Tag Archives: EGID

Where there’s hope

“Where there’s hope, there’s life.  It fills us with fresh courage and makes us strong again”

– Anne Frank, The Diary of a Young Girl

This has been a quote that has resonated with me over the last week. As I wrote in my last blog, we have been struggling with a relapse that has left us all feeling despair and wondering what our next steps were destined to be.  Dealing with IT changes and financial year-ends at work, as well as M’s challenging behaviour at home, has left me feeling battered, bruised and emotionally fragile.

In the midst of the week, I desperately needed a little hope to remind me that there is more to life than the rubbish I’ve been dealing with recently and it came on Thursday, from what was, to me, a surprising source.

school

M is fast-approaching the end of his final year in Infants and will be moving up to our local Junior school in September.  G has been there since Christmas and has really flourished and we felt that it was the right place for M to continue his education.  We haven’t had the support we had hoped for or that we are entitled to from M’s current school and I have been concerned as to whether things would improve when he made the move.

On Thursday, I arranged a meeting with the Head teacher, SENCo (Special Educational Needs Co-ordinator) and class teacher to discuss all of M’s needs from the EGID to the newly diagnosed dyslexia and dyspraxia.  I spent considerable time reading around what we were entitled to in terms of support for all of these issues, spoke to our local authority about whether we could hope for any help from them and what exact questions I needed to be asking to make sure my boy gets the help he so desperately needs in the classroom setting.

meeting

I went to the meeting with the lowest of expectations as I know how hard the world of SEN can be from following the experiences of others and talking to those in the know, but I was quickly proved wrong.  The staff members were interested in M, asked questions along the way and made suggestions of how best to help him within the classroom.  They made copious notes about what small things we have already found help him and where we need to make improvements to support him more.

The SENCo had already put a phone-call in to his current school to ask for information from them about what procedures, if any, they’ve put in place for him and had read through the report from the Dyslexia Centre which contained the Educational Psychologist’s recommendations for help.  She checked whether we had made the referral to Occupational Therapy, which our GP did during the week, as she was happy to do that for us, but felt it would be quicker coming from the GP than from school.

Even before the OT referral eventually happens, the school are happy to support his dyslexia and dyspraxia by:

  • the use of a writing slope (provided by us!) in the classroom
  • the use of triangular pencils and pencil grips (again from us) in the classroom
  • photocopying or printing worksheets onto yellow paper as this helps M to see writing clearer
  • the use of lined, yellow paper when he’s writing or doing spelling tests, where practical
  • the use of a stress ball to warm his right hand before he starts writing
  • encouraging him to use a yellow overlay when he’s reading as this helps him track the words

Then we got to the biggie, the matter of M’s EGID, multiple food allergies and his current frustrations and emotional issues surrounding it.  I printed out a letter for the school, which I sourced from FABED and which I could personalise to highlight M’s exact condition, allergies, medicines and reactions.  Both his class teacher and the SENCo gave the document a quick scan and then listened intently as I explained the finer details of what this condition entails.

One of my biggest concerns was how they would handle it if M experienced a soiling accident at school.  We have been fortunate that over the last 3 years of his education, this has happened only a handful of times, but given his current relapse and all the anxieties of moving up to a new school, I wanted to pre-warn them that this could be an issue.  They instantly agreed that there would be a need for additional support for M in case this happened and wanted to discuss it further with the Head, particularly as they don’t currently have a shower or suitable facilities to make changing him easy.  At no point did I feel that this was an inconvenience and whilst I don’t expect miracles, or funding, to happen overnight, I am confident that they will find a way to make sure his needs are met.

ticklist

I had discussed the meeting with M the night before as I felt it important that he understood that the school wanted to help him and also to gain an insight into whether there was anything he was particularly worried about regarding the move.  M has had some issues in building friendships and he was worried that the other children in his class would ask him a lot of questions and then be mean to him because of the food allergies.  He is overly sensitive and as emotionally fragile as me at the moment and this was obviously playing on his mind a lot.

I raised M’s concerns and was thrilled to hear his class teacher instantly suggest that they discuss his food allergies as part of the circle time during the first week of term.  They will be talking about all the children and asking them to share something about themselves, so will be a perfect opportunity for M’s allergies to become known in a non-confrontational way.  M can choose to have as much involvement in that discussion as he wants and will help him understand what the other children are told about him.

