Tag Archives: food allergies

Another day..

…and another challenge.

Today has been a different kind of challenge for us. We have long been aware that as well as his dietary difficulties, M has also struggled in the classroom. He’s a bright lad, articulate and with an imagination that many would envy, but he has struggled to learn to read and write. He loves to be creative, to perform and can sometimes answer mental arithmetic faster than G, but he struggles to spell and put his creativity down on paper as the written word.

Having finally found the diagnosis for his health issues, Mike and I decided we needed to seek an answer to the academic ones. M completed 12 weeks of fairly intensive speech therapy at Easter which enabled him to say his “s” sounds clearly and we have seen his confidence grow. Now it’s time to see if we can give him a pair of metaphorical wings and watch him soar.

So, this morning, instead of heading off to school and work with our packed lunches in tow, M and I made our trek to the Dyslexia Centre for an assessment. M met with a lovely Educational Psychologist for just over 2 hours, where she put him through his paces. The answer came back with a resounding “yes”; they could identify the problem and there is something we can do to help. M has dyspraxia and possibly also visual dyslexia. This is going to be a steep learning curve for us, but in a nutshell, he is going to struggle with processing the messages his brain sends as they are not properly or fully transmitted.

We came away with 2 coloured acetates, one yellow and the other “celery” (I kid you not), which will help him track lines when reading text or numbers – this is the visual dyslexia part. We now need to research the options for an occupational therapist to help with the dyspraxia, an optician who specialises in the diagnosis of visual dyslexia and the processes we can put in place and can ask school to do to help him. Whilst this seems, and feels, like yet another set of labels for M, I am relieved to have an answer to his academic struggles and a resource to be able to find some fixes for it.

On the dietary front, both Mike and I have managed okay and, as I type this blog, Mike is putting the final touches to tonight’s dinner. My biggest struggle today has been hunger pangs, I have found that I don’t feel as full on M’s diet as I usually do, but I don’t think that’s necessarily a bad thing. Mike’s is the continued avoidance of the cakes and cookies at work, which is definitely not a bad thing. The hardest thing for tonight’s dinner? No mayonnaise, which I love to eat with Corn fritters and sausages normally.

	M	Me	Mike
Breakfast	A handful of raisins	Sliced apple	Bowl of: Cornflakes Raisins Rice milk
Lunch	Crispbreads x2 Ham Cucumber (3 slices) Fruit smoothie Crisps (Plain) Bear’s Fruit yo-yo	Crispbreads x4 Ham Salt & Vinegar Mini rice-cakes	Leftover cooked rice and Chicken Korma Apple
Dinner	2 Tesco Free-from sausages 3/4 Corn fritter (home-made using my pancake recipe) Carrot (1 stick) Cucumber (3 slices)	2 Tesco Free-from sausages Tomato Mushrooms Asparagus Corn Fritters with added chilli flakes	2 Tesco Free-from sausages Tomato Mushrooms Asparagus Corn Fritters with added chilli flakes
Snacks	Nkd Cocoa Mint date bar Fruit Factory Fruit stars Doves Farm Fig and Quinoa cookies (2) Banana	Peppermint tea	Banana Apple

What, no tea?!

Day One – Sunday May 19th

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Today was the first day of our week on a M-friendly diet. Mike and I were both quite looking forward to the challenge of eating as our youngest does, not least to see what health benefits we gain as the week progresses. I don’t think it will come as any great surprise to anyone that Mike and I would both like to loose a little weight and this seems like the perfect opportunity to kick-start that whilst supporting M in his daily struggle too.

I’ve spent some time explaining to M what Mike and I were doing this week and think it only fair that I do the same for you. From today to Thursday, we will be eating food that M could eat if he wanted to, but will not be eating necessarily exactly the same meals. For example, Mike and I will be adding vegetables such as mushrooms, courgettes and tomatoes to our meals, knowing full well that M won’t eat them, but that they currently are part of his “safe” foods. Friday will be different. We will eat exactly the same things that M eats, nothing more, nothing less and, at M’s request, we have both agreed to drink his protein shake (Neocate Active) on that day too.

Breakfast was, perhaps, the easiest meal to cope with as, for the most part, it wasn’t going to see any major changes to our usual fare. Mike usually starts his day with a bowl of cereal, raisins and either coconut or rice milk and as M can eat all of that too, he didn’t need to change that meal at all. My breakfasts will need a little more adapting as I typically eat fresh fruit and yoghurt or some toast, neither of which fits into the wheat, gluten, dairy, soya and egg free regime.

