, play and participate in after-school activities alongside their peers with the right support given by trained medical staff, friends and family members.

M

Ms first tube

Whilst our journey so far with M has been tough and continues to throw new challenges at us from time to time, this is one thing that so far we have not had to face.  M has had feeding tubes twice – once when he was first born so prematurely at 33 weeks and secondly, for just a week back in October, when he was admitted to GOSH.  As I recounted then, it took a while for my brave boy to become accustomed to it and to stop worrying that it might fall out at any moment, but he did.  We know that we are extremely lucky as there are a number of EGID children out there who are dependent on a feeding tube to give them the daily nutrition they need.

October 2013 and another tube

October 2013 and another tube

The decision to start your child on such a path is a difficult one for any parent to make and there are no guarantees as to just how long that tube might be in place. At the moment some of our wonderful FABED friends are surviving life with a feeding tube, some have finally managed to say goodbye to that tube and others are contemplating whether a tube may be the next step for their child.  To all those families, this week is for you and about you and the support and understanding you all deserve.

You can read more first-hand experiences here:

Mr Sandman

Sleepless nights are the bane of many new parents’ lives.  You don’t realise just how dependent you are on 8 uninterrupted hours until you no longer have them.  We were truly lucky with G.  She was one of those very irritating babies who slept through from 6 weeks old and quickly developed a habit of 10-12 hours each night, meaning we never really suffered with early mornings either.

The first few weeks of M’s life lulled us into a false sense of security.  He spent many of those early days sleeping, something that is typical of preemie babies I’ve learned.  However, once we’d hit, and passed, the magical point of his due date, everything changed and not for the better.  From the age of about 4 or 5 months to the present day, I can count the number of full nights’ sleep on the fingers of one hand.  Actually, I don’t even  need that hand to enumerate those memorable occasions because the only undisturbed nights that Mike and I have enjoyed in the last 8 years are those when M has been staying with my Mum.

20140203_190757Last year, we thought we had finally turned a bit of a corner with M’s sleep habits.  We had persuaded him, through the lure of sticker charts and a much-desired Lego Millennium Falcon, to start going to sleep in his room.   His bedroom was revamped for his birthday to match his passion for everything Lego Star Wars and became a place befitting of his 7 year-old status.  I won’t pretend that it was all plain-sailing, but we gradually moved away from the constant shouts downstairs for food or stories until he was finally falling asleep in his own bed, albeit close to 11pm most nights.  His 2am visits into us also slowly started to disappear and it really felt like the sleep issues were on their way out.

Unfortunately, we were once again counting our chickens too soon and, in the middle of 2013, everything reverted back to the old “norm” with a bump.  I can only assume that a big part of this dramatic shift was the unexpected decline in M’s health that had started in the April.  Since then, M has been almost completely unable to fall asleep by himself and spends almost every night pleading with us to “settle” him at bedtime.  It doesn’t matter has much settling we do, within minutes of us leaving him tucked up in bed and heading downstairs for our own dinner or jobs to do, M is up on his feet, singing and dancing to whichever CD is that night’s pick.  The rhythmic thuds that accompany our evening meals are a constant reminder of just how awake he is, but he seems unable to switch off and relax.

Around 9.30pm the questions start floating down the stairs: “Can I have a snack because I’m starving?”, “I need a drink – I’m dying of thirst” or, my personal favourite, “What time is Mummy coming to bed?”  It is this last request that inevitably traps me between a rock and a hard place.  If I go upstairs after about 10.15pm, M will climb into bed beside me and be fast asleep within 10 minutes; BUT any attempt made too early is a complete disaster.  wheres wallyM will just lie next to me, hunting for Odlaw, Wenda and the rest of the Where’s Wally? gang, chattering away and almost without fail, I will be in dreamland before him.

