Tag Archives: FABED

The Pellet Study

Courtesy of sfia.org

Sometimes having a child with a chronic illness is like becoming part of a secret society. You suddenly become well versed in a world of specialised language, medical tests and medicines that you never knew existed in your life pre-diagnosis. Having spent a long time researching EGID both before and after M’s diagnosis, I thought I had come across most things, even if I had no idea what half of them were and whether they’d ever be relevant to M, but the turmoil of the last couple of months and the subsequent plan of action put into place with GOSH was to show me just how wrong I was.

As I agreed with the registrar over the phone about the next steps we needed to take following M’s abdominal x-ray, the words “pellet study” and “slow transit colon” were thrown in my direction. The brief explanation given was probably not enough to satisfy my inner control freak, who needs to know everything and understand the whys and the wherefores, but I figured that I could boost my understanding by a quick further investigation with Dr Google. Sadly, I hadn’t anticipated just how difficult I would find it to get the details and comprehension that I needed from that source.

Courtesy of warriorfitness.org

This time round however, I knew where to turn. Within minutes of getting off the phone to GOSH and my failed attempts to uncover more useful information on the internet, I hopped across from Google to Facebook and posted a question on the FABED forum. I may have mentioned just once or twice before how wonderfully knowledgeable the wonderful FABED parents are and this time was to prove no exception. A couple of hours after my original posting, several Mums had offered their support and advice and one even offered to phone me and talk it through.

Michelle, if you’re reading this, you were an absolute life-saver with that offer and that phone-call. I really can’t thank you enough.

I now had a better understanding of what the pellet study was, what they were looking for and some key pointers to discuss with the doctors before we took the test any further. Most importantly, I had some affirmation that my belief that waiting until October to perform the study, as was originally proposed, was just too long, especially for my desperately unhappy lad and I felt confident that I could go back to GOSH and argue my case.

As it happens, this turned out to be unnecessary as my follow-up call after the Movicol introduction, saw me talking to a new registrar, who agreed that we needed to be testing M now to understand what was going on with him and to make sure we were doing all that we could to help him back to the road of recovery. However, I was able to ask my questions, understand not only what they were looking for, but what they would do with their findings and know where we were headed over the next few months.

The pellet study looks at how quickly food moves through the intestinal tract and whether there are any issues with a slow transit that could have led to M’s chronic constipation. Over 3 days, M needed to take a series of “pellets”, which are capsules containing mildly radioactive and different shaped markers. The pellets are taken at the same time on 3 consecutive days and then on the 4^th day, he had another abdominal x-ray. The images below show how the x-rays could turn out:

Courtesy of http://www.ucl.ac.uk

As you can see, image 1 shows a person with normal transit, who would have passed all or most of the markers out of their body by the time the x-ray is taken. Number 2 shows someone with a slow-transit intestine, which means that the body is failing to move food through the intestinal tract as it should, which can lead to constipation. The final image shows that whilst the transition through the intestines has worked as it should, a blockage at some point has prevented the markers being passed out as they should.

If M’s x-ray turns out to be like image number 1, then we are back to the drawing board to understand what’s going on in his insides, but a normal transition is great news. Number 2 means the introduction of medicine number 8, a stimulant laxative which would effectively irritate the intestines into reacting as they should and push the food eaten along the intestinal tract. Number 3 would be an indication that there is a blockage of some description at a point in the bowel and carries the likelihood for investigative surgery to find out what that blockage is. None of them is an ideal answer, but at least we feel that we’re being proactive in trying to find out exactly what’s going on.

So, the million dollar question has to be – Which x-ray image will M have? Answers on a postcard please…

Proud Mummy moments

Grandma’s Jam

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A couple of weeks ago, as we were talking about him starting his new medicine soon, the impact of this current flare up on M became evident as he sobbed in my arms “What’s the point Mummy? The medicine won’t work because none of them are making me better”.

To hear that your 7 year old is feeling that low and despondent simply breaks your heart. I struggled with knowing how to encourage him to try yet another medicine, knowing that so far our 2 year journey hasn’t waved the magic wand we’d all been hoping for and, whilst things are so much better than they were back then, there’s still an uphill struggle to face.

The biggest battle was finding a way for M to take it. He has to take this one 4 times a day, which means I have to send it into school and can’t send it in its capsule form because he finds that too difficult to swallow, though he continues to persevere to take it the “grown-up” way. The registrar at GOSH suggested we broke the capsule and mixed the powder into a drink or his meal. The taste is vile and tainted everything we tried. He didn’t like it mixed into his food or drink and I was left scratching my head about this one.

As I sat at the kitchen table wondering how to avoid pinning M to the ground and forcibly pouring it into his mouth – don’t laugh, I’ve been there before – I knew where to seek the advice I was after. Thanks once again to the amazing FABED community, I got a great suggestion which would not only make it more palatable for M, but also easy for the school to administer.

Jam.

A spoonful of jam into which you mix the contents of the capsule is an ideal M-sized mouthful and one that he’s willing to take. Grandma’s home-made jam, sent all the way from Canada, is the perfect vessel for his new medicine. He loves Grandma’s peach jam anyway, but his preference for his medicine is strawberry. Fortunately, a care parcel arrived at the beginning of July containing 3 new jars of the strawberry elixir and that will certainly help.

The only question now is, having discovered the secret to successful medicine-giving for M, just how long this little lot will last?!

7 jars and counting

Where there’s hope

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“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.

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.

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.

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.

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

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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.

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.

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.

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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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.

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.

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.

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:

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!

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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:

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.

The final answer?

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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.

National Eosinophil Awareness Week

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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?

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.

7 years to diagnosis

Searching for an answer

Tag Archives: FABED

The Pellet Study

Proud Mummy moments

Grandma’s Jam

Where there’s hope

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

Fabulous FABED!

Exhausted!

The final answer?

National Eosinophil Awareness Week

Life is a roller-coaster