Tag Archives: Eosinophilic

M’s Daily Bread

When our journey to reaching a diagnosis for M started at GOSH 3 years ago, we never could have imagined how radically his life, or ours, would be changed.  It was incredibly difficult to remove so many things from his diet and I will never know how our amazing 5 year-old accepted this new way of life with so little resistance.  Over the past 3 years I’ve spent a lot of time developing recipes to allow both G and M to enjoy the same sort of treats as their friends, be it traybakes, cakes or biscuits, all with varying success; but the one thing I’m yet to perfect is bread.

G is able to eat the wonderful Genius bread, which we discovered back in 2009 when she had the most difficult diet in the family, being wheat-, dairy- and oats-free.  That discovery made a big difference to her life at the time and we were once again able to easily enjoy picnics and packed lunches without G feeling like the odd one out.  Unfortunately, M has not been so lucky.  Genius bread contains egg, which is still a no-go for M despite 3 attempts to re-introduce it into his diet, and also potato starch.  Instead, he is left with the dubious pleasure of Ener-G brown rice bread, which really is only just about edible when toasted and, I suspect, only then because there isn’t a good alternative.

I have attempted a couple of bread recipes, but have never really ended up with a loaf that M has enjoyed enough for me to make again.  As I unexpectedly have him at home from school due to his tummy bug and the resultant flare, I thought we’d spend some time in the kitchen and attempt this most recent bread recipe which I discovered on the Doves Farm website.  I had all the ingredients in the cupboard, so we found everything we needed, washed our hands and started baking.  M enjoyed weighing and measuring the ingredients out and it was a great opportunity for him to practice his reading skills without really realising it.  Everything looked good when it went into the baking tin, though M was not impressed by the 90 minutes proving it needed or the fact that it would then take a further hour to bake.

The best rice flour bread!

The best rice flour bread!

The end result was simply spectacular.  The loaf had an amazing crust, the dough was cooked through and the grainy nature I’ve come to fear in anything baked with rice flour was not overly apparent.  The smell of fresh bread baking has been missing from our house for a while and it’s fab to know it will be making a reappearance on a regular basis.  G and M had a warm piece of bread each, straight from the oven and covered with a generous lashing of their free-from spread.  Their verdict?  Delicious!

 

Today saw a small return to M’s depleted appetite, so hopefully he’s on the mend and will back to his bubbly self soon enough:

M

Me

Mike

Breakfast
  • Smoothie (1/2 banana, 5 strawberries, 200mls rice milk)
  •  Orange
Bowl of:

  • Free-from cornflakes
  • Rice milk
Lunch
  • Sakata rice crackers (4)
  • Free-from spread
  • Fruit string

 

  • Sakata rice crackers (6)
  • Cucumber
  • Celery
  • Peanut butter
  • Sliced pear

 

  •  Left-over chicken casserole and rice
Dinner
  • 4x sweet potato wedges
  • Pork belly slice (1/2)
  • Cucumber
  • Apple (1/3)

 

  •  Sweet potato wedges
  • Pork belly slices (2)
  • Courgettes
  • Mushrooms
  •   Sweet potato wedges
  • Pork belly slices (2)
  • Courgettes
  • Mushrooms
Snacks
  • Fruit buttons (blackcurrant)
  • Capri sun orange drink
  • Brazil & Sultana bar (1/2)
  • Rice bread (1 slice)
 

Quiet day

After the excitement of an early start to our awareness week at the end of last week and the unexpected challenge of a sickness bug for poor M on Friday night, we had something of a quieter day today.  Mike and I both have some dietary challenges to face in the week ahead and Mike’s started today with a business trip, which needed some very careful and canny purchasing of lunch whilst he was out on the road.  He was reasonably successful, though he found the choices extremely limited, especially given the further restrictions to M’s diet over the last year and the prices higher for the few items he could choose to eat.