Since Christmas, things have been getting progressively worse and Mike and I are both almost at wits’ end.  This last weekend was spectacularly bad on the sleeping front and we’ve had to do some quick thinking to try and get things back on track.  One of the biggest complaints we have from M is that he is hungry, regardless of how much he’s eaten throughout the day. hot choc To avoid a repeat of Saturday’s demand for a snack at 11.45pm, we have introduced a relatively substantial snack for M before he goes to bed.  As soon as both G and M are washed, in their pjs and otherwise ready for bed, they can each select a snack or two to have, along with a mug of either hot chocolate or hot milk and honey.  We tried this for the first time last night and appear to have scored an early success with no subsequent food necessary before he went to sleep.

Secondly, we’ve given M an incentive to improve his behaviour at bedtime and reduce his demands on us.  We’re off on a big family holiday later this year and both children are keen to earn some spending money for whilst we’re abroad. M’s modest request for £5.90 for the 3 weeks has been judiciously upped a little and he can earn stickers (yes, we’re back to that damn reward system once again) for working hard to achieve this target.  The stickers are awarded retrospectively, so last night’s bedtime routine and today’s behaviour will be assessed at snack-time tonight and stickers given accordingly.

Draining as all this is, I have been able to draw some comfort from discovering that we are not the only EGID family struggling with sleep issues at the moment.  Another Mum recently posted about her anxiety over her child’s sleeping on the FABED forum and asked for help. Within a relatively short space of time, replies flooded in from across the country, from other parents who have been there and who are quite probably still dealing with it.  I found it particularly interesting to read the perspective of a now adult EGID-sufferer, who was able to explain to us all exactly how the condition can impact on the body and therefore on sleep.

sandman

So, for all you parents out there who are longing for a good night’s sleep, believe me when I say that I feel your pain and will be hoping that the sandman visits your homes sooner rather than later tonight.

Ringing in the New Year!

As we count down to the New Year, I have to confess to being glad to saying goodbye to 2013.  The last 2 years have been tough for our family and I’m looking forward to a more positive 2014.  We’re still not at our ideal place with M, but we now have a diagnosis and every day sees us taking a step – be it forwards, backwards or just to tread water to stay where we are – and we’re hoping to make some real progress in the 12 months ahead.  All that being said, there have been many highlights of 2013, not least of which has been the adventure of starting this blog and below are a few of my favourite:

Wishing you all a happy and peaceful 2014. May your new year wishes be fulfilled.

Our charity needs YOU!

Fabed needs youFABED (Families Affected by Eosinophilic Disorders) is a charity close to our hearts.  As I’ve mentioned on many occasions, FABED is a small charity supporting families like ours who are living with the challenges of a child, or children, diagnosed with eosinophilic disorders.

In the last 12 months since we’ve had M’s diagnosis, we’ve struggled to get to grips with the implications of EGID for M: how we can manage his health, coping with the impact of it on, not only M, but our family as a whole and how we communicate and explain this chronic illness to those surrounding us.  In particular, we’ve found it hard to fully explain the effects of EGID on M to his teachers and school as they rarely see the negative side – the sleepless nights, the chronic pain, the diarrhoea and the frustrations – because M just gets on with life at school and keeps his melt-downs for home.  Without the support of FABED and its wonderful families, I’m not sure how well we would have coped.

FABED

FABED is keen to produce an educational leaflet specifically for schools, separately aimed at both the Primary and Secondary education sectors. This will raise awareness of a rare, but increasingly prevalent condition, which can take years of struggle to diagnose. Helping schools to understand this disease will help alleviate just one of the many areas that families have to deal with.

This is where YOU can help.  Galaxy Hot Chocolate are looking to help small, local community based projects and community minded people through their GALAXY Hot Chocolate Fund. Eighty £300 awards will be given to help small groups and we would love for FABED to receive this money and achieve their goal.

A vote from you will make a big difference to children like M and families like ours, so please take a moment and add your vote.  Just click on the link below to cast your vote and remember to confirm from the e-mail sent to you:

http://www.galaxyhotchocolate.com/fund/fabed

thank-you-languages

A Parent’s Survival Guide to staying in hospital

I have lots of experience of extended stays in hospital, but the proposed week ahead with M felt more daunting than normal.  It might have had something to do with his very obvious nerves and reluctance to go, but I worried about how I was going to keep him entertained and comfortable for a week filled with heavy-duty bowel prep, anaesthetic and scopes.  I turned once again to the support of FABED, where I knew a number of parents had experience of, not only an extended stay at GOSH, but on Kingfisher ward too, and asked them for their suggestions of essential things to take with us.

