Tag Archives: Allergy

Where there’s hope

“Where there’s hope, there’s life. It fills us with fresh courage and makes us strong again”

This has been a quote that has resonated with me over the last week. As I wrote in my last blog, we have been struggling with a relapse that has left us all feeling despair and wondering what our next steps were destined to be. Dealing with IT changes and financial year-ends at work, as well as M’s challenging behaviour at home, has left me feeling battered, bruised and emotionally fragile.

In the midst of the week, I desperately needed a little hope to remind me that there is more to life than the rubbish I’ve been dealing with recently and it came on Thursday, from what was, to me, a surprising source.

M is fast-approaching the end of his final year in Infants and will be moving up to our local Junior school in September. G has been there since Christmas and has really flourished and we felt that it was the right place for M to continue his education. We haven’t had the support we had hoped for or that we are entitled to from M’s current school and I have been concerned as to whether things would improve when he made the move.

On Thursday, I arranged a meeting with the Head teacher, SENCo (Special Educational Needs Co-ordinator) and class teacher to discuss all of M’s needs from the EGID to the newly diagnosed dyslexia and dyspraxia. I spent considerable time reading around what we were entitled to in terms of support for all of these issues, spoke to our local authority about whether we could hope for any help from them and what exact questions I needed to be asking to make sure my boy gets the help he so desperately needs in the classroom setting.

I went to the meeting with the lowest of expectations as I know how hard the world of SEN can be from following the experiences of others and talking to those in the know, but I was quickly proved wrong. The staff members were interested in M, asked questions along the way and made suggestions of how best to help him within the classroom. They made copious notes about what small things we have already found help him and where we need to make improvements to support him more.

The SENCo had already put a phone-call in to his current school to ask for information from them about what procedures, if any, they’ve put in place for him and had read through the report from the Dyslexia Centre which contained the Educational Psychologist’s recommendations for help. She checked whether we had made the referral to Occupational Therapy, which our GP did during the week, as she was happy to do that for us, but felt it would be quicker coming from the GP than from school.

Even before the OT referral eventually happens, the school are happy to support his dyslexia and dyspraxia by:

the use of a writing slope (provided by us!) in the classroom
the use of triangular pencils and pencil grips (again from us) in the classroom
photocopying or printing worksheets onto yellow paper as this helps M to see writing clearer
the use of lined, yellow paper when he’s writing or doing spelling tests, where practical
the use of a stress ball to warm his right hand before he starts writing
encouraging him to use a yellow overlay when he’s reading as this helps him track the words

Then we got to the biggie, the matter of M’s EGID, multiple food allergies and his current frustrations and emotional issues surrounding it. I printed out a letter for the school, which I sourced from FABED and which I could personalise to highlight M’s exact condition, allergies, medicines and reactions. Both his class teacher and the SENCo gave the document a quick scan and then listened intently as I explained the finer details of what this condition entails.

One of my biggest concerns was how they would handle it if M experienced a soiling accident at school. We have been fortunate that over the last 3 years of his education, this has happened only a handful of times, but given his current relapse and all the anxieties of moving up to a new school, I wanted to pre-warn them that this could be an issue. They instantly agreed that there would be a need for additional support for M in case this happened and wanted to discuss it further with the Head, particularly as they don’t currently have a shower or suitable facilities to make changing him easy. At no point did I feel that this was an inconvenience and whilst I don’t expect miracles, or funding, to happen overnight, I am confident that they will find a way to make sure his needs are met.

I had discussed the meeting with M the night before as I felt it important that he understood that the school wanted to help him and also to gain an insight into whether there was anything he was particularly worried about regarding the move. M has had some issues in building friendships and he was worried that the other children in his class would ask him a lot of questions and then be mean to him because of the food allergies. He is overly sensitive and as emotionally fragile as me at the moment and this was obviously playing on his mind a lot.

I raised M’s concerns and was thrilled to hear his class teacher instantly suggest that they discuss his food allergies as part of the circle time during the first week of term. They will be talking about all the children and asking them to share something about themselves, so will be a perfect opportunity for M’s allergies to become known in a non-confrontational way. M can choose to have as much involvement in that discussion as he wants and will help him understand what the other children are told about him.

