Tag Archives: health issues

Have you met Frank*?

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Over the last few months since entering the mysterious world of blogging, I have enviously been reading of fellow bloggers being asked to try out and review a vast range of products.  I’ve wondered how they’ve managed to bring their blogs to the attention of manufacturers and producers looking to launch new products and whether I could even dream of reaching such lofty heights with my own humble blog.

So, imagine my delight at receiving a message at the beginning of the summer holidays from Ben at The Frank* Food Co.  We had discovered this relatively new treat at the Allergy & Free from Show back in June and both children had gorged themselves on the free samples available.  In our ever-constant search for snacks that are not only M-friendly, but healthy and delicious, I was thrilled to uncover another brand to add to my cupboard.

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The company’s strapline states “Frank*Snack Bars are a deliciously indulgent snack bar made with 100% natural ingredients” and comes in a choice of 5 flavours:  Orange & Chocolate, Double Chocolate, Strawberry & Chocolate, Blueberry & Chocolate and Oat & Chocolate.  The parcel that arrived from Frank* contained one of each and the children and I eagerly embarked on our very scientific approach to tasting, reviewing and ranking each one.

The chart below shows their comments and marks out of ten for the 5 different flavours:

 

G

M
Orange & Chocolate Delicious, but needs more orange and less chocolate
Mark:    9/10		 Fantastic

Mark:    10/10
Double Chocolate Very chocolately, very nice

Mark:    5/10

 Too much chocolate, but very nice anyway
Mark:    5/10
Strawberry & Chocolate This one is nice, but needs less strawberry
Mark:    6/10		 Okay

Mark:    7/10
Blueberry & Chocolate Too much blueberry

Mark:    7/10

 Nice, but the blueberry & chocolate flavours are fighting too much
Mark:    9/10
Oat & Chocolate Perfect!

Mark:    10/10

 Perfect!

Mark:    10/10
 
Favourite flavour Oat & Chocolate Orange & Chocolate

The results are clear.  G liked them all, even the blueberry one she was reluctant to try, but felt overall that the fruit flavours were too strong.  She loved the Oat & chocolate one and said she’d pick this one every time.  M liked them all and chose Orange & chocolate as his favourite, though I do wonder if my love for Terry’s Chocolate oranges influenced his decision.  The biggest surprise was that neither child rated the Double chocolate bar that much and although they both enjoyed it and certainly wouldn’t turn it down, they felt it was just too much chocolate.

As for Mummy’s review?  I’m in favour of them all as they certainly provide a healthy snack and are a nice addition to my kitchen.  I wouldn’t give them one every day, but as a treat, they are perfect.

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If you’d like to give Frank* bars a try, you can find a complete list of stockists on their website or you can order on-line for home delivery too.

Rainforest Flapjacks

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Now, you wouldn’t be blamed for thinking that the past 3 weeks have involved little more than baking and eating an array of M-friendly treats.  This week was no exception.  Having attempted the series of lemon recipes as well as the best chocolate cake ever and feeling somewhat delighted with the results, we decided that our next baking efforts were going to be the rather exotically named “Rainforest Flapjacks”.

This recipe came home from school and looked easy enough to adapt for M’s dietary needs.  I will confess right now to having felt a little frustrated by M’s school’s reluctance to cook with him.  The two occasions they have chosen to cook with his class have both conveniently coincided with times when he was away from school.  Do I blame them for not wanting to cope with his complex dietary needs?  Not entirely, but I have had to deal with the fall-out, disappointment and tears at home.

My solution this time round was to suggest to M that he asked for the recipe so that we could attempt it at home.  In due course, the printed sheet made its way into M’s drawer and finally came home in a decent enough state that I could still read the list of ingredients.  Everything was easily substituted for M-friendly alternatives and, in the case of the oats, G-friendly millet flakes.  I had the full complement of ingredients in either the fridge or the cupboard and so we were ready to start.

