Hyper-sensitive M

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

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

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

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

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

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

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

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

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

The importance of doing research

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

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

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

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

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

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

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

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

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

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

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

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

The final answer?

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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.

Frugal and allergy-friendly?

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Nowadays, we are often encouraged to live a frugal life due to increasing food prices and uncertain incomes, but, as I discovered very early on, that’s just not possible when you’re catering for multiple food-allergies. One of the most noticeable impacts of the last week has been on our bank account.

We do get a very few items on prescription for M because of his allergies, but the list is limited. Every month, in addition to the medicines M needs, we get 4 loaves of gluten-free brown rice bread, 2 packets of vanilla wafer biscuits, 2 500g boxes of gluten-free pasta and 1kg rice flour. This is enough for the month and allows me to bake a few treats or desserts for the children.

However, this just about covers the gluten-free aspect of the diet, but doesn’t allow for the dairy, egg and soya free parts. Every month, we have to buy cereal, margarine, mayonnaise, milk, corn thins or crispbreads, coconut cream, sausages, fish finger or fillets, chicken nuggets, yoghurts, peanut butter, stock cubes, date bars, cereal bars and fruit snacks; all of which have to be gluten, wheat, egg, soya and dairy free. Occasionally I invest in dairy and soya free chocolate treats, ice cream or chocolate spread, but the cost of those is phenomenally high. Imagine spending £7 on a small box of just 9 truffles or £7.50 for a 500ml tub of ice-cream just for the children! My monthly shop is predominantly filled with food for M and G and rarely sees change from £100 for their food alone. That, of course, does not take into consideration my weekly shop for fresh produce: fruit, vegetables, meats and fish, nor the bits and pieces for Mike and me.

I read, with awe, the forums on Martin Lewis’s website, Moneysavingexpert as hoards of savvy shoppers talk about spending no more than £50 a week to feed a family of 4 and frequently speak in terms of a monthly spend of between £150 and £200. If I had children without allergies, I have no doubt that I could do that, or at very least have a good try, and we would all still eat well, but with the dietary requirements I have to accommodate, that just isn’t possible.

I cook from scratch when I can, not only to be frugal, but also to know what the children are eating and that the food is M-friendly, I shop cannily and have gone down a brand as Martin Lewis suggests, but I’ve yet to discover any major answers as to how to be frugal and allergy-friendly.

Walking a mile

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

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

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

	M	Me	Mike
Breakfast	–	Crispbread x2 with peanut butter	Bowl of: Cornflakes Raisins Rice milk
Lunch	Crispbreads x3 Ham Cucumber (3 slices) Chips Carrots (2 sticks) Tomato ketchup	Crispbreads x4 Ham Cucumber Carrots Tomatoes Mango	Crispbreads x4 Chips Carrots Cucumber Tomato ketchup Tomatoes Mango
Dinner	Salmon New potatoes (3) Peas Corn Cucumber Chocolate bread Strawberries Raspberries Grapes Ice cream	Salmon Rice Grilled tomato Caesar salad Raspberries Strawberries	Salmon New potatoes Peas Grilled tomato Caesar salad Raspberries Strawberries Banana Grapes
Snacks	Nkd Berry Blast date bar Ginger cookie Banana (1/2) Blackberries	Fruit tea

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

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

The toughest day yet

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I nearly titled this blog “Thank Goodness It’s Friday”, but I don’t think that would really reflect just how testing today has been. Yes, today was definitely the toughest day of our challenge so far. Today was the day when Mike and I only ate what M ate, nothing more, nothing less; even down to drinking the dreaded protein shake. That last was my biggest hurdle. The Neocate smells revolting when you mix it up and I still remember having some tentative sips when M first started drinking it *shudder*. But, I promised M I would drink it, so drink it I did.

Ironically, M wasn’t at school today as they had an Inset day leading into half-term. Nevertheless, I packed Mike’s lunch as if it was M’s and even got permission from the boy himself that Daddy could borrow his lunch-box for the day. Well, if you’re going to eat like the child, you might as well get the perks of the Star Wars lunch-box as well! Below are the photos of the treats that were waiting to see Mike through his day:

Having M with me for the day has meant that, more or less, I have matched him mouthful for mouthful and at the same times he eats too. The main difference has been that I managed a sneaky cup of black coffee whilst M had a glass of squash.

	M	Me	Mike
Breakfast	–	–	A small handful of raisins
Lunch	Crispbreads x2 Ham Cucumber (3 slices) Fruit smoothie Bear’s Fruit yoyo Apple (1/2)	Crispbreads x2 Ham Cucumber (3 slices) Fruit smoothie Bear’s Fruit yoyo Apple (1/2)	Crispbreads x2 Ham Crisps Cucumber (3 slices) Olives (3) Fruit smoothie Bear’s Fruit yoyo 2tsp pineapple chunks
Dinner	Starter of prawns, salmon & mackarel Marks & Spencer’s Gluten-free breaded cod fillet Chips Peas Corn Carrots Solesse egg-free mayonnaise	Starter of prawns, salmon & mackarel Marks & Spencer’s Gluten-free breaded cod fillet Sweet potato wedges Peas Corn Carrots Solesse egg-free mayonnaise	Starter of prawns, salmon & mackarel Marks & Spencer’s Gluten-free breaded cod fillet Chips Peas Corn Carrots Solesse egg-free mayonnaise
Snacks	Nkd Cocoa Delight date bar Fruit Factory Fruit string	Nkd Cocoa Delight date bar Fruit Factory Fruit string	Nkd Berry Blast date bar Orgran Gluten-free Outback Animal Chocolate biscuits

