Tag Archives: Special Diets

Fabulous FABED!

We have once again enjoyed a busy weekend. Thanks to the wonderful organisational skills of the dedicated group of parents who set up FABED back in 2005 to support parents and families of children with EGID, we enjoyed an amazing weekend at Legoland Windsor.

What made this weekend so special was that it was organised with our EGID children in mind. A full day to meet other families who are carrying the same load as us and who know how it feels to be fighting a never-ending daily battle that most of our friends just can’t comprehend. An opportunity for M to meet children who are just like him, suffer from the same condition and have to live with multiple food-allergies to a greater or lesser extent. A chance for G to meet others whose siblings are constantly in hospital, or making hospital visits and who are often the focus of so much attention.

We met bright and early on Saturday morning and were delighted to see that there were in the region of 40 families there, all of whom had at least 1 child with EGID, though we got to know one family where all 4 children were affected to some degree. This was our first FABED event, but were instantly made to feel welcome and amongst friends. We recognised some familiar faces from the Allergy Show a couple of weeks ago and both M and G instantly made some new friends.

Unfortunately M suffered a bad day, but we had the advantage of being able to seek refuge in the suite at the amazing Legoland Hotel. There was a dedicated medical room to provide privacy for those who needed it for feeding or medical purposes. The Suite itself had tea and coffee-making facilities for the parents and a play area filled with Lego for the children to enjoy. We took an hour and a half out of the day to give M some much needed downtime and the children enjoyed attempting to build the biggest tower possible with some of their new friends.

The evening showed just how much hard work and thought had gone into making this an unparalleled get-together. A buffet dinner was provided for the FABED families, with full details of all ingredients used to prepare the dishes and options available to cater for even the most difficult of diets. Those children unable to eat were able to spend time in the play area, which was next door but out of sight of the food. M was delighted to be able to choose from such a wide selection of foods and we were reassured that we knew what each dish contained and what he could and couldn’t eat.

As soon as we heard about this day out, we knew we’d be going along. It would have taken something extreme to keep us away. M feels so alone in his allergy world that the opportunity to show that he really isn’t on his own and to allow him to chat and get to know other EGID sufferers was one that we couldn’t turn down. He made particular friends with young R, who is a year older, but feels the same emotions and frustrations as M. They were able to have an honest chat and M values this new friend who is “just like me Mummy, but he can eat even less, sometimes has to be tube fed and has accidents too.” R’s big sister, F, was a great source of comfort to G also as they share the same experiences of a younger brother with EGID as well as struggling with their own food allergies.

I also got to meet the delightful mumannie123, who writes the blog, Food for Thought: Boweled over by food allergies, recipes and advice. We have got to know each other a little over the last couple of weeks through our respective blogs, so it was wonderful to finally put a face to the name and spend some real time chatting. We have discovered that we live in the same part of the world, so I’m looking forward to perhaps being able to meet in person as time allows, as there is nothing quite like having a friend who understands what you’re going through from firsthand experience.

We made the decision to make a weekend of it and stayed the night at the Hotel in an Adventurers Room. The lego models and details in these rooms are astounding:

This weekend has been a truly fabulous weekend and my heartfelt thanks go out to FABED and Legoland Windsor for accommodating such a complex range of needs and ensuring that so many families were able to enjoy as normal a day out as possible when dealing with illness. To this family, at very least, it has made a huge difference and has given us a great resource for support for this journey that we now know we are not travelling on our own.

The Secret of the Swap Box

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Well, I couldn’t resist just one more memory to celebrate Fathers’ Day!

This weekend has been a lot less manic than the last. Other than the obligatory Fathers’ Day celebrations on Sunday, we also had 2 very important appointments to keep on Sunday afternoon. G and M took their very first individual Speech and Drama LAMDA exams. It’ll be a wait of another 6-8 weeks until we hear the results, but I’m proud of them both for having a go at this new challenge.

So, we’ve spent time playing games, watching TV, doing some homework and enjoying some quiet family time. We’ve also worked on a project that has become very important to G over the last couple of weeks – her swap box.

This is an idea that was recommended to me about a year ago by a parent at M’s school. She had overheard a conversation I was having with a fellow Mum about having to anticipate when treats might be given out in class to avoid having to deal with M’s frustration when he couldn’t have one. She asked if we’d ever thought of providing a Swap box to be kept in the classroom.

I looked at her blankly, listened intently and then wondered why I had never thought of such a simple solution to this problem. The idea really is an easy one. We provided a box, decorated by M, that was filled with a selection of sweets, biscuits and other treats that were M-friendly. Whenever M is given a treat for any reason in the classroom – birthday celebrations, leaving gifts, rewards for good behaviour, Advent chocolates or Easter eggs – he is allowed to take what he’s been given and swap it for a safe alternative from his box. This means that he never feels excluded from all that is going on and we can be assured that he isn’t being given any food that could cause an allergic reaction.