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As ever, I took my chances and doubled the quantities to make sure I had enough flapjacks to last the week and so we began.  The process was easy, the children loved measuring out the ingredients and the odd bit of a chocolate might have strayed into an open mouth along the way.  We used a bar of the wonderful Moo-free Cranberry and Hazelnuts chocolate which is both soya- and dairy-free, though plain dark chocolate would work just as well.

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The end result was a delight.  Both children devoured the first few pieces without hesitation and the double quantity only just lasted the week.  G even asked if I could make it without the nuts so that she could take a slice for her packed lunches at school from September.

In case you’re wondering what makes them “Rainforest” flapjacks (as Mike asked), my answer is simple.  They contain bananas, chocolate, are perfect for our 2 little monkeys and the name linked in perfectly with M’s topic for school!

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This post is an entry into the Foodies100/Schwartz Flavour of Together challenge – you can add your own exotic Flavour story via this link

Proud Mummy moments

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A little while ago, I wrote a post about everyone needing a hero and pondered on who M and G would adopt as their heroes as they got older.  This week I’m adding to my choice of heroes and am including my children at the top of my list.

In their own ways, they have been brilliant over the last few weeks and I am so proud of them both.  This post is a tribute to them and their awesomeness and will act as a good reminder to me on those occasions when they’re pushing my patience to its very limits.

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Marvellous M

This week I’ve had M’s school report and Stagecoach report to enjoy.  I was equally thrilled with both.  I expected the Stagecoach report to be glowing, after all, as his drama teacher stated, “M was born to perform on the stage”, but I was a little more apprehensive about his school report.  I know his behaviour is impeccable there, but academically this has been a tough year.  The last 5 weeks, since we got the dyspraxia/dyslexia diagnosis, have seen a real turn-around in his attitude to his school-work.  All the aids we’ve put into place have seen him make huge strides forward and he’s much more confident in how well he can do.

To my delight, we also finally got to see the short charity film that M took part in about 6 weeks ago.  It focussed on Domestic violence and is hard-hitting though not overly graphic.  He performed well and enjoyed every moment of the filming.

He’s also understood that G has had to focus on her own school-work (see more details below) and has given her space to just sit down and get on with it.  I was immensely proud of his attitude on the last night of working on it, when he had to entertain himself for the best part of 2 hours as G and I reviewed, finalised and polished her final effort.  I heard not a word of complaint from him and he regularly checked in with me to make sure I knew where he was and what he was up to.

However, it’s not just his reports that have made him my hero this week.  It has been his approach and stoicism to taking his medicine.  As I’ve mentioned several times, his recent flare-up has been hard and has really knocked his faith that things would improve.  The revolution of Grandma’s jam, as mentioned in a previous post, has helped enormously when it comes to his new medicine.

To put it simply, he’s taking it.  Despite feeling poorly, hating the taste and with a depleted appetite, M is taking all his medicines every day without argument, or at least with the minimum of fuss, because he knows he needs to and there is still a small spark of hope that this will help hiding somewhere inside.

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Gorgeous G

I’ve also had the pleasure of G’s music, school and Stagecoach reports to read.  Each report commented on her hard work, positive attitude and determination to give 100% to every new task set.  Despite her nerves, she has performed solos on her clarinet at school and in the end of term performance for Stagecoach and really gave her all.  She listens well, takes instructions and applies them to the task in hand.  She doesn’t have M’s academic struggles to cope with, but she does have to deal with me having to give attention to M at home when they’re doing their homework and she’s worked hard to complete as much of hers on her own as she can.

Mr.G, G’s teacher this year, praised her for being “always cheerful, courteous, co-operative and helpful…very reliable and always willing to help with a smile”; whilst her Head teacher commented that it was an “impressive report” and her continued efforts would see her having a “very successful Year 5.”

G has been working incredibly hard over the last 5 weeks on a project for school, where she had to choose her own topic and complete independent study and research for it.  She decided to write about Canada and has spent her time reading reference books, researching on the internet and talking not only to Mike, but her cousins and grandparents too.  The piece of work she has produced is amazing and she is rightly proud of it.  She finished it by preparing a powerpoint presentation and photo montage to show in class, which was a learning experience for us both as it’s not a piece of software I’ve particularly used before.