Lunch was a little more challenging and saw our first pitfall of the week. We headed to Tesco to pick up a couple of their Free-from frozen pizza bases as well as a couple of other free-from ingredients to see us through the week. I was disappointed to discover that our local Tesco appears to have stopped stocking these pizza bases, which are the only ones I’ve found that M can eat as they are egg-free too. I had to make a quick decision and decided to pick up a pack of their fresh bases instead as they contain a little egg, but are safe for G to eat.

Getting home, I made my 1 remaining M-friendly pizza base into a pizza for Mike and him to share and used the smaller, individual bases to make a pizza each for G and me. The ingredients were as follows:

Heinz tomato ketchup and Barbecue sauce on the base (though mine had a home-made salsa of chopped tomatoes, onion, garlic, chilli flakes, balsamic vinegar and sugar)
Marks and Spencer’s salami slices and gluten-free breaded ham
Pimiento stuffed olives
Corn
Tinned pineapple (though I forego this as I’m not a fan of fruit and savoury together)

G had the same, except without the pineapple or olives and with some goats’ cheese grated on the top.

The pizzas were delicious, but I was soon to suffer the consequences of a very silly mistake. In my rush to check the ingredients to make sure that we weren’t inadvertently adding anything that M couldn’t eat, I forgot to check for my arch nemesis: potato. Within minutes of finishing my pizza, I started experiencing stomach cramps and quickly realised my mistake. Thank goodness that the mistake was mine and didn’t cause problems for my boy!

An afternoon bike ride and play in the park for Mike and the children followed, whilst I got started on tonight’s dinner. I decided to ease us in gently and opted for something I knew we could all eat and would enjoy – a Roast Chicken dinner. This consisted of:

Roast chicken (with enough left-overs for Mike’s lunch tomorrow, dinner tomorrow night for us all and even some chicken soup for later in the week)
Sweet potato mash made with Dairy and soya free spread for M and me
Mashed potato for G and Mike
Peas and corn
Carrots
Courgettes topped with mustard (just for Mike and me, though M did give this one a go)
Gravy made from Knorr chicken stock cubes (wheat and yeast free), onion and a little balsamic vinegar

I even managed pudding tonight and adapted a recipe for Treacle sponge pudding made with rice milk, rice flour, xantham gum, dairy/soya free spread and egg replacement powder and all cooked in the microwave in 5 minutes. Some custard made from Birds’ custard powder, sugar and rice milk topped it off perfectly.

Today was an easy day for us food wise. I chose to cook things that I knew were easy to ensure as being M-friendly as well as things that the whole family enjoy to eat. The rest of the week will most definitely be more challenging, but it’s a challenge that I feel I’m up to, after all I’ve been cooking this way for the last 2 years.

An unexpected hiccup

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Today has just been one of those days. Mike and I have been psyching ourselves up for the start of our week on the M-friendly diet which starts tomorrow morning. The sun came out to make today a beautiful day and we had every intention on going out on a family bike ride, possibly with a picnic in tow.

However, despite the best laid plans, today has not gone as we were expecting.

Our hiccup started at around 8.30am this morning, when G and M descended on me and woke me up to tell me that M had some spots on his back and he was very, very itchy. A quick glance showed some unpleasant red welts on his lower back, which he couldn’t stop scratching. When I examined a little further, the welts were in fact across his left shoulder, in two patches on his middle back, down one side and in a patch at the top of his buttocks too.

M has been a little out of sorts for a couple of days and yesterday evening described his feelings of a “tummy-ache” and “feeling very hot inside my tummy”, even though he had no obvious temperature. Today he was more than a little out-of-sorts, but considerably more grumpy than usual. He has over-reacted to everything that happens, but then flaked out with no energy to keep his frustrations going.

I consulted my Mum, her medical books and Dr Google. We were a little concerned about measles given the current epidemic in Wales in particular, but didn’t feel his rash looked enough like measles spots to warrant us being unduly concerned. I tried our local GP, but the health centre was closed because it’s a Saturday, and we all know that you can’t get ill on a weekend! The recommendation on the recorded phone message was to call the NHS’s new number “111”.

As Mike organised a cooling bath for M and supervised both children getting dressed, I phoned the NHS helpline and talked through M’s symptoms with the phone operator. Her reply was that we needed to keep M cool and hydrated and she would arrange for a consulting operator to call me back within 2 hours as she felt that his condition warranted it. I gave my mobile phone number as the contact number and decided with Mike that we would leave G with my Mum and take M into the A&E department of the local Children’s Hospital.