I had never considered the need for G to have same, but in the last couple of weeks she has been unable to have caramels or chocolates that have been brought into school to share. I was hoping to maybe make it to the end of term (well there are only 5 weeks left) and sort G’s swap box over the summer holidays, but alas, that wasn’t to be. G was adamant that she needed one now and so we found a box and allowed her to decorate it this weekend. I’ve filled it with a small supply of Haribo sweets, fruit snacks and some M-friendly packets of biscuits and she’s taken it into school this morning to stash with her teacher.

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It really is one of the simplest suggestions I’ve come across in dealing with M’s condition and has proven to be invaluable as he has found no need to strop or complain about being different to his friends. After all, when you’re struggling with quite so many challenges, being able to take part with everyone else is really worth it’s weight in gold.

Eating out

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Unsurprisingly, when you’re having to work with any number of food allergies, it becomes a minefield to negotiate when considering going out for a meal. As food allergies appear to become more prevalent in our society, more and more of the larger restaurant chains are becoming aware of the need to make provision and adapt their menus to suit a wider audience. Charities such as Coeliac UK provide their members with a list of “safe” restaurants to eat and offer advice as to what to do when going out for a meal.

For many families like ours, even this information is not enough to guarantee that we can eat out safely. M is our hyper-sensitive, multiple food allergy suffering stumbling block to overcome when we consider eating away from home. One piece of luck we do have on our side is that M is a complete and utter foodie. He loves food and is prepared to try almost anything at least once, unlike his big sister, who has become increasingly fussy the older she gets. He particularly enjoys eating seafood and fish, though he will readily admit that oysters are not a favourite! And yes, he has tried them, but found them a little too salty for his taste.

However, we have been lucky enough to find a small handful of restaurants that do cater to our needs and that don’t appear to cause a negative reaction in M. There is no guarantee that these would suit everyone with food allergies, but they may be worth a go. I would highly recommend contacting the restaurant before your visit to check whether they can confirm if they can accommodate your specific food allergies, taking a look on-line at their allergy-friendly menus and we have found the Dietetics team at GOSH to be extremely knowledgeable too.

Nando’s: Whilst there are obvious foods that M can’t eat (the wraps, rolls and breads for a start), the chicken is gluten and wheat free and, so far, M seems able to tolerate the chips. What’s more, if you’re at all anxious about what the individual ingredients are, each Nando’s restaurant has a Food and Menu specifications book which is readily available. M loves visiting Nando’s, not least because the children’s menu includes a M-friendly ice lolly as an alternative to the frozen yoghurt offered for dessert.

TGI Friday’s have their “Five Easy Pieces” menu, which provides meal options for those suffering from a gluten or lactose intolerance and includes a child specific selection. M has enjoyed the steak, the chicken tenders and the hot dog without problem, though it is possible that the hot dog contains soya. Unfortunately, they are yet to provide any dessert that suits those who struggle with food allergies, but the main courses tend to be large enough to satisfy most appetites in my experience.

We only recently discovered that Bella Italia has a gluten free option on their menus and have been incredibly impressed with the level of service we’ve had when eating there with M. He chose a gluten-free pizza base, which the manager confirmed was also soya-, dairy- and egg-free, and topped it with their tomato sauce, ham and olives. M was in seventh heaven when we discovered this treat and is desperate to go back with the rest of the family in tow. They also do gluten-free pasta, though we have yet to try that out and were able to provide 2 alternatives for dessert – sorbet or M-friendly ice lolly.

The latest restaurant to jump onto the gluten-free bandwagon is Pizza Express. Their gluten-free menu went live on 1 May 2013 and they have now updated the information to detail which ingredients on their menu should be avoided because they also contain gluten. We tried Pizza Express out with the children last weekend when we were at the Allergy Show and were again impressed with the pizzas that arrived. However, they did mess up the order a little by forgetting to add G’s goat’s cheese on her pizza, but otherwise we were impressed with the meal. Sadly, another without a dessert that suits those with multiple food allergies and M insists that the Bella Italia pizza was far better and bigger.

There are very many local or specialist restaurants out there who will also accommodate the most complex of dietary needs, but these should be a good starting point for anyone with children with food allergies. A word of caution to add, these restaurants are not able to guarantee that no cross-contamination will occur within their kitchens, though they work hard to make sure the risk is a minimal as possible. We have found that by talking to the waiting staff and explaining our needs, we get the best service we could ask for and I would recommend asking them what they can do to make your eating out experience the best one possible.

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.

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.

7 years to diagnosis

Searching for an answer