Most importantly, despite her disagreements with M and the frequent sibling wars we have in the house, G has also been aware of M’s struggles with his new medicine and has encouraged and cheered him on every step of the way. She has given him massive support and has managed to coax him to take “just one more mouthful” when he’s found it especially difficult and my powers of persuasion are failing.  M is very lucky to have a big sister who will hold his hand and let him cuddle her teddy bear when times are rough.

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Sometimes my children are a challenge and I find myself rolling my eyes as I pull them apart for what feels like the twentieth time that day.  Sometimes I want to disappear from their world and just go back to being “me” – not head chef, not referee, not problem-solver extraordinaire.  Today, I’m happy and proud to be Mummy and to shout out loud about all their achievements.

There's nothing like team-work!

There’s nothing like team-work!

The psychiatrist’s couch

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The thing about blogging is that, as well as sharing our experiences with others and maybe helping those who are facing similar journeys, it has become a form of cheap therapy for me.  I can pour my heart out into my words, delete those that needed to be said, but not shared and publish the rest for the world to see and comment on.  For those of you who know me well, you will understand that I’m not very good at sharing when I’m struggling with life, even to my nearest and dearest, and yet I can express my emotions through a few deft strokes on the keyboard almost without pause.

blogging

My Mum, who I know will be reading this and rolling her eyes (and yes, the phone-call will come later), frequently says she doesn’t understand the need to share everything with the world at large which so many of us do these days, be it through blogging or social media such as Facebook or Twitter.  Is there an easy or obvious answer to that why?  I can’t comment on why others share the most intimate details of their mundane lives, but I know why I do it.  I have a story to tell and life experiences to share.  When I started my blog I couldn’t anticipate how many people would read and follow my musings, but as I approach the 2,000th view of my blog, I am flattered that people have read something that has resonated with them.  I know that some posts will be far more therapeutic for me than interesting for you, my reader, and I thank you that you’re prepared to bear with me and keep on reading.

The rest of today’s post is very much in that vein as life with M is proving difficult right now and I need to lie down and share from the psychiatrist’s couch.

Couch

Since M’s relapse back in April, we have been waiting for his system to settle and for things to improve and return us to where we had been at the start of the year.  Our GOSH appointment in May had reassured us that his gut would repair and they spoke positively about the possibility of trialling one of his forbidden foods and even reducing his medication over the next 6 months.

Unfortunately, life hasn’t turned out that way and instead we are caught in a downward spiral and seem to be sinking fast.  Our weekend at Legoland was a real step back to where we had been and much nearer the beginning of our journey then we were happy to be. As well as the return of multiple soiling accidents with chronic diarrhoea, M has suffered from stomach cramps, overwhelming tiredness, fluctuating appetite and blood in his stools.  He is obviously struggling with his emotions and frustrations and is just generally out-of-sorts.

My conversation with our ever-wonderful dietician last week confirmed my inclination to speak to M’s gastro team as we really need to get him back on track.  I was worried that we would be asked to remove something further from his already restricted diet, but the registrar told me that that wasn’t the way forward right now.  Instead, we are introducing another medicine into the mix to try and suppress the reactions he’s experiencing and are being sent to our local hospital for an abdominal x-ray.

There are no easy answers to this problem for the time being.  We don’t know why his small body has  gone back into hyper-drive in response to the food allergies and we are feeling helpless in our inability to regain some semblance of control.  If the x-ray is clear, which we’re expecting it to be, then the next logical step is another set of scopes, but that isn’t an easy decision to make because of M’s problems with anaesthetic.  We also know that we still haven’t removed the possibility of moving M to the elemental diet from the table either and that seems like a daunting prospect.

The one thing I have learned from the wonderful families we met through FABED is that we’re not on our own and that however hard the next step might seem to us, there will be somebody else out there who has walked that path before us and will hold our hands along the way.

tea

What’s more, a cup of tea or coffee and a chance to escape the EGID world, even for half an hour, is great therapy too.

