Tag Archives: allergic reaction

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.

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.

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.

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.

7 years to diagnosis

Searching for an answer