Off we went on our unplanned Saturday morning visit to the local A&E and I have to say now how impressed I was with the NHS 111 operators. During our 25 minute journey, not only had the consulting operator called me back and discussed M’s symptoms, but she also arranged for the local out-of-hours GP to phone. His recommendation was that we came in and got the spots checked out, particularly because of M’s underlying condition and booked us into the Out of Hours GP surgery at the local hospital.

We got there and were seen unbelievably quickly. The doctor we saw gave M a thorough examination and then gave us her verdict. She believed that M had had an allergic reaction to either another food or possibly to an environmental allergen, which caused his body to “break-out” in the red and itchy welts, rather than the usual response of stomach cramps and diarrhoea. Fortunately, we keep a detailed food diary as a matter of course and so are able to track everything M has eaten and also every complaint, reaction or temperature he experiences.

At the moment, we have no idea what caused this reaction and have to just persevere with helping him recover from it without the assistance of any additional medicine – as he already takes 2 anti-histamines, the only logical next step medication-wise would have been a steroid-based treatment and we didn’t feel his symptoms needed such an extreme response. All we can now do is keep monitoring the situation and look out for further break-outs on his body. I hate to think that there could be yet another food that needs to be removed from M’s limited diet, but that may be unavoidable.

By the time we got back, recovered G, ate lunch and got home, most of the afternoon had disappeared on us too and we had time enough to play some board games and watch a little TV before bedtime. It’s not been the day any of us planned, but I guess that that’s just life with an allergy child.

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?

When life gives you lemons…

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…make lemonade. Isn’t that how the saying goes? I have to confess to pondering this one in the early hours of this morning after being woken up by a somewhat distraught M who had just had a soiling accident whilst asleep. He woke me at 3.45am and 2 hours later, my mind was still buzzing and sleep seemed a thing from the dim and distant past. This doesn’t happen very often, but the impact is huge and it got me to thinking.

The impact of M’s condition has been massive on us all as a family and not just on M himself. To anyone who has a “sick” child, you will understand what I mean.

Mike and I have suddenly had to become medical experts in our own rights, despite our alternate careers as an accountant and surveyor, as who else is going to make sure that the best is done for M? I now know so much more about gastro conditions and food allergies than I ever anticipated needing to know. I’ve had to learn coping mechanisms, not just for M to deal with his frustration and anger at being ill, but to help us cope as well. The years of not having an answer have taken their toll and both Mike and I have had to re-learn who our little boy is and what makes him tick. I have to be his first line of defense wherever we are and I’m the one in his corner fighting his cause.

One of the hardest things about this illness is that there are no obvious outward signs that M is ill. He is a slight child and even when seriously underweight and struggling with full toilet-training, he has never lacked energy or enthusiasm for life. He may suffer with stomach cramps and joint aches that would floor most adults, but he just gets on with it. His complaints of aching limbs have been ignored for years as I was guilty of thinking of him as a “moaning” child, but now I know that those aches are very real and extremely uncomfortable whilst they last. He has been living the last 7 years with these as his normal, so he only stops when he’s suffering extreme moments of pain. He had then, and continues to have, the most amazing stamina and a reserve of energy that I can only envy. He is constantly on the go and has never let his health problems slow him down. In very many ways, this is his greatest strength, but also the biggest problem for us.

The lack of obvious evidence of his poor health means that people just don’t understand that he is ill and look at me in disbelief when I explain just how poorly he can be and, to be perfectly honest, I don’t blame them at all. He doesn’t look like a child who eats fresh air and frequently manages on less than 8 hours sleep a night; but he is.

I don’t think that Mike will mind me sharing that he has struggled to come to terms with M’s condition. I have an advantage in that I have grown up living with my own T1 diabetes. I know that these things can be survived and have just got on with it. Mike has found it harder and has longed for an easier fix than the road we seem to be travelling down at the moment. Of course, we now have a diagnosis and that has helped us all. Being able to put a name to the condition, even though it’s so rare that no-one ever seems to have heard of it, means that our fight has not been in vain and we can no longer be dismissed as fussy parents. This is M’s life for now and for the foreseeable future, and as his parents, our job is to ensure that he learns how to make the best of a bad situation.

M has struggled too, as you would expect and his levels of frustration at times are massive. Not only is he restricted by what he can eat and how his body reacts, but he also has to deal with the knock-on consequences. It is no longer possible for him to go home for tea with his friends, attend birthday parties, participate in cooking at school or even have a Christmas or Easter treat, without me having to provide a detailed list of what he can and can’t eat and the inevitable 20 minute discussion with the adult in charge about his condition. We encourage him to have a go at whatever he wants and refuse to let his condition dictate who he is or how he lives his life; and a big thank you has to go to my parents who brought me up with that very same approach to T1D and my life.