The staff were concerned and interested enough to reassure me that they would do everything they could to support M in school.  They will be working on a health care plan as well as some short-term targets that will cover all of his health issues and educational needs.  They will ensure that all adults who come into the school, and not just those dealing directly with M, are made aware of his multiple allergies and that his photo, name and list of those allergies will be displayed in the staff-room.  Most importantly, they will maintain a strong communication link between us and them, to make sure that any problems that arise either from their point of view, or from home, are dealt with quickly and not left to develop into something worse.

hope

My difficult week has ended with some hope that, whilst I can’t control M’s health, we will be able to influence his education and that hope really has given me some courage and has renewed my belief that we are strong enough to walk this path.

The psychiatrist’s couch

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!

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.

 DSCF1549

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:

SAM_1186 SAM_1185

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.

Exhausted!

It’s been a long, exhausting, but fantastic weekend.  We’ve got so much more from this weekend than we had expected or even hoped we might.

Saturday was a busy day at the Allergy and Free from Show and I really wish we’d had the 2 day visit we’d originally planned.  Just to give you an idea, the photo below is a small part of the hoard of M-friendly goodies we came back with:

SAM_1171

We managed to pick up some of our family favourites at “show” prices, which meant that lots of the products were at half price or less, but also found some new things too, which were either new to the market by some familiar names or simply new products to us.  Amongst the new treats we discovered were

  • Bfree Gluten and wheat free tortilla wraps – perfect for M and G’s lunchboxes
  • Gluten, wheat and egg free spaghetti – the manufacturer assures me it won’t go sticky during cooking like so many other brands do.  This is one that we’ll have to try and see
  • MozzaRisella – a mozzarella-type cheese made from rice and containing no dairy or soya
  • KoKo Strawberry flavoured coconut milk –  not just a new flavour, but now also available as a pack of 3 250ml cartons, perfect for a treat on a day trip

We found that all the stall holders were knowledgeable, informed and friendly.  Nothing was too much trouble for them and they all took their time to talk with not only Mike and me, but M and G also.  We were also lucky enough to meet the wonderful folks of both Fabed and Parentsown and discovered them to be even more delightful and helpful than they are on their respective web forums.  Finally, the children were collared by well-known TV weather girl, Sian Lloyd who had her very own weather map on hand to show the pollen count and problems experienced by hayfever sufferers in the UK.  She spent a long time teaching both G and M how to present the weather, had photos taken with them and chatted to us about M’s condition and why we were visiting the show.

My round-up of the show has to be M’s quote on whether he enjoyed our visit:

“It’s the best show we’ve ever been to, Mummy.  Can we come again?”

Sunday was another great day, although the sunshine we had been hoping for didn’t materialise and the morning was overcast and grey.  We made our way across London and eventually reached Battersea Park to join around 3,996 other people in the 5K RBC Race for the Kids raising money for Great Ormond Street Hospital.  It may have been a less than sun-filled day, but the number of people taking part was amazing to see and I can’t wait to hear the final figure for the amount of money raised.  We didn’t rush to get to the start early after a late night at Matilda on Saturday – and before I forget, I highly recommend a visit to the Cambridge Theatre to see this awesome show – but we felt the camaraderie and excitement of the walk nevertheless.  As requested by M and G, we had taken along the scooters and they happily led our way as Mike and I followed, alternating between a walk and a gentle jog.

We had some highs and lows along the way with M as expected as he took the occasional tumble from his scooter (we’re still working on the balance issue as he struggles because of the dyspraxia) and minor tantrums as it appeared that G might beat him across the finish line.  However, finish it we did and we collected our medals and goodie bags, completed a quick tour of the entertainment provided for those who took part and even fitted in a play at the fantastic park in Battersea, before heading back across London for lunch and our train back home.

I’m still waiting for a final couple of donations to be made before I can update you on our personal family fundraising total, but, for the interim, here’s a photo of M in his race t-shirt, RBC lion and medal.

SAM_1166

A busy weekend

This weekend has been pencilled into my diary and the family calendar for several months.  It’s looking to be a busy and important weekend for us and allows us to give a little something back to GOSH too.

allergy-free-show

On Saturday, we are heading bright and early to London to attend the Allergy and Free From Show at Olympia.  I had been told about this show last year, but unfortunately the dates clashed with other plans and so I have been keeping my fingers crossed, waiting to hear about confirmed dates for 2013.  As soon as I knew them, the weekend was booked and I applied for a set of free tickets for us all.