Fabulous FABED!

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FABED

We have once again enjoyed a busy weekend.  Thanks to the wonderful organisational skills of the dedicated group of parents who set up FABED back in 2005 to support parents and families of children with EGID, we enjoyed an amazing weekend at Legoland Windsor.

Legoland

What made this weekend so special was that it was organised with our EGID children in mind.  A full day to meet other families who are carrying the same load as us and who know how it feels to be fighting a never-ending daily battle that most of our friends just can’t comprehend.  An opportunity for M to meet children who are just like him, suffer from the same condition and have to live with multiple food-allergies to a greater or lesser extent.  A chance for G to meet others whose siblings are constantly in hospital, or making hospital visits and who are often the focus of so much attention.

We met bright and early on Saturday morning and were delighted to see that there were in the region of 40 families there, all of whom had at least 1 child with EGID, though we got to know one family where all 4 children were affected to some degree.  This was our first FABED event, but were instantly made to feel welcome and amongst friends.  We recognised some familiar faces from the Allergy Show a couple of weeks ago and both M and G instantly made some new friends.

hotel

Unfortunately M suffered a bad day, but we had the advantage of being able to seek refuge in the suite at the amazing Legoland Hotel.  There was a dedicated medical room to provide privacy for those who needed it for feeding or medical purposes.  The Suite itself had tea and coffee-making facilities for the parents and a play area filled with Lego for the children to enjoy.  We took an hour and a half out of the day to give M some much needed downtime and the children enjoyed attempting to build the biggest tower possible with some of their new friends.

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The evening showed just how much hard work and thought had gone into making this an unparalleled get-together.  A buffet dinner was provided for the FABED families, with full details of all ingredients used to prepare the dishes and options available to cater for even the most difficult of diets.  Those children unable to eat were able to spend time in the play area, which was next door but out of sight of the food.  M was delighted to be able to choose from such a wide selection of foods and we were reassured that we knew what each dish contained and what he could and couldn’t eat.

As soon as we heard about this day out, we knew we’d be going along.  It would have taken something extreme to keep us away.  M feels so alone in his allergy world that the opportunity to show that he really isn’t on his own and to allow him to chat and get to know other EGID sufferers was one that we couldn’t turn down.  He made particular friends with young R, who is a year older, but feels the same emotions and frustrations as M.  They were able to have an honest chat and M values this new friend who is “just like me Mummy, but he can eat even less, sometimes has to be tube fed and has accidents too.” R’s big sister, F, was a great source of comfort to G also as they share the same experiences of a younger brother with EGID as well as struggling with their own food allergies.

I also got to meet the delightful mumannie123, who writes the blog, Food for Thought: Boweled over by food allergies, recipes and advice.  We have got to know each other a little over the last couple of weeks through our respective blogs, so it was wonderful to finally put a face to the name and spend some real time chatting.  We have discovered that we live in the same part of the world, so I’m looking forward to perhaps being able to meet in person as time allows, as there is nothing quite like having a friend who understands what you’re going through from firsthand experience.

We made the decision to make a weekend of it and stayed the night at the Hotel in an Adventurers Room.  The lego models and details in these rooms are astounding:

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This weekend has been a truly fabulous weekend and my heartfelt thanks go out to FABED and Legoland Windsor for accommodating such a complex range of needs and ensuring that so many families were able to enjoy as normal a day out as possible when dealing with illness.  To this family, at very least, it has made a huge difference and has given us a great resource for support for this journey that we now know we are not travelling on our own.

The Secret of the Swap Box

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Well, I couldn't resist just one more memory to celebrate Fathers' Day!

Well, I couldn’t resist just one more memory to celebrate Fathers’ Day!

This weekend has been a lot less manic than the last.  Other than the obligatory Fathers’ Day celebrations on Sunday, we also had 2 very important appointments to keep on Sunday afternoon.  G and M took their very first individual Speech and Drama LAMDA exams.  It’ll be a wait of another 6-8 weeks until we hear the results, but I’m proud of them both for having a go at this new challenge.