He acts out – he kicks and hits and shouts and bites – and sadly the people who have to survive the mood swings are us and G. G has had a hard role to play as the big sister to a poorly child. She worries about his health and I know struggles when we have to disappear off to London for the day for his hospital check-ups. But, she is also a child and has her own challenges to deal with. My children are the best of friends and would defend each other to the end; but are also the worst of enemies. It has become extremely important for us to invest as much time in G as we can and the last couple of months have enabled us to do just that far more than before. She recently took part in a music event organised by the local authority music education department and her clarinet skills were considered good enough to allow her to play with the wind band. This was something just for her and she loved every moment.

She has also been invited to join the local swimming club and that is something we are keen to encourage her to do. There was a point when we wondered a couple of years ago if she’d ever learn to swim, but she is now excelling at it and her teacher invited her to join the Club to see how she gets on. It’s an additional time commitment on a weekly basis for us as she will need to attend at least 1 extra training session a week as well as competitions, but we wouldn’t have it any other way.

I’m proud of both my children – M for his stoicism in dealing with his condition and making the most of life; and G for her continued hard work at school and at her after-school clubs. She may not like the fact that M misses school regularly to attend hospital appointments, but she admits that she wouldn’t want to have the blood tests and diet that he has. Neither child has an easy cross to bear right now, but I hope Mike and I manage to get it right enough to see them successfully and happily through to adulthood.

First Christmas

Baby steps

Dietary Challenge #1

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The first thing to tackle was the introduction of the MEWS diet into our everyday life. M was a child who loved his food and was always keen to try new things. Having to take out some familiar favourites as well as the trusty fallback of chips was not going to be easy, especially as M would no longer be able to eat his all-time favourite meal: egg mayonnaise sandwiches!

Consider having to give up eating chocolate, fish and chips, roast dinners, cooked breakfasts and milkshakes to name but a few. That would be hard enough for your average adult to do and yet we were asking it of a 5 year old boy. No longer would M hold the family status of being able to eat “everything”; he was now reduced to having the most difficult and restrictive diet of us all. It is truly a credit to him at how brilliantly he took to this proposal. I think that this is when we first realised just how difficult the previous 5 years had been on him and how unwell he must have been feeling. It was pretty much without complaint that M stoically accepted the dietary challenge and 18 months on, we are still impressed with his positive attitude about it.

No longer could I resort to my freezer fail-safes on nights when time was running short or I didn’t want to cook. More or less every meal had to be cooked from scratch as it was the only way I could ensure that none of the forbidden five made it’s way into his meals and I became an overnight expert in reading and interpreting food labels.

From an outsider’s viewpoint, it’s extremely difficult to even begin to comprehend just how tough our new dietary challenge was. Perhaps the easiest way to de-mystify the impact and adjustments we had to make, is to show a “before” and “after” set of scenarios:

Before		After


Weetabix		Wheat-free cereal
Milk		Coconut or rice milk
Toast		Rice cakes
Butter		Dairy and soya free spread
Jam		Jam
Biscuits		–
Fruit snacks eg. Yoghurt covered fruit flakes		Fruit snacks eg. Fruit yoyos or stars
Fresh fruit		Fresh fruit
Sandwiches		Rice cakes or corn thins
Ham		Ham
Cheese		–
Crisps		–
Yoghurt		–
Mashed potato		Mashed sweet potato
Chips		–
Jacket potatoes		–
Tuna Mayonnaise		Tuna with coconut cream
Egg mayonnaise		–
Fish fingers		–
Sausages		Wheat-free sausages
Pasta		Wheat and egg-free pasta
Pizza		–
Ice-cream		–
Chocolate		–

The biggest problem I had with a lot of the “free from” alternatives offered in supermarkets is that potato flour is commonly used as a wheat-free substitute for flour. The initial ban on potatoes made this first dietary challenge a real test of my inventiveness and made Google one of my best friends!

I also had to tackle the issue of M’s weight. He had only been gaining a small amount whilst on his previous “normal” diet and now we were introducing a diet so healthy that he would naturally lose weight on it if I did nothing to counterbalance the lack of fats. I had to learn to put “added fat” into my cooking wherever possible and M went from having 1 or 2 packets of crisps a week to having 1 a day. His lunch box at school was now filled to over-flowing with fresh fruit and veg – thank goodness it was the summer and he could have strawberries galore as a treat – and I’m sure could have won prizes for just how healthy it was. He also was allowed to take an additional snack into school for mid-morning as there was nothing substantial to see him through the long morning session between breakfast and lunch.