I will give you more of an update after the weekend, but I have to say the line-up looks fantastic.  We are all excited about the potential to find and try some M-friendly foods and M is hoping that we might discover a product we haven’t already tried.  I have been told that this show is a must-do for any family dealing with allergies of any description, so if you should find yourself near Olympia at the weekend with nothing else to do and some allergies to accommodate, I would highly recommend you pop along and find out more for yourself.

That counts as a treat for M, well you have to take your treats where you can find them in our family, so Saturday night we have a treat planned with G particularly in mind.  Those of you who know us, will know that both G and M attend a Stagecoach Theatre School and that the whole family loves nothing more than a trip to the theatre, be it for pantomime, musical, ballet or play.  G and M both learned some songs from the hit musical Matilda in the lead up to Christmas and G has been longing to see the musical ever since.  We had attempted to book tickets back in January when we were visiting GOSH, but it was sold out and so we had no choice but postpone this show for another time.  As soon as we knew the weekend for the Allergy show, I knew we had to try and get tickets for Matilda too and this time we were successful.  The children both know we are going and I can’t wait to see their faces as we experience the magic of this well-known Roald Dahl story.

soldout

Finally, on Sunday we are taking part in the RBC Race for the Kids to raise funds for redevelopment work currently going on at GOSH.  We were late entries for this one as we had planned to spend Sunday at the Allergy show again.  However, during our visit to GOSH in May, M spotted a poster advertising the RBC Race at one of the Underground stations and instantly asked if we could take part.  As we are already in London for the weekend and we know that we will benefit from this redevelopment work during future visits and we had both children on-board and happy to complete the 5K challenge, I instantly signed us up.

One of the challenges that could face us on the day, other than working out where to leave our luggage and how to manage 2 scooters plus bags on the train, is the severe joint aches that M can suffer as a result of the EGID.  These can be close to crippling at times and even though I’m happy to be “mean Mummy” and insist that he works through his pain to continue whatever he’s doing, sometimes he’s just in too much discomfort to be happy.  I’m hoping that the excitement about completing the race, scooting the 5K course and raising funds for “his” hospital will be enough to see him round.  Again, you will need to check back next week to see how well we all did on the day.

Finally, we are raising money for GOSH and so I unashamedly plug the cause and ask that if you feel that you can give anything, however small, to support this much deserving hospital, then we would appreciate it.  My heartfelt thanks go to those who have already so generously supported us.  Remember that every little bit makes a huge difference for the children and families who have reason to go to GOSH.

Hyper-sensitive M

lighttunnel

Now many of you might have looked at that title and wondered on the use of “hyper-sensitive” in reference to M.  Over-sensitive may well have seemed reasonable and I’d agree, having seen the wild mood swings and tantrums that sometimes rock my youngest, but hyper-sensitive was a word that I chose deliberately.

You may remember from a blog back in April that I had been awakened by a distressed M in the early hours of the morning.  What I didn’t share back then was that the reason behind his disturbed night was an unexpected allergic reaction to a mint.  Yes, you read that correctly, the humble mint has caused a month of suffering for M and we are only now beginning to see a faint, flickering light at the end of that very dark tunnel.

I have to admit to feeling like a dreadful parent once I realised the cause behind the relapse.  Perhaps the quick scan of the list of ingredients hadn’t been enough?  Perhaps I had missed the warning that said it contained something that M was allergic to?  Perhaps I need to insist that he doesn’t have a treat when with friends, but only ever eats what I’ve provided.  Well, the last point might be valid, but in this case, I’ve discovered that actually there was nothing that I could have done differently and my guilt was unjustified.

The only reason I know that the mint was the culprit is thanks, yet again, to my mighty friend, Dr Google.  The night after that very disturbed one, having seen the consequences of the unexpected relapse throughout the day, I examined in minute detail the food diary we keep for M to see what, if anything, was different about his diet.  As part of the process of discovering exactly what M is allergic to, I keep a daily food record of every item of food that passes his lips as well as noting if he’s been feeling unwell, had a temperature or has had a soiling accident and so I knew that the answer to our puzzle was likely to be found in there.

food diary

The previous afternoon we had met up with a school friend of M and his family for a play and a catch-up away from the playground.  Whilst there, M’s friend B asked if M was allowed to have a Mento mint.  I scanned my eyes over the ingredients quickly and saw nothing to suggest that M couldn’t have one.  I gave my permission and the boys ran off to share the packet between them and their big sisters.  Using Google the following evening, I discovered to my dismay that the glucose syrup contained in Mento mints is derived from wheat, which is not stated anywhere on the packaging itself.