One of the things we’ve been encouraging M to do since his diagnosis, is to develop the confidence and skill to explain a little about his condition and share information about his food allergies with new acquaintances.  During this past week, I have been proud to discover that he has been doing this and doing a pretty good job of it, all things considered.  He has been able to give an explanation that has partly explained his food allergies and, in both cases, the Mums he’s been chatting to have been comfortable enough to approach me and ask more questions about EGID.  There is an alarming lack of knowledge and information concerning EGID, but this wonderful information flyer, produced by FABED, gives an easy-to-understand explanation of what is a complex condition:

NEAW_Flyer-page-0

 

And, just to finish today’s blog post, here’s our meals for the day.  As you can see, M is struggling with a poor appetite because of the bug, so getting anything into him is a win right now, however small it is:

 

M

Me

Mike

Breakfast
  • Banana (1/4)
  •  Sliced pear
Bowl of:

  • Free-from cornflakes
  • Rice milk
Lunch
  • Nakd Berry Delight date bar

 

 

  • “Chicken on a stick”
  • Eat Natural Brazil & Sultana bar (2)
  • Apple
  • Banana
Dinner
  • Orgran Mini Outback chocolate animals
  • Smoothie (1/2 banana, 4 strawberries, 100mls rice milk)

 

  • Rice
  • Home-made chicken casserole (onion, garlic, chicken, mushrooms, courgette, carrot, corn, tomato, coconut cream, chicken stock)
  • Rice
  • Home-made chicken casserole (onion, garlic, chicken, mushrooms, courgette, carrot, corn, tomato, coconut cream, chicken stock) 

 

Snacks
  • Fruit buttons (apple)
 
  •  Blueberry smoothie

An early start to Awareness week

local_radio_graphicNational Eosinophilic Awareness Week started today, but my bid to raise awareness of this rare condition in fact started on Friday afternoon.  Last year, Mike and I looked to raise awareness amongst our work colleagues, so my plans for this year obviously had to be bigger and better and I started by e-mailing the local press to see if anyone would be interested in running our story.  To my delight, late last Wednesday I was invited to appear on our local BBC radio station to talk about M, EGID and coping with the daily battles we have to face, including cooking for a child with multiple food allergies.  I accepted the offer and Friday afternoon saw me heading into the BBC building with a batch of freshly baked M-friendly cupcakes to share with the presenter and other guests.

 

10348778_10152049176741123_2166202480088495019_oThe cakes were well received, even by the security guards, who were keen to find out more about why I was bringing the cakes into the studio and enjoyed the M-friendly treats I left with them after the show. It was an amazing experience and I can’t thank our local radio enough for giving me the opportunity to get the message about EGID out into our community.  I was able to share, both on and off air, a little about the challenges those of us living with EGID have to deal with and the prognosis for M and children like him.

But, our Awareness week activities don’t stop there.  This time last year, I wrote about our decision to “eat like M” during the week:  one year on and we’re repeating the experience, although we have the added challenge of dropping raisins, raspberries and potatoes out of the diet too.  Actually, this isn’t as tough for me as it is for Mike – I’m not a big fan of raisins and can’t eat potatoes at all due to my own intolerance to them.  We have some more awareness-raising events planned for the week ahead, but for now, I’ll leave you with our meals for the day:

M

Me

Mike

Breakfast
  •  Sliced pear
Bowl of:

  • Free-from cornflakes
  • Free=from rice pops
  • Rice milk
Lunch
  • Roast chicken
  • Sweet potato wedges
  • Corn
  • Peas
  • Carrots
  • Roast parsnips
  • Really not dairy mayonnaise



  • Roast chicken
  • Sweet potato wedges
  • Corn
  • Peas
  • Carrots
  • Roast parsnips
  • Really not dairy garlic mayonnaise
Dinner
  • Rice bread toast (2)
  • Peanut butter
  • Orgran tinned spaghetti
  • Apple (1/2)
  • Cucumber

 

  • Corn tortilla chips
  • Home-made tomato salsa (Tinned tomatoes, onion, garlic, chilli flakes, chilli powder, olives, corn)
  • Home-made cucumber raita (coconut cream, chopped cucumber, chilli flakes)


  • Corn tortilla chips
  • Home-made tomato salsa (Tinned tomatoes, onion, garlic, chilli flakes, chilli powder, olives, corn)
  • Home-made cucumber raita (coconut cream, chopped cucumber, chilli flakes)

 

Snacks

 

