Tag Archives: Education

Time for a Dyspraxia update

Over the last 18 months since we received a diagnosis of dyspraxia and visual dyslexia for M, he’s been making some progress and it was good to have a review this week with his Occupational Therapist to see just how far he’s come and what he should be aiming to achieve next.  When he was first assessed, it was noted that he had significant issues with his upper body strength, which was leading to weaknesses with his fine and gross motor skills.  He struggled to hold his cutlery or pencils correctly, couldn’t tie his shoelaces, wouldn’t tackle riding his bike and had handwriting that, at best, bore a passing resemblance to ancient hieroglyphics, assuming they’d been scrawled out by a spider meandering meaninglessly across the page.

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Shoes tied by M

Meal-times have become easier, thanks to the sets of caring cutlery I invested in soon after we met his OT for the first time.  M has grown in confidence as he’s mastered the co-ordination needed to cut up his food himself, although constant reminders to actually use his cutlery are still a main feature at our dinner table!  After a year of having to ask for help to tie the laces on his football boots, M decided he was going to crack that challenge over the summer and having so determined, succeeded quicker than any of us expected, himself included, and was rewarded by 2 new pairs of trainers – with laces – whilst we were out in Florida.  As for the bike, well it’s still something of a no-go area for M right now, but the draw of being able to cycle to his godmother’s house along our local cycle-path, may be all the impetus for learning that we’re going to need this autumn.

However, the one skill that still needs a lot of work is that of his handwriting and was the key area for my discussion with his OT yesterday.  Over the last few weeks, I have been trying to track down some additional support with his literacy skills as we have become increasingly concerned that his school-work will start to suffer if an improvement isn’t made soon.  I contacted both our local Dyslexia Centre and the local branch of Dyslexia Action, to find out what support might be available to M and similar answers came back from both.  There was an opportunity for weekly, 1 hour small group sessions to develop his writing and literacy skills, but although it sounded good, there inevitably was a downside.  The sessions are only run during the day, Monday to Thursday, which would mean that he would need to miss around 2 hours of school a week, by the time you allowed for pick-up and travel.  As the helpful Dyslexia Action representative warned me, “You’ll have to get the school on board first, as they may be reluctant to allow him to miss that much school each week.”

I mused over the decision and discussed it at length with Mike.  Whilst we both know that the time is critical for M right now and he really needs that support, we are also waiting for an admission to GOSH, which will mean at least a week off school.  On top of all his other regular appointments, I felt that it was just too much time absent from his friends and his learning and so decided to put this plan on a back-burner for the time being until we have some more information about the admission.

At this point, like some sort of guardian angel, his OT expressed her own increasing concerns about his handwriting skills and suggested the perfect solution to our dilemma.  She has offered to visit M in school for an hour a week for 6 weeks and will work with him and a member of staff, teaching him how to properly form cursive handwriting and write in a size that makes his writing legible.  handwritingShe will make sure he is sitting correctly, holding his pencil in the right way and knows how each letter should be formed.  His class teacher has said that M is reluctant to use cursive writing, believing that he needs to print instead, so the OT will show him some examples of work from other children she has worked with to convince him that this is the way to go.

I am so delighted that this is being offered by an OT who is as concerned about M’s handwriting and the impact on his learning as we are and, what’s more, wants to actively do something about it. As well as teaching M the skills he needs, she will also be teaching the member of staff about what he needs to be doing in class and how they can encourage him to continue the good work once her 6 weeks are up.  M’s SENCo, who also just happens to be his class teacher this year, has already agreed that the school are happy to accommodate the OT’s visits and now I’m just waiting for confirmation of when the sessions will start.