After the exclusion of gluten from his diet back in January, we had seen the disappearance of the last allergic reaction as M finally become fully toilet-trained for the first time in his 7 years.  We celebrated 30 days of being accident-free with a trip to Build-a-Bear workshop and M became much happier and calmer in himself as he no longer needed to worry about whether he was going to get to the toilet on time or not.  Now that had all disappeared.  I couldn’t believe that something so seemingly simple was the cause of a great deal of heartache and frustration for the whole family as M went into relapse and we were back to square 1.

We had an appointment booked at GOSH for the beginning of May and I looked forward to the opportunity to discuss the problem with the team there.  Their initial response was somewhat sceptical, I have to confess, as this product is considered safe by Coeliac UK, who are a respected advisory group to those suffering from wheat and gluten allergies.  However, I knew that these were the only thing that could have caused M’s reaction and was adamant that this was the problem.  Fortunately, my standpoint was further strengthened by the fact that we knew that M reacted to soya lecithin despite being assured that this is usually safe for soya-allergy sufferers.  This we had sadly discovered was not true for M at Easter, when he had a mild reaction each time he ate any of his “everything but soya lecithin free” Easter egg.

The conclusion was simple.  M suffers not only from multiple food allergies, but is considered to be hyper-sensitive to them.  This means that whilst some ridiculously high percentage of wheat- and gluten-allergy sufferers will not react to by-products such as this glucose syrup derived from wheat, and likewise soya-allergy sufferers will not react to soya lecithin, M will do.  He may grow out of these as he gets older, but he might not.  He could develop further allergies, or he could not. There is no simple answer to the problem of having a hyper-sensitive, multiple food allergy suffering child.  I can ensure that as much of the food I buy is as M-friendly as possible and I can attempt to restrict him to only those treats I’ve researched and deemed safe, but there will be times when we might just have to take the chance and I will have to support him and deal with the consequences.

rainbow

The most difficult challenge for us now is taking M anywhere.  The risk we have to consider is whether M will be okay with a food if we don’t know categorically what it contains and are certain it’s safe.  That immediately restricts the restaurants we can take him to on the occasional day out and means that I am going to be paranoid and become “that Mum” who is over-anxious about what their child is being fed in anyone else’s home.  The truth is I don’t mind being labelled as a fussy Mum, I’m sure I’ve been called much worse, if it ensures that we get M back to the road to recovery and keep him there for a few months at very least.

The importance of doing research

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.

The final answer?

finalanswer

Having taken a week’s hiatus from the story of our journey to a diagnosis to blog about our week on M’s diet, I wanted to just go back a few months and finish the story of getting to where we are today.

In September 2012, we had now reached what appeared to be a status quo for M, which though still not ideal, was vastly improved from the position we’d been in less that 18 months earlier. He was taking 5 lots of different medicines during the day to cope with his symptoms – 2 anti-histamines, 1 calcium supplement, 1 probiotic and the protein shake – and was still dairy, egg, wheat and soya free in his diet.

We survived day trips, weekends away and even a two week holiday to Canada to visit Mike’s family and had come through them all relatively unscathed. M was growing taller by the day, though his weight continued to be a concern. We only suffered with a couple of bouts of croup and the household coughs and colds didn’t appear to have any ill-effect on him. There was the occasional, inadvertent slip-up with his food and we all suffered the consequences of those, but we quickly identified what had caused the problem and realised that, for the time being at very least, M would need to continue on his strict diet.

Christmas 2012 came and went as did G’s birthday and both occasions were celebrated with M-friendly food. 2012 had been a tough year for us all for very many reasons and it was good to finally see it leave and be able to look forward to a brighter 2013.

The beginning of January 2013 saw us returning to GOSH for an appointment with M’s consultant. This time round we were able to make it a family trip as the children had yet to return to school and so all 4 of us spent 2 days in the Capital. Mike and I were determined to get some answers this time round. We felt that whilst we had made huge progress with M, we still weren’t in a place that was ideal for any concerned. We didn’t know what we could expect, but we were desperate for a diagnosis and a clear plan in place for the foreseeable future.