So, we’ve spent time playing games, watching TV, doing some homework and enjoying some quiet family time.  We’ve also worked on a project that has become very important to G over the last couple of weeks – her swap box.

This is an idea that was recommended to me about a year ago by a parent at M’s school.  She had overheard a conversation I was having with a fellow Mum about having to anticipate when treats might be given out in class to avoid having to deal with M’s frustration when he couldn’t have one.  She asked if we’d ever thought of providing a Swap box to be kept in the classroom.

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I looked at her blankly, listened intently and then wondered why I had never thought of such a simple solution to this problem.  The idea really is an easy one.  We provided a box, decorated by M, that was filled with a selection of sweets, biscuits and other treats that were M-friendly.  Whenever M is given a treat for any reason in the classroom – birthday celebrations, leaving gifts, rewards for good behaviour, Advent chocolates or Easter eggs –  he is allowed to take what he’s been given and swap it for a safe alternative from his box.  This means that he never feels excluded from all that is going on and we can be assured that he isn’t being given any food that could cause an allergic reaction.

I had never considered the need for G to have same, but in the last couple of weeks she has been unable to have caramels or chocolates that have been brought into school to share.  I was hoping to maybe make it to the end of term (well there are only 5 weeks left) and sort G’s swap box over the summer holidays, but alas, that wasn’t to be.  G was adamant that she needed one now and so we found a box and allowed her to decorate it this weekend.  I’ve filled it with a small supply of Haribo sweets, fruit snacks and some M-friendly packets of biscuits and she’s taken it into school this morning to stash with her teacher.

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It really is one of the simplest suggestions I’ve come across in dealing with M’s condition and has proven to be invaluable as he has found no need to strop or complain about being different to his friends.  After all, when you’re struggling with quite so many challenges, being able to take part with everyone else is really worth it’s weight in gold.

The importance of doing research

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research

Not long after our January appointment in London, I received a phone-call from one of the research nurses at GOSH.  My details had been passed on to her by the Dietetics team, who felt that M was a good fit for the research project they were currently undertaking.

I listened with interest as she took her time to explain what they were doing and what involvement they needed from us.  The research was looking at the impact of multiple food allergies on the whole family and not just on M, thereby considering the emotional, social, psychological and financial impact as well as the physical symptoms that M suffers.  As soon as we had established that we fitted their criteria, I said yes.  There was no need to consult or discuss with family members, I knew that this was something we had to do.

After 27 years living as a T1D, I have taken part in very many aspects of research and teaching concerning not only my diabetes, but my pregnancy and my eye sight too.  I remember as a child, my parents agreeing for medical students to sit in on my diabetes clinic reviews to learn about treating a child with T1 diabetes.  As an adult, I’ve always agreed to having students in my appointments as I feel that this is a great way for them to get relevant and realistic hands-on experiences in the field.

diabetes

Back in 1998, I had laser eye surgery to correct a diabetes-related complication with my left eye, Diabetic retinopathy.  Unfortunately, the treatment went wrong and my eyesight was reduced to between 5 and 10% in that eye.  The damage caused by both the condition and the subsequent surgery is unusual and for a number of years, student doctors and newly qualified registrars were brought into my appointments to look at the eye for teaching purposes.

As a pregnant diabetic, I was asked to trial a new insulin that they believed would be effective in improving the health of diabetic mothers during their pregnancy.  Not only did I agree, but nearly 10 years on, I am now using that insulin on a daily basis.  That really is fantastic: seeing the medicine I trialled now being used actively in the daily management of diabetes and improving the control for many.  We’ve also encouraged both G and M to be involved in an important study into whether there is a genetic link relating to T1D.