 
  •  Dried apricots

Eosinophilic Awareness Week 18th-24th May 2014

This week I’m delighted to welcome Kate from The Recipe Resource as my guest blogger. Her blog was set up to support those catering for multiple food allergies, particularly in children and Kate is a fellow EGID Mum, who I’ve been privileged to meet through the fantastic FABED.  I was going to write a post to tell you all about Eosinophilic Awareness Week, but found Kate had already done an amazing job on her own blog and she kindly agreed to let me share it with you all:

 

18th-24th May 2014 is Eosinophilic Awareness Week.  Read about EGID here

Gastro research is drastically UNDER FUNDED.  It is not “glamorous” and rarely on the radar for celebrities and focus groups, and rarely attracts public interest unlike cardiac care and cancer research.  Gastro conditions are badly neglected in the UK when it comes to research funding allocation, but without research treatment and outcomes are not likely to improve much.

Approximately 1% of the total amount of medical research funding available in the UK can be accessed for Gastro research.  There are currently no listed projects specifically for Eosinophilic Disorders on the National Research database.  GOSH are running a Gastro Research Project that will include related conditions/problems.  Alarmingly, children with allergic gut conditions are reaching epidemic proportions according to GOSH.

No one knows why the UK has the highest incidence for Allergy.  I went to Westmnister to attend the All Party Group for Allergy in October 2013 and heard how in the 19th Century, a study into Hay Fever took two decades as it was so rare and there were insufficient people to include in the study.  Today it is incredibly common.  The UK tops the league table in the incidence of allergy in its population, with Australia second – which is interesting as their population obviously share a similar root.  Allergic gut conditions are becoming common and hugely problematic for NHS paediatric services and Eosinophilic Disease is a specific subset of this group.

FABED is the main UK charity supporting families with members (adult and children) who suffer from eosinophilic disease.

FABED

FABED are UK partners supporting the United States Eosinophilic Awareness Week.  This is coordinated by APFED.  Two years ago they made this video to promote awareness.

Read more about Eosinophilic Diseases here.

During Eosinophilic Awareness Week, do something to raise awareness.  Tell someone about EGID and the appalling lack of funding for gastrointestinal disorders in the UK.

 

This blog was first posted on May 9th 2014 at The Recipe Resource here

Allergy UK Annual Conference

20140428_150922To say that mornings and I do not get along is something of an understatement, and early mornings are the worst.  I am, without a shadow of a doubt, a genuine, bona fide, card-carrying night owl and so anyone who saw me out and about at 6.30am last Saturday, was probably left checking their watches and convinced that something extraordinary was going on. The occasion was Allergy UK‘s first annual conference, being held at St Thomas’ Hospital in London.  I first heard about the event at the start of this year and had been excited about the prospect of finding out more about allergies from the experts attending and presenting at the conference.  The day had been designed to address the needs of individuals and families dealing with allergies on a daily basis and consisted of speeches and workshops as well as open Q&A sessions held during the afternoon.

Professor Peter Howarth of Southampton General Hospital was the keynote speaker for the day.  He opened the conference with a fascinating insight into the on-going and future research that is currently being carried out in the area of allergies and allergic responses. He talked about the recently well-discussed research into peanut allergies, which is looking at whether it is possible to “switch off” the allergic response through regular exposure to peanuts in known sufferers, and whether this approach could be applied to other allergies too.

I was also fascinated to learn from Professor Howarth about the link that appears to exist between Vitamin D and the allergic response.  Studies carried out suggest that Vitamin D can help to reduce the allergic response, particularly in individuals suffering from asthma or urticaria and it is evident that much more research into this area could be extremely beneficial, although there is no funding available for this at the moment.  This is definitely an area I will be keeping an eye on to see if it could be of benefit to M in the future.

Mike and I then attended 2 afternoon sessions, the first of which was a child allergy workshop and proved invaluable, not least because Dr Jo Walsh, who ran the session, explained clearly and concisely the difference between intolerances, IgE allergies and non-IgE allergies.  Her excellent explanation simplified what is a complex and much-misunderstood area and would be an amazingly useful tool when trying to explain M’s food allergies to anyone who comes into contact with him.  She also touched briefly on how to manage the risks to an allergic child out of the home and brought to our attention the NICE guidelines drawn up in 2011, that cover the diagnosis of food allergies and intolerances in children.