As you will no doubt notice, there are a few differences between what Mike ate and what M and I had today. We had to assume that M would eat as normal and so prepared Mike’s breakfast, lunch and snacks according to an average day in our household. Who could have predicted that M would decide that he didn’t want breakfast today and had less lunch than usual too. Nevertheless, despite these minor changes, Mike still had a good idea of how M survives his average day at school.

So, what have I learned from today? Well, I couldn’t eat the Bear Fruit yoyos regularly nor drink the smoothies, as both were too sweet for my palette. The Nkd date bar was a revelation as I’m not usually a fan of dates, but enjoyed this far beyond my expectations. As for the Neocate (protein shake), well, the less said about that the better, though I found it drinkable when flavoured with Chocolate Nesquik. Mike and M prefer the Crusha Strawberry flavouring, but that was a step too far for me. Most of all, I have finished the day feeling fairly full which I attribute to the protein shake drunk with dinner. I wouldn’t want to drink it every day, but I can understand how it leaves M feeling satisfied.

I can’t believe that our week on M’s diet is nearly over and that tomorrow will see the “experiment” come to an end. It has been lovely to see how excited and proud M has been about us sharing his dietary experiences this week. He has told all and sundry about Mummy and Daddy eating his food this week and I am so glad that this has been something we could all live through together. This isn’t the option I would have chosen when we first had M and certainly was never the road I thought we’d be travelling down, but now I really know what a day in M’s life is like.

On the road

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What has been most interesting about this week is the way that each day has presented a new and very different challenge. Today’s was for Mike and, in many ways, it was one he looked forward to tackling. As part of his job, Mike usually travels to another site at least one day a week. On that day, he is given an allowance which enables him to buy lunch and, if necessary, dinner too.

We had been planning to make Mike a packed lunch for the day to make it relatively easy for him to stick to M’s diet, but when faced last night with what was in the fridge, he proposed something different. He decided to try and buy M-friendly food whilst he was out on the road, using nothing more than the Motorway services that most of us would have access to when we’re travelling by car, so no sneaky trips to a local supermarket where we know the options would be far greater.

I know that to many this may not sound that hard, until you begin to think about the options you have at a service station:

Sandwiches? No wheat or gluten allowed, or the dairy from the butter, or egg from the mayonnaise.
Pasties? No wheat or gluten again.
Chocolate? No dairy or soya
Crisps? These are potatoes, so must be okay, right? No, it depends on the flavour, but avoiding wheat, gluten, dairy and soya is actually harder than you’d think when it comes to crisps.
Chips? A lot of the fast food chains coat their chips in flour to make them crispy, so again it’s a no.
Burgers? Well, no to the burger roll because of the wheat and gluten, and probably no to the burger as that’s unlikely to be 100% beef and is likely to contain wheat rusk.
Gluten-free cakes or biscuits from coffee shops? These usually contain dairy or soya or egg, so are all a no. I’ve yet to find anything that M can eat, even with the allergy-friendly alternatives offered.

It’s been an interesting experiment and explains why we usually pack up our own lunches and snacks to ensure there’s something M and G can eat. Take a look below to see what Mike ended up with today:

	M	Me	Mike
Breakfast	A handful of raisins	Toast (1) with peanut butter	Bowl of Cornflakes Raisins Rice milk
Lunch	Crispbreads x2 Ham Cucumber (3 slices) Olives (3) Fruit smoothie Bear’s Fruit yoyo 2 tsp pineapple chunks	Crispbreads x4 Ham Cucumber Carrot Mushrooms Pimiento stuffed olives	1 large pack of sushi without the soy sauce Nkd date bars (2)
Dinner	Gluten free pasta with tuna, carrots, peas, corn & Solesse egg-free mayonnaise* (2 small bowls) *available from Asda	Gluten free pasta with courgettes, corn, asparagus, mushrooms, onion, garlic, tomatoes & coconut cream (1 pasta bowl)	Gluten free pasta with courgettes, corn, asparagus, mushrooms, onion, garlic, tomatoes & coconut cream (1 pasta bowl)
Snacks	Nkd Cocoa Orange date bar Nkd Berry Blast date bar Banana Grapes	Fruit tea	Apple juice

Mike’s one comment has been that today he has felt the most full since we started on M’s diet. The date bars are, apparently, extremely filling and even his lighter lunch today left him feeling more satisfied.

Before I forget, a couple of people have asked whether following M’s diet this week has seen any weight loss as I was anticipating it might. I can confirm that, having weighed myself before the diet started and again this morning, I have lost just over 3lbs in 4 days. I need to convince Mike to weigh himself to see if he’s seen a similar loss, though I’m not as confident that he knows where he started!