I believe wholeheartedly that research and study is key in finding answers, treatments and cures for the many illnesses that strike people down.  It leads to an understanding of a condition and how best to support those suffering from it.  Without such research, I wouldn’t be around today to write this blog; I would have lost my life to T1D almost certainly within 4 years of diagnosis and those 4 years would have been spent on a “starvation diet”, which was the only known way to manage the condition.  The work of Banting and Best in Toronto, Canada in 1922 saved and changed the lives of millions of people as they discovered, refined and successfully introduced insulin to the medical world.

In comparison, EGID is a relatively young condition.  There is not a great deal known about it, what causes it and certainly no cure for it.  I felt that it would benefit not just the medical world, but also our family, to be involved in a research study that would seek to understand more about it.

questionnaire

We were sent a series of questionnaires to complete, which included:

  • a detailed food diary for 3 days, including any recipes used and how M felt about eating on those days
  • Mike and my opinions about the physical, social, emotional and psychological impact of M’s food allergies on M, on G and on us
  • details of any ways in which the food allergies hampered or changed the way we live our lives
  • M’s thoughts on how he felt about his food allergies and his life.

We filled these out and our return visit to GOSH in May saw us meeting not just with M’s consultant, but also with the Research team.  The meeting itself encompassed the final part of the research – taking M’s weight and height measurements, using a calliper to measure his body fat from a fold of skin on his arm and performing 20 skin-prick tests to common allergens.  The time passed swiftly, M enjoyed meeting the staff, discovered he was participant number 99 and we left having learned a little more about what they were finding out about multiple food allergies and EGID.

The most interesting thing I discovered on the day is that skin prick tests are notoriously ineffective in picking up allergies in children with EGID.  M did not react to a single one of the allergens tested, not even the 5 to which he currently suffers an allergic reaction.  This is apparently a common occurrence in EGID sufferers as their bodies react internally rather than externally in most cases.  I didn’t know this before and explains why previous skin prick tests always came back negative.

The results from this study won’t be available for a while as they seek to increase the number of children involved in it, but I’m glad we could be a part of it.  We feel involved in the process of learning more about this little recognised condition and M is proud that he has helped out.  We would happily do it all again in a heartbeat and if we are asked, the answer will inevitably be yes.  The truth is that no matter what insight this gives, however small, it will have a huge impact on the future lives of EGID children.

Walking a mile

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His shoes

This week has been all about walking a mile in M’s shoes and I’m pleased to say that we’ve done it.  There have been highs and lows to the week, but it’s been a lesson for us all and a challenge that I’m glad we accepted.  We have now become old hands at eating M’s diet and the biggest challenge of today was the evening meal as we ate with my Mum and other family members.

Breakfast and lunch were fairly straight forward as we ate at home from our store cupboard, which, given we’ve been eating as M all week, was mostly filled with M-friendly food.  Dinner, however, was a different matter and, I have to confess here, that we fell off the wagon a little.  Mum had bought salmon for the meal, but they came with flavoured butters – minor failing number 1.  This was accompanied with new potatoes for Mike and M and rice for me; grilled tomatoes and Caesar salad – minor failing number 2, though I did avoid the croutons.

The thing is, I did feel quite guilty for eating something I knew M isn’t allowed to eat, even though tomorrow I will feel no remorse at all, or at least, I’m not expecting too.

M

Me

Mike

Breakfast

            –
  •  Crispbread x2 with peanut butter
  Bowl of:

  • Cornflakes
  • Raisins
  • Rice milk

Lunch
  • Crispbreads x3
  • Ham
  • Cucumber (3 slices)
  • Chips
  • Carrots (2 sticks)
  • Tomato ketchup
  • Crispbreads x4
  • Ham
  • Cucumber
  • Carrots
  • Tomatoes
  • Mango
  •  Crispbreads x4
  • Chips
  • Carrots
  • Cucumber
  • Tomato ketchup
  • Tomatoes
  • Mango

Dinner
  • Salmon
  • New potatoes (3)
  • Peas
  • Corn
  • Cucumber
  • Chocolate bread
  • Strawberries
  • Raspberries
  • Grapes
  • Ice cream