To ID or not to ID

With our holiday fast approaching, I’ve been considering whether M needs some form of medical ID to carry on him.  The concept isn’t a new one to me as I’ve had a Medic Alert bracelet for years for my T1D and regularly make sure the information held on file for me is up-to-date.  I’ve not previously felt it necessary to have such a band for M, but with his diagnosis of EGID and an increasing number of medicines and allergies to consider, I finally bit the bullet and decided to investigate what was on the market.  Part of the impetus to my search was seeing one of M’s school friends sporting one at our recent local music festival for his T1D and realising that this would be hugely important for those occasions when M is out and about without me or Mike on hand to explain.

medicalert

Whilst my Medic Alert bracelet works well for me, the biggest problem would inevitably be the amount of information needed for M and I felt that it just wouldn’t accommodate it all.  I needed something that would appeal enough to M for him to be willing to wear it all the time as well as having enough room for me to note his name, DOB, emergency contacts, EGID, 12 medicines and 8 food allergies.  No small feat, but – and I doubt this will come as much of a surprise – there is something out there that does all this with ease.

20140803_200524The wonderful ID Band company has a range I couldn’t fail to be impressed by.  From bracelets to necklaces, sports bands to medical bags and the all important kids range, plus a whole host of “spares”, some of which you wouldn’t have even thought of until the moment you need them, there is pretty much everything you could conceivably want.  As well as the more traditional metal panels that you can get engraved with the exact wording you want, they also offer the product I was looking for – a wristband containing a card ID that you can personalise as necessary and the whole band is completely waterproof.  Cautious as ever, I browsed the site to check there was nothing better available, but kept coming back to this one band in particular.  The card ID was big enough to take all of M’s details, I could buy extra cards for when things change and the sizing was ideal for M’s small wrists.  Even better I could get it in green camo, just the thing to appeal to my small boy.

20140803_200443I placed the order on a Thursday afternoon, with my fingers crossed that it would arrive in time for our holiday and to my astonishment, the parcel dropped through our door the very next day.  I filled the information out and presented it to M, hoping that he would be keen to give it a whirl and not reject it out of sight.  I needn’t have worried – M was desperate to try it on straight away and has been more than happy to wear to his holiday club this week.  Once again, a massive double thumbs up from both children (well G wanted one too to state her allergies) and a hearty recommendation from this very satisfied Mum.

Three square meals a day

Last week cooking at school soared to a whole new level and, I have to confess, so did my heart rate when I first heard about it.  I love the fact that both G and M have been able to participate in cooking at school this year and have been involved every step of the way to ensure that they’ve been able to eat whatever they’ve cooked – be that by providing adapted recipes, suitable ingredients or, on occasion, a friendly alternative for them to enjoy after cooking with “normal” ingredients.  A stream of constant communication between myself, the school secretary, both class teachers and the SENCo has been key to this success.

This time round, however, the plan completely changed. The Square Food Foundation were coming into school to cook with the children, one class at a time and when I asked the obvious question – “What are they cooking?” – the school had no idea what was on the menu. The letter home had asked parents to list any food allergies as they knew that some could be accommodated, so I felt confident that G would be okay, but I wanted to understand whether M would be able to taste the food that was being taken back to the classroom after the session, or if I would need to come up with a back-up plan for him.  The Headteacher said that he would be contacting the Foundation himself to ask the question and, armed with the full list of M’s current allergies, he made the phone-call.  To my delight, he was reassured that M would be able to take part fully in the lesson and I agreed to be a parent helper for M’s class to make sure that all ingredients used were definitely safe.

20140710_094912The day eventually came, we got to school and here is where I need to make a very big apology to the organisers from the Square Food Foundation.  I caught sight of the tables and ingredients set up in the school hall and my heart sank.  I saw piles of baguettes, cartons of natural yoghurt and boxes of eggs; and I doubted what they had said.  At first glance I couldn’t see how M could possibly be able to taste the food with those ingredients involved and we started the lesson with me quickly trying to work out if I could fit in a quick dash home to pick up something M-friendly for the tasting afterwards.  However, I was wrong.  As they discussed the different ingredients they’d be using, the children were asked what they thought they could prepare using the eggs and oil:

Fried eggs“….”something yummy“….”something I can’t eat

(you can guess who that last response came from)

Ah yes.  You must be the young chap with food allergies.  What can’t you eat?