Whilst we had dabbled previously with removing wheat and dairy from M’s diet, this was the first full-on approach to tacking his health problems. Dr Hill was confident that food allergies were a part of M’s illness, though we needed to establish which foods he was reacting to and whether it was as simple as “just” a food allergy. Unlike the earlier attempts, we were also warned that it could take at least 8 weeks before we saw any signs of improvement. This small, yet critical piece of information had never been given to us before, but proved vital as it did indeed take nearly 9 weeks until we started to see some changes in M’s toileting habits.

I am still amazed that we managed to go through so many medical institutes without someone thinking to tell us that the process could take so long. Looking back now, it seems obvious that the food needs to be completely expelled from the body and no trace left behind before the body can start to repair and yet, it had been assumed that we would know that – or perhaps it’s just that the gastro doctors we had seen before had not known this themselves.

By the time we reached September 2011, although we still did not have all the answers, M’s health had improved and we were well on our way to our final destination.

Reaching London

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In June 2011, we all set off to London for the first of very many visits to GOSH. Walking through those doors for that very first time is an experience I’ll never forget. Having heard so much about GOSH over the years, I had never imagined that one day we would be visiting in what felt like a last-ditch attempt to help our son. I was filled with awe, hope and finally a sense that we would now know one way or another whether something could be done to help him.

It was such a momentous occasion, that we had brought G with us too, feeling that it was important for her to be part of this new journey we were embarking on. I will be forever grateful to her godfather, Uncle A, who was on hand in London and able to whisk her away for an hour to play, whilst Mike, M and I waited to meet his consultant. The only problem was that M really didn’t want to stay with us and would have much rather disappeared to the park than sit and talk to yet another doctor in yet another hospital.

We didn’t have to wait too long and we were quickly ushered into a room with Dr Hill and a member of her team. Unlike many of the other medics we’d already seen, there was no sense of there being a time limit and I was able to fully explain what had brought us to her door. We went right back to the beginning, looking at every aspect of our 5 year journey so far. She asked probing questions and actually listened to our answers; she examined M; considered his height and weight; looked at the food diary that I’d been faithfully maintaining for months, before finally sitting back in her chair.

Perhaps I’m now adding to the sense of drama, but as I look back at the moment that was about to change all our lives, I can almost taste the palpable tension in the air. You have to remember that by now, every doctor we had seen had diagnosed toddler tummy, had rejected the idea of food allergies and felt that there was nothing wrong with M at all. If I were to discover the words “Munchausen syndrome by proxy” scrawled across M’s medical notes somewhere, I really don’t think it would surprise me.

Dr Hill looked at Mike and me and stated, simply,

“Well, there’s obviously something very wrong with this little chap”.

I could have cried, or possibly kissed her at that point! From that moment on, every difficulty we had faced over the past 5 years faded and we had a sense of purpose and of how to move forward.

Whilst usually favouring an investigative set of scopes initially, as we were already old hands at working within the constraints of a restrictive diet, Dr Hill sent us to the Dietician to discuss starting M on a MEWS diet. This meant that for the next 3 months at very least, M would be Milk, Eggs, Wheat and Soya free and, for good measure, because of my own problems with potatoes, we had to take those out of his diet too. This felt like a daunting task, but I knew I would do anything I needed to to seek a resolution for M’s problems. The dietician was fantastic and spent nearly an hour talking through how I could feed my hungry child whilst excluding all these food groups. Laden down with leaflets galore, the all important follow up appointment for September and several phone numbers to give me access to the help we would need, we left GOSH and headed for a local restaurant to enjoy our last “normal” meal for a long time.

As we sat waiting for lunch to arrive, I phoned my Mum to give her the news. She now says that she could hear the relief in my voice and I’m not surprised. I felt as if a huge burden had been lifted from my shoulders, all because one individual had listened and believed what I had to say about the health of my child. There was no question about our parental instincts, simply affirmation. We were right to have pursued in our goal and though we were still to wait another 18 months to get the final diagnosis, we knew that suddenly the future looked bright.

7 years to diagnosis

Searching for an answer

Tag Archives: food allergies

Another day..

What, no tea?!

Day One – Sunday May 19th

An unexpected hiccup

National Eosinophil Awareness Week

When life gives you lemons…

First Christmas

Baby steps

Dietary Challenge #1

Reaching London