The appointment started in usual fashion with a quick overview from our standpoint of how things were going since we had last been there. I had spoken to Dr Hill in the run up to Christmas and she was concerned by the continued frequency of M’s soiling accidents. I was able to report that little had changed since my conversation with her and so she suggested that we took the step of taking gluten out of M’s diet too. At this point, Mike lost it a little and expressed just how frustrated we all were with the lack of knowledge we had about what was wrong with M. We both felt that they were continuing to limit his safe foods without having a good reason for doing so.

She looked at us amazed and asked what exactly he meant. To cut a long story short, it turns out that there had, in fact, been a diagnosis in place since the previous April, but not one of the gastro team we had seen during the past 9 months had thought to advise us of it. I’m sure that many of you would imagine us to be fuming at this apparent incompetence, but, to be perfectly honest, both Mike and I were just extremely grateful that we now had a name to put to M’s condition.

The diagnosis was EGID – Eosinophilic Gastro-Intestinal Disease – a relatively rare and fairly recently identified family of gastric diseases, which fall into the bigger category of Inflammatory Bowel Disease. There is no need for me to bore you with the finer details (you can read a much better explanation here anyway), but it is an auto-immune condition that sees the eosinophils, which are a part of the white blood cells, attacking the body itself instead of the allergen.

For those among you with the better memories, this is indeed the exact condition I had tentatively self-diagnosed during 2012 (see here) and so, for me, this diagnosis was something I already knew a lot about and knew we could manage. I had sourced some fabulous support groups and had already joined them in the belief that this was the road we were destined to be travelling. We now felt empowered and able to take this diagnosis and run with it. The Dietetics team agreed to write a letter to M’s school explaining his condition and the impact it could have on him, which we hoped would enable some support and understanding that had previously been lacking.

We could also now educate both M and G about his condition. You could palpably sense the relief that M had simply by being able to put a name to his condition and he has a reasonable understanding of what’s going on in his body. It doesn’t make it any easier when you trying to explain to the 7 year old why he can’t eat a particular item, but he has grasped the reasons for the reactions his body is experiencing and is learning to accept the current limitations.

We also learned that we were in the best possible place to receive care for a child with EGID. GOSH is a leading light in the research world for understanding more about this family of diseases and is considered to most certainly be on par with the US in terms of their research. This was never going to be something M could outgrow, despite the reassurances of our local hospitals, but we could and would learn to live with it and to make the best of a difficult situation.

Half-way there

That’s right, today sees us reaching the magical half-way point in our week-long attempt to keep to M’s diet.  So far the journey hasn’t been too bad.  Both Mike and I have had to deal with unexpected hunger pangs, but overall, the challenge is working well and really is showing me what M has to deal with on a daily basis.

Today’s challenge has been a different one yet again.  G is baking at school today as part of her Enrichment morning and so I had to provide alternative ingredients to enable her to fully take part.  The choice was to make either Chocolate Chip muffins or Rocky Road.  I made the decision that Rocky Road was the more G-friendly recipe and, what’s more, both children have been begging me to make it with them at home and this ticked that box for G at very least.

As we are following the M-diet this week, I decided to try and replace the relevant ingredients with M-friendly alternatives.  The 2 key ingredients were Rich tea biscuits and butter.  The butter was easy as I just packed up the Dairy and soya free spread that was lurking in our fridge and crossed that off the list.  The Rich Tea biscuits, however, proved to be more problematic.  There are Rich Tea alternatives out there, but they either contain soya or egg, neither of which M can eat.  I found, in the end, 2 possible alternatives: Doves Farm Fig and Quinoa cookies or Against the Grain Ginger crunchies.  Unable to make a decision, I did the rational thing, I bought both and let G decide.

She opted for the ginger biscuits for the Rocky road and the fig and quinoa cookies for a snack after school.  It was a real delight that she brought some home for us all to sample as I had to refuse the delicious-looking Banoffee Pie on offer in the office at lunch-time.  I was very good as I sat around the lunch table with 5 colleagues all enjoying their slices. Tempted?  Yes.  Did I succumb?  No.  The Rocky road was sweet and ginger-y, but delicious and certainly we’ll be making it again.