20140710_093537As I reeled off the list, the man in charge sagely nodded his head, “Then you will be in our houmous team” and with that comment, all become clear.  The plan was to prepare 3 different dips – houmous, aioli and tzatziki – and assorted crudites during the 30 minutes cooking time.  The class was quickly divided into 3 equal groups and sent to 3 banks of tables, where all the necessary ingredients and equipment were ready and waiting for them. The children had an amazing time.  They were trusted to use sharp knives to chop the vegetables and crush the garlic.  They drizzled the oil, squeezed the lemons and ground the cumin seeds.  20140710_094403Finally, they mixed the ingredients together and plated up their finished houmous and crudites for the class to admire and enjoy.

All 3 dips looked amazing and I am assured by M that the houmous was delicious.  It was a great morning’s activity and I know that G enjoyed her chance to make aioli later in the day too.  So it’s a very big “Thank you” to all the members of the Square Food Foundation who came to the school, taught some new skills to the children and made no fuss about meeting the needs of M in such an amazing way.

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Allergy Adventures

adventureIn 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.

Stickers_5_largeUnfortunately, 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 10outot10also 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.

 

Musical interlude

Music expresses that which cannot be put into words and that which cannot remain silent

                                                                                                                             – Victor Hugo   

Everybody needs a release for the stresses and strains of day-to-day living.  For some it may be sitting down in front of the television with a large glass of something cold, for others it could be something more active to challenge the body to see just what they can achieve.  For me, there are three things guaranteed to lighten my load:  a good book; a successful bake; and music.

piano

For as long as I can remember, music has been a huge part of my life.  When I was growing up, my parents always said they knew when I was finding life tough because the music would slowly disappear from my daily routine.  I would no longer sit at the piano and sing, until eventually that dark cloud would pass and I could let the music back in.  It is amazing to me how certain songs or tunes can evoke powerful memories and the emotions come rushing back.

clarient These days, whilst the piano sits proudly in our sitting room as an important member of our family that I cannot imagine being without, I rarely find the time to bash out a tune or two.  All too often, I find myself surrounded by small children who want to play alongside me, but who don’t have the patience to allow Mummy to teach them the basics.  However, despite a certain reluctance to put in much practice at home, both G and M have chosen celloto learn instruments to play.  We were recently treated to the school summer music concert, which saw both children playing solo pieces, though I’d be hard-pressed to say who had the greater look of concentration on their face – G with her clarinet or M with his cello.

I am delighted that both G and M love to have music in their lives, a fact that I like to attribute to my incessant playing of specially selected compilation albums during both of my pregnancies.  They both listen to CDs at night to help them settle to sleep and we almost always have a CD playing in the car, even for the shortest of journeys.  I maintain that there is a song for every occasion and have been known to coax M out of the darkest of moods by my rendition of any song that springs to mind, often with a slight change to the lyrics to suit the situation.

My biggest musical passion is, and always has been, singing.  Over the years I have had the opportunity and privilege to sing with some wonderfully talented musicians, from my competition-winning school choir to the history-making Cathedral choir and many more along the way.  I have sung with women-only choirs as well as mixed voices and have had the heady experience of performing on my own in addition to singing with groups that have varied in size from less than 10 to over 200.

choir

My current choir is a wonderful group of anywhere between 10 and 20 ladies, who meet weekly to share our love of music.  Each Tuesday I abandon Mike and the children for an hour’s worth of music, laughter and the most amazing friendships I could imagine.  This group of ladies bring a smile to my face without fail and this week’s rehearsal found me giggling so hard that I couldn’t get any semblance of a note out of my mouth.  I was transported away from the week’s dramas with M and instead could just enjoy some time without that pressure overwhelming me.  No matter what the song, we have a great time and it’s been a pleasure to see the choir grow over the last couple of years.  Sometimes the lyrics of the songs really strike a chord and help me express something I had no idea how else to explain.  At our recent concert, one of the other choirs performing sang the song “There’s a hero” by Billy Gilman which really spoke to me of our journey with M and how I feel about our family.  If you don’t know this song, you can listen to it here.

 

 

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