 
  • Salmon
  • Rice
  • Grilled tomato
  • Caesar salad
  • Raspberries
  • Strawberries
  • Salmon
  • New potatoes
  • Peas
  • Grilled tomato
  • Caesar salad
  • Raspberries
  • Strawberries
  • Banana
  • Grapes

Snacks
  • Nkd Berry Blast date bar
  • Ginger cookie
  • Banana (1/2)
  • Blackberries
  •  Fruit tea
  

What have I achieved from this week walking a mile in M’s shoes?  An even greater understanding of the daily battles he faces at such a young age and those he will continue to face as he grows older and has more life experiences.  It wasn’t just about adapting my cooking to accommodate his dietary requirements, though that has been difficult enough at times, but has also been about thinking how we live our daily lives and how we would have to modify those if we were to live as M does.  A  big part has been about educating others, of introducing them to the challenges of living with a complicated diet and of making them stop and think about the things we take for granted – the cups of tea, the cakes or even just a slice of toast in the morning.

I can’t pretend that I’m not glad to be returning to a less restrictive regime tomorrow, but I will be taking some principles of M’s diet back into my regular routine.  I will go back to my salads for lunch, but will accompany them with crispbreads or rice cakes rather than 2 slices of bread -a prime example of how I can and will make some changes.

It’s the little things

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littlethings

That can cause the biggest problems, as we learned to our dismay last May.  Following our previous GOSH appointment, life had been ticking along quite nicely.  We still hadn’t achieved an “accident-free” life for M, but things were improving and he no longer had soiling issues on a daily basis. We hadn’t got a confirmed diagnosis, but we seemed to have reached a reasonable status quo and had hope that things could and would continue to improve.

M was happily taking his medicines daily and we had conquered the protein shake challenge and had possibly the only child in history who liked taking his “special” drink. Just when things seemed to be settled and quiet, we suffered a setback that none of us had been anticipating.

M woke one morning with a sore and slightly puffy left eye, which two days later, looked like someone had bopped him in the face and left him swollen and bruised. Having had my own eye problems over a decade earlier, this is one area that I am particularly sensitive to and without questionning my decision, we all headed to the local eye hospital. M and I went into A&E, whilst Mike and G disappeared off for a walk around the harbour and a second breakfast. We didn’t have to wait too long and the consultant quickly diagnosed Blepharitis, which is an inflammtion of the rim of the eyelid as a result of a bacterial infection. I was shown how to soothe M’s eye and we went away with a prescription for an antibiotic to ensure that the infection didn’t linger. Oh, if only every diagnosis and treatment was as swiftly delivered as that one!

One week later and a follow-up appointment at the Eye Hospital, and M’s eye had returned to normal and the infection appeared to have cleared. BUT, we hadn’t expected the impact of a simple infection and a course of antibiotics on M’s gastric health. It was like going back to our starting position a year earlier as all of the improvements disappeared and M’s health took a nose-dive. This was disappointing for us all and extremely frustrating for M. Having gained limited control over his toileting and his diet, we were back to square one and M couldn’t cope with this change to his circumstances.

What followed was a disheartening and frustration-fuelled few months. We made sure that his diet was as tightly controlled as possible and gave M as many outlets for his angst as possible. During this time, we learned that any infection that M experiences, even something as simple as the common cold, can upset his gastro system and cause a flare up. This leads to a return of the original symptoms and can take time to recover from. The eye infection started M’s flare up and the course of antibiotics added to it. I now know that M is living in a highly sensitive balance between his condition and his general health and this has to be one of the hardest things that we will have to deal with as he goes through life.

This state of affairs continued without improvement until finally, in the middle of August and not long before another holiday to Portugal, a GOSH registrar suggested we tried adding a probiotic supplement to M’s diet to help his body recover. We had a month to try out this change and it was tough. Whilst everyone had warned us about the difficulty we would face getting M to drink a protein shake, no-one though to mention that we would face similar challenges when introducing the humble probiotic supplement.