Wednesday is swimming night, so the children usually eat a lighter meal in the evening.  I had a tough decision as to whether to share the Chicken and sweetcorn soup with them, or make baked potatoes as I normally would.  Guess what?  I let them decide and they both opted for the soup.  The chicken soup was fabulous, the gluten-free toast less so.  It contains pear and so tasted sweet to me, but both children love it and it’s one of the few things I am able to get on prescription for M.  I don’t think I’ll be rushing to share it with him on a regular basis though.

Our meals today looked like this:

M

Me

Mike

Breakfast

  • A handful of raisins
  •  Melon & pineapple chunks
Bowl of

  • Cornflakes
  • Raisins
  • Rice milk

Lunch

  • Crispbreads x2
  • Ham
  • Cucumber (3 slices)
  • Olives (3)
  • Fruit smoothie
  • Bear’s Fruit yoyo
  • “Wot no dairy” Peach & Apricot yoghurt
  • Crispbreads x4
  • Ham
  • Cucumber
  • Carrot
  • Mushrooms
  • Pimiento stuffed olives
  •  Leftover French Onion soup (Home-made & 100% M-friendly)
  • Apple

Dinner

  • 1 ladle Chicken & sweetcorn soup
  • Toast (2 slices)
  • Cucumber (3 slices)
  • Ecomil Vanilla almond milk dessert
  • Rocky Road
  • 1 bowl Chicken, sweetcorn & mushroom soup
  • Toast (3) – Ener-G brown rice flour bread
  •  1 bowl Chicken, sweetcorn & mushroom soup
  • Crispbreads (2)

Snacks

  • Nkd Cocoa Orange Date bar
  • Lo-profin vanilla wafers (2)
  • Fruit Factory fruit string
  • Fig & Quinoa cookie (1)
  •  Fruit tea
  • Rocky road
  •  Banana
  • Rocky road

National Eosinophil Awareness Week

Week

Forgive me for interrupting our “story so far” and I promise that normal service will resume soon, but I wanted and needed to raise awareness of the importance of next week.  As the image above shows, May 19th – May 25th is a week dedicated to raising the awareness of everyone to Eosinophilic Disorders.  Until we were dragged kicking and screaming on this tumultuous journey with M, neither Mike, I or indeed our families had ever even heard of Eosinophils, let alone had any idea what they did and the massive impact they could have on life as we knew it.

We are amongst the lucky ones as M is able to eat “proper” food, even with all his dietary restrictions and is happy to take his medicines on a daily basis to help manage the symptoms.  There are very many children out there who have even more restrictive diets or cannot eat at all and instead are fed through nasogastric tubes.  That could so easily have been the position for us and could still be if we can’t stabilise M to everyone’s satisfaction, and so I’m thankful for every day that it isn’t.

Over next week and the weekend of June 8/9th, we will be committing to raising awareness and educating friends and family about M’s condition.

Next Friday, May 24th, is “Eat like us” day, when families of children with EGID will be committing to eating like their child for the day.  Mike and I are, however, committing to something slightly more.  We will be adopting M’s diet for the full week, adapting our recipes and meals to accommodate the “egg, dairy, wheat, gluten and soya” free diet he has to eat everyday.  On the Friday itself, we will be eating exactly what he eats for the day, though I’m not sure either of us will be braving the Protein shake!

On Sunday June 9th, we have signed up to walk the RBC Race for Children in Battersea Park, London.  This 5k walk/run/ride/scoot is to raise money for GOSH, who are currently redeveloping the hospital to create more much-needed space for the children, family and staff who are there on a daily basis.  M is keen to fundraise for “his” hospital and as we are already in London that weekend and have a lot to say thank you to GOSH for, it was a really easy decision to make.

This is not M’s first foray into fundraising for GOSH.  Following his and our stay at the Patient hotel last January whilst he had his scopes, M asked how much money it cost to support a family to stay there with their child for the week.  Through some research on the GOSH charity website, we learned that £50 would pay for the upkeep of one room for a family for 5 nights.  With the help of the Stagecoach theatre school that G and M have been attending for 5 and 3 years respectively, the end of term collection in March 2012 raised a fantastic £135, which will pay for nearly 2 full weeks for a family in one of their rooms.

I will be updating my blog on a daily basis from May 19th to detail our menu choices and how we manage the week on the diet M has been following for the last 2 years.  It will undoubtedly be a tough week for us and I have to ask – would you be brave enough to walk even 1 day in the shoes of these courageous children?