The second workshop was run by Dr Helen Brough and was aimed at looking at dealing with allergies with teenagers.  Although this workshop promised a lot, I felt that it didn’t really deliver on our expectations.  The time allowed was just too limited to even begin to touch on what is a complex situation and certainly didn’t really offer any practical tips on how to deal with your teenager and their approach to life with their allergies.  She focussed a lot on the Adolescent allergy clinics they are beginning to introduce, but the time was spent discussing what the parents and teens in the room would like from such clinics, rather than on what is actually provided.

All in all, we were impressed with the day and would be keen to attend another one should Allergy UK decide to hold it again.  There was lots of information available on the day, but I would recommend that the workshop sessions be extended in length as 45 minutes was just not long enough to spend in discussion on such an involving subject.  I will be keeping my ear to the ground to see if Allergy UK run another conference next year and will let you know the minute I hear anything about it.

 

Another birthday celebration

Guess what?

Today marks the first birthday of this blog.

First birthday

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

A few statistics to share about the last year:

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

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

Our birthday boy

Over the past few days, we’ve been celebrating young Master M’s 8th birthday.  It’s hard to believe that it’s been that long since he first crashed into our world and whilst the time hasn’t been easy, it certainly has flown past fast.  The last 8 years have been filled with a lot of laughs and smiles and it’s exciting to see just how our “little bean” is growing up.  Obviously, we’ve had a lot of health worries along the way – this blog wouldn’t exist without them – but those haven’t overshadowed the joy and good times of having M as part of our family.

  SANYO DIGITAL CAMERA

M has become a little boy with a big personality.  Like most other boys of his age, he loves everything Lego, Star Wars and Angry Birds and is a keen member of our local under-8s football team, where he can be found most Saturdays running around the pitch and even occasionally kicking the football.  He loves discovering new things and although he’s not the most academic of children, his passion for new facts, knowledge of the world and probing questions have been flummoxing his teachers for years.  M does struggle due to his dyslexia and dyspraxia, but the strides he has made since we got the diagnosis last year are amazing and he never lets them stop him being an active participant in class. He enjoys school now more than I ever thought possible and is keen to get there each morning to spend the day with his friends.

DSC02717He adores his big sister and even though he spends most of his spare time planning new ways to wind her up, he will be the first to leap to her defense or comfort her when she’s upset.  He will go off to search for a scrap of her “rag” when she’s in tears, though he will also hide it from her when he’s in one of “those” moods.  They love nothing more than playing together in the garden and enjoyed most of the weekend’s sun by washing my car with M’s brand new super-soaker.

P1010012Perhaps more unusual is his flair for all things theatrical.  M has never been backwards in coming forwards and I have photos of him stepping up to perform karaoke age 4.  He loves to perform and is always looking for the next opportunity to do so.  His current favourite musical is “Singing in the Rain”, though he’d probably also mention “Lion King”, “Matilda” and “Oliver!” in no particular order.  M has a dedicated dressing-up wardrobe and has fancy dress to meet every occasion.  No matter what character you’re looking for: be it “Odlaw” from Where’s Wally, “Bert” the chimney sweep from “Mary Poppins” or the “Ringmaster” from “Ninja Meerkats”; I can guarantee that M will have already been there and worn that!

When it comes to coping with his EGID and his diet, M is a trooper.  He takes his medicines with the minimum of fuss and accepts the food restraints with relative good humour.  He’s not perfect by any stretch of the imagination, far from it, and really struggles at times with frustration and anger that this is his lot in life.  Yet he nearly always bounces back and keeps going with a positive attitude.  The latest challenge of no potatoes has been one of the hardest M has had to face and he has really found it difficult to accept that he might have to avoid them longer term; but even he has had to agree that things have improved since we whipped them out of mealtimes and is now hoping that our next GOSH appointment will bring a food trial instead.

20140307_232425

To celebrate in true style, I once again attempted to bake the double and created 2 cakes for M to enjoy – one for our family dinner and one for him to share with his friends at his party. The first he chose from my cupcake decorating book and the second was inspired by G and M’s current passion for all things “Despicable Me”.  It took two long and extremely late nights, but I achieved my goal, was pleased with the results and, more importantly, so was the birthday boy himself.