Half-way there

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

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

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

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

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

Our meals today looked like this:

	M	Me	Mike
Breakfast	A handful of raisins	Melon & pineapple chunks	Bowl of Cornflakes Raisins Rice milk
Lunch	Crispbreads x2 Ham Cucumber (3 slices) Olives (3) Fruit smoothie Bear’s Fruit yoyo “Wot no dairy” Peach & Apricot yoghurt	Crispbreads x4 Ham Cucumber Carrot Mushrooms Pimiento stuffed olives	Leftover French Onion soup (Home-made & 100% M-friendly) Apple
Dinner	1 ladle Chicken & sweetcorn soup Toast (2 slices) Cucumber (3 slices) Ecomil Vanilla almond milk dessert Rocky Road	1 bowl Chicken, sweetcorn & mushroom soup Toast (3) – Ener-G brown rice flour bread	1 bowl Chicken, sweetcorn & mushroom soup Crispbreads (2)
Snacks	Nkd Cocoa Orange Date bar Lo-profin vanilla wafers (2) Fruit Factory fruit string Fig & Quinoa cookie (1)	Fruit tea Rocky road	Banana Rocky road

Another day..

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…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?!

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Today has had a tricky start. I hadn’t thought of the impact of being in the office and not being able to have a cup of tea. I thought I was well prepared and had packed my lunch last night whilst I made those for M and G; and had even thought ahead to the matter of breakfast as I wouldn’t be able to have my toast in the office, but I completely forgot about my love for a cuppa.

My morning routine sees me catching the train into work, walking across to the office and putting the kettle on for that first cup almost as soon as I’ve walked through the door and switched on my computer. Today I did the same and then realised that I couldn’t have my usual cup as I can’t add any milk and I’m definitely not a fan of tea without the white stuff. Fortunately, I do have a small number of fruit teas in my desk drawer, but I have to confess that a morning brew of Cranberry, Raspberry and Elderflower does not hit the spot in quite the same way.

Added to that, today saw a small selection of chocolates on offer as there was an office birthday to celebrate. I stayed strong and avoided the temptation and was intrigued to find out whether Mike avoided his office temptations as well. Working in a local council office, Mike has found that there are regular and ready supplies of cakes, biscuits, chocolates and sweets on hand, sometimes to celebrate special occasions, but frequently there “just because”. He’d already confessed that this would be the hardest part of his week on M’s diet, so we will have to monitor closely to see how we manage these potential pitfalls. A text arrived from Mike around lunchtime, “It’s someone’s birthday at work, so I can’t have any of the lovely choc cake or cookies brought in. She did, however, bring some bananas, so I’ve had one of those.” – I’m so glad to learn that I’m not the only one who’s had to refuse birthday delights today.

We haven’t fared too badly today, though my lunchbox felt as if it didn’t contain much more than fresh air. Both Mike and I had drinks arranged for after work, albeit separately. I checked with Google to make sure I knew what was okay for me to drink and found that no hardship as all wines and most spirits are gluten free. I settled for the safe bet of vodka and cranberry juice and that saw me through the afternoon. I did, however, learn just how hard it was to abstain from the other temptations at the pub. Around 5pm, an attack of the munchies hit my colleagues, who promptly ordered plates of chips, onion rings and nachos to share. Unfortunately, I couldn’t have any of them. My colleagues questioned why I wasn’t eating anything and this gave me a great opportunity to share a little about M and what he has to live with day to day, which was part of the raison d’etre behind this Awareness week. They tried to persuade me that I could cheat a little as M would never know, but that defeats my purpose. I would know and it’s not what I’ve set out to do this week. It’s about educating others and I feel that I’ve managed that at very least.

Mike will have to avoid beer on his night out, but I’m sure that he will be able to manage that one too.

Here’s our menu for today:

	M	Me	Mike
Breakfast	A handful of raisins	Sliced apple	Bowl of: Cornflakes Raisins Rice milk
Lunch	Crispbreads x2 Salami & Ham Cucumber (3 slices) Olives (3) Fruit smoothie Crisps (Plain) Bear’s Fruit yo-yo	Crispbreads x4 Salami & Ham Cucumber Carrots Olives	Cold chicken Mashed potato Corn Peas Carrots Courgettes Gravy
Dinner	3 tbsp cooked rice 2 tbsp Chicken Korma (onions, chicken, corn, garlic, coconut cream, carrots, courgettes & Sainsburys Free-from Korma sauce) 1.5 Poppadoms	Cooked rice Chicken Korma (onions, chicken, corn, garlic, coconut cream, carrots, courgettes & Sainsburys Free-from Korma sauce) Poppadoms	Cooked rice Chicken Korma (onions, chicken, corn, garlic, coconut cream, carrots, courgettes & Sainsburys Free-from Korma sauce) Poppadoms
Snacks	Nkd Cocoa date bar	Numerous cups of fruit tea	Banana Apple

7 years to diagnosis

Searching for an answer

Hyper-sensitive M

The importance of doing research

The final answer?

Frugal and allergy-friendly?

Walking a mile

The toughest day yet

On the road

Half-way there

Another day..

What, no tea?!