I think we tried just about everything to get M to take it, and have a vivid memory of sitting in the breakfast room of a London hotel whilst visiting for the 2012 Paralympics, with M on my lap, a glass of apple juice laced with probiotic on the table in front of me and a medicinal syringe to physically get the mixture into M. I have no doubt that we must have been a sight for sore eyes on that glorious September morning as families surrounded us enjoying their breakfast and I strong-armed M into taking his medicine; and I wonder what tales of family life in UK may have gone back with visitors from around the world.

The good news is that the probiotics helped and by the time of our return visit later in September, we had regained some of our lost footing, though we still weren’t moving along as quickly as any of us would have liked.

Life is a roller-coaster

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Having put M’s scopes behind us, we headed into February and our next appointment at GOSH with lighter hearts. We had been reassured that Dr Hill had identified what the problem was during the surgery and that all we needed was the biopsy results to confirm the diagnosis.

Unfortunately, Mike and I were about to hit a “low” on our roller-coaster ride. The much anticipated diagnosis of Crohn’s Disease was not supported by M’s biopsy results and we left that appointment with no end in sight. There was talk of putting him onto the “Elemental diet”, which entails removing all foods for a number of months until the body has time to recover. The prospect of having to consider a nasal-gastric tube to feed M for any length of time was a tough one and one that Mike and I disagreed over. I felt that we needed to do whatever was necessary to get our boy onto the road to recovery, whereas Mike felt this was too extreme an approach and one that he wasn’t yet prepared to commit to. The registrar we saw suggested that M had some blood tests done to rule out some other possible contenders before we headed down this road and another appointment was set for a month later with M in tow once again.

Another month passed and the day before M’s birthday, we headed back to GOSH. This time Mike wasn’t able to take the day off work, so Mum accompanied M and me on our trek to the capital. We weren’t really sure about what we were trying to achieve and where we were heading. M had now been on his free-from diet for 9 months and whilst we had made progress, it wasn’t enough to satisfy us or the medical team. We were also concerned that M’s weight gain was minimal especially as his appetite had dropped off since starting his new diet and it was becoming a tough game to get him to eat.

We left GOSH with a raft of medicines to add to M’s daily diet. He was prescribed Cetirizine and Ketotifen, both anti-histamines that would help his body recover and repair from the allergic reactions he was still suffering from internally. We also needed to introduce a protein shake called Neocate Active to help him gain and maintain his weight. The biggest challenge was going to be to convince M to drink the protein shakes as they are notoriously difficult to introduce successfully to children and even our GP wished us luck as he wrote the prescription.

True to form, however, after an initially bumpy start and numerous attempts at flavouring the shake, M willingly drank his shake daily and even now, 12 months on, has been known to ask for more than one in a 24-hour stretch! The medicines proved to make a difference to how M was feeling and whilst there were no immediately obvious improvements, M seemed to understand that they would help him feel better and took them with very little fuss.

It was during this time that I became a big fan of Dr. Google.  I wasn’t looking for all the answers to all my questions, including those I hadn’t yet thought to ask, but rather needed to find information about the experiences we were going through and to know that we weren’t on our own. It is important to stress that you do have to be sensible in your approach to using on-line search engines to identify a condition. It would have been very easy to diagnose any one of a number of frightening illnesses, so a modicum of common sense had to prevail.

However, in my desire to understand why both antihistamines had been prescribed and what result we were trying to achieve, I stumbled across a list of symptoms that fitted M to a T. The Fabed website sought to educate and support families coping with something called “Eosinophilic disorders”.  I knew nothing about these conditions, having never even really heard about eosinophils and what they were, but the symptoms rang a bell and I determined to read around it until I became a home-grown expert in it.  I discovered not only Fabed, but also another website called Parentsown, which is home to a series of forums for varying conditions.  Whilst the forums are not massively active, I made contact with a couple of other parents who had children with Eosinophilic disorders and became more convinced that this was the diagnosis we were seeking with M, although the condition was going to haunt me for another 9 months before we got it confirmed as a definitive diagnosis.