20140309_002834

“Nothing can hold us back”

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

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

M

Ms first tube

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

October 2013 and another tube

October 2013 and another tube

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

You can read more first-hand experiences here:

Mr Sandman

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

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

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

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

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

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

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

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

sandman

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

New year, New plan

The first week of 2014 and our first visit of the new year to London and GOSH for a consultation with M’s gastro team.  Mike and I had our list of queries drawn up and were determined not to leave without some answers.  Topping the list were our concerns as to why M has been struggling so much with chronic constipation since the beginning of last summer.  It seems that no sooner have we managed to get his system cleared out, than the problems start all over again and nobody seems able to explain why this is happening in such a relentless manner.  My meeting with the wonderful local Bowel and Bladder clinic had given us a proposed plan to follow and I was keen to see if GOSH would jump on board.

Courtesy of telegraph.co.uk

Courtesy of telegraph.co.uk

Another on-going worry has been the restricted diet and number of medicines that M is taking and is one that his consultant has shared, especially as he is still symptomatic, which is the worst of all worlds.  We work hard with M to keep him going and stick to the daily grind, but he shows more and more reluctance to do so and sometimes the battle is just a step too far for us all.  I was keen to know if there was any possibility that we could remove one or two of his 7 daily medicines as we had discussed at our last proper appointment back in May.

Despite his weight loss in October whilst admitted to GOSH, and a further loss during December, M has managed to gain some weight in the last 12 months and is still creeping along his centile line, which keeps the medics happy.  This visit’s registrar was pleased to see that he had gained in both height and weight, though he mentioned that he would be happier if M could gain a little more weight in the coming months; a difficult feat when your child eats little other than “thin air” as M himself describes it.  We discussed at length the experiences and the numerous phone-calls that I’ve made over the last 8 months.  He even agreed that the current situation is less than ideal and supported, in principle, our tentative query as to whether we could drop a medicine or 2.

Courtesy of newharmonywellness.com

Courtesy of newharmonywellness.com

BUT – and admit it, you could sense that was coming, couldn’t you? – we can’t lose a medicine just yet.  Due to M’s new symptoms, the constant bowel problems swinging between chronic constipation and incessant diarrhoea and the general ill-health he’s been dealing with since the summer, we instead have to introduce new medicines to see if we can get a handle on the situation.  We’ve now got 2 more to add to the daily regime:  Senokot, which is a stimulant laxative, to help resolve the constipation issue, and Lansoprazole, a PPI to deal with the reflux that we’ve only recently learned M has been living with.

The problem with new medicines is that we can’t stop any of the old ones until we see if there is any improvement in his condition.  If we see a change for the better, we need to be certain that it is the new medication that is helping, an issue that would quickly become muddied if we took out any old medicines alongside starting new ones.  So, for the next 3 months until our return visit to GOSH, M will be on 9 medicines daily and already he has proved himself to be a real little trooper in his approach to it all.  I don’t know that I would be so keen to take so much every day, especially when there are no obvious outward signs that anything is making everything better, but he remains positive and determined to beat this condition and not let it rule his life.

We do have one other thing to do over the next 8 weeks and this resulted from the follow-up conversation with M’s dietitian.  She felt that we needed to exclude a couple more foods from M’s diet to try and reduce his symptoms.  We agreed to tackle the 2 that he has complained about when suffering from reflux.  His description of them making his throat feel as if “…someone has a pin and is pricking my throat and running it down the length of it..” as he swallowed had sounded the alarm with me and the dietitian agreed.  potatoesSo, for the next 8 weeks we are now experimenting with life without potatoes and raisins as well as the already excluded gluten, wheat, dairy, soya, egg and raspberries.  Fortunately, M almost always prefers to eat sweet potatoes to the humble spud and so I’m hopeful that, for the most-part, this won’t prove to be too difficult a challenge for us.

The visit to GOSH wasn’t quite as we’d hoped.  We’d gone with the dreams of reducing his medicines down to 5 or 6 and came back with the reality of 9 daily medicines and an even more restricted diet.  It’s hard to remain positive in the light of such a change, but we continue to strive towards a symptom-free M and will do whatever it takes to get him to that position.