So, it is with many, many heartfelt thanks to those wonderful individuals, we survived the week and I’ve put together a list of the “must-haves” for a hospital stay:

20131020_205620

  • A supply of easy-to-store snacks and squash for both parents and child – remember that your child might be on a restricted diet in preparation for their procedure, so be flexible and prepared to nip out to a local supermarket to add to your stock if needs be 
  • I-pad/tablet/DS plus games AND chargers – these were invaluable as M was confined to bed for a lot of the week.  I loaded a number of his favourite audio books on to my tablet, which gave M something to listen to at bedtime.  A crucial part of his regular night-time routine
  • Favourite books – a mix of something your child can look at on their own as well as old favourites that you both can share
  • Favourite toy/comforter – M’s cat travelled with us as always and went almost everywhere with M.  It’s not so much that M struggles to sleep without him, but he’s a source of comfort when uncomfortable medical procedures have to be endured

    Cat ready in his scrubs for the week ahead

    Cat ready in his scrubs for the week ahead

  • Colouring In/Stickers/Craft activities – anything that can keep them occupied whilst they’re in bed.  A friend suggested we could start on our Christmas cards whilst there – I just wish I’d had time to sort that one out as it would have been something we could have begun with no pressure of having to complete it when M had had enough
  • School-work – ask if your child’s school is prepared to send some work for them to do during their stay.  Needless to say, M was extremely reluctant to do any during the week, but we persevered and read some books as well as practised some spellings ready for a test on his return

    A little reading and some spellings to learn

    A little reading and some spellings to learn

  • Headphones/ear-plugs – if you find it difficult to sleep in a quietly busy location, then these will be invaluable to making sure you get some rest.  We bought a set of headphones for M, which were a real life-saver during the week.  He was able to listen to the TV and audio books without disturbing anyone else and that really helped him to settle to sleep each night
  • Mini lego sets/action figures – M has recently enjoyed playing with some plastic soldiers that he “won” when we were last on holiday in Canada.  For this stay, I bought a pack of them which included tanks, planes, helicopters and bunkers – hours of fun that constantly changed and that could be put away quickly too
    M and Daddy putting together some new Star Wars Lego

    M and Daddy putting together some new Star Wars Lego

     

  • Top trumps or travel games – they’re small, easy to pack and entertaining for at least 5 minutes!  We could play a game and then pack it away as soon as M wanted 20131020_184801
Courtesy of waitrose.com

Courtesy of waitrose.com

  • Clothes – Enough clothes and sets of pyjamas to see you through the week.  As M was having bowel prep, I packed masses of underwear as well as pairs of pjs – it still wasn’t enough, but got me through 24hours without too much stress
  • Warm jumper – for both the child and the parent for when the nights get chilly
  • Washing powder/gel – we went through M’s clothes far quicker than I had anticipated.  Fortunately GOSH has a Patients laundry room with 2 washing machines and 2 tumble dryers.  I was able to run a load through both every evening at a cost of no more than the washing powder to clean the clothes
  • Slippers – I really, really wish I’d thought of taking slippers with us for both me and M.  I didn’t want to wear my shoes all the time, but wasn’t always comfortable to walk around in nothing more than my socks
  • Blanket/pillow – it’s nice to have that extra bit of comfort that reminds you and your child of home.  M had 2 blankets with him, which he curled up with every night whilst giving Cat a much needed cuddle
  • Treats for Mum (or Dad!) – hand cream, lip balm, comfy socks, soft loo roll were among the suggestions and all were invaluable to me for the week

And then. my 3 favourite suggestions, that brought a smile to my face and were in much demand during our week at GOSH:

  • Gin in a tin
  • A sense of humour
  • and a LOT of patience!
Courtesy of tesco.com

Courtesy of tesco.com