The staff were concerned and interested enough to reassure me that they would do everything they could to support M in school. They will be working on a health care plan as well as some short-term targets that will cover all of his health issues and educational needs. They will ensure that all adults who come into the school, and not just those dealing directly with M, are made aware of his multiple allergies and that his photo, name and list of those allergies will be displayed in the staff-room. Most importantly, they will maintain a strong communication link between us and them, to make sure that any problems that arise either from their point of view, or from home, are dealt with quickly and not left to develop into something worse.

My difficult week has ended with some hope that, whilst I can’t control M’s health, we will be able to influence his education and that hope really has given me some courage and has renewed my belief that we are strong enough to walk this path.

Let them eat cake

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I love making cakes.

Actually, to be more accurate, I love creating decorated cakes for my children’s birthdays, but I’ve never been keen, or really that good, at the baking part. Even when I was allowed to bake “normal” cakes, I could never get them to rise.

The last normal cake I made in our household for G’s 2nd

When I had to adapt to wheat and dairy-free cakes to allow for G’s allergies, I managed, but still failed to get the things to rise. Over the years, my cakes have more resembled flat pancakes than respectable sponges. I have been known to suffer “sponge-envy” when seeing the beautifully rounded Victoria sponges made by friends and colleagues.

My first wheat and dairy cake for G's 3rd and very, very flat

My first wheat and dairy-free cake for G’s 3rd and very, very flat

G’s 5th cake and still not much sign of it rising!

Ironically, cupcakes have never been a problem. Whilst my sponge mixes have never made the perfect sponge, they have always made beautiful cupcakes and one year I even resorted to a cupcake tower for G’s birthday cake as something I could be proud to present to the world.

Wheat and dairy free for G, but still contained eggs…and still flat

M’s last almost-normal cake for his 5th

Then came along the ultimate challenge. Not only did my cakes need to be wheat- and dairy-free, but I also had to remove the soya and the eggs. I’ve tried out very many recipes* for cakes in the last 2 years and have met with varying success. I’ve attempted baking with baking powder, xanthan gum, bicarbonate of soda, oil and water and even a mix of cider vinegar, oil, baking powder and bicarbonate of soda…and still those cakes won’t rise.

I’ve tried Doves Farm Gluten free self-raising flour, which is a blend of rice, potato, tapioca, maize and buckwheat flours and comes with helpful recipes on the side of the packet and met reasonable success. I’ve tested Innovative Solutions pure brown rice flour, which works okay, but can taste a little granular as a sponge. Guess what? Still my cakes won’t rise.

This year’s first attempt, a Lego 7, but still a little flat!

A layered Mini-golf cake for G’s 9th

This year, for M’s 7th birthday, I came to my final conclusion. If my cakes won’t rise naturally, then I will just have to create the height I crave by stacking layers. The end result more than exceeded my expectations and what’s more, I had a lot of fun by creating a rainbow inside to wow the group of 6 and 7 year-olds who got to eat it.

This one needed to be higher, so my secret was…

…to stack the rainbow layers. Mission accomplished!

I will continue my search for the perfect M-friendly sponge cake recipe that not only tastes good, but would convince even the harshest critics that cakes can be made to meet any dietary requirements. I will continue to create masterpieces that look pretty good, even if they don’t quite make the taste grade. And I promise this: that if I find that right combination of ingredients and technique in my quest, I won’t hesitate to communicate it, especially if I finally manage to achieve that elusive thing – a sponge cake that rises!

*all cake recipes attempted are included on my Everything free Recipes page

Fabulous FABED!

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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.

Exhausted!

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It’s been a long, exhausting, but fantastic weekend. We’ve got so much more from this weekend than we had expected or even hoped we might.

Saturday was a busy day at the Allergy and Free from Show and I really wish we’d had the 2 day visit we’d originally planned. Just to give you an idea, the photo below is a small part of the hoard of M-friendly goodies we came back with:

We managed to pick up some of our family favourites at “show” prices, which meant that lots of the products were at half price or less, but also found some new things too, which were either new to the market by some familiar names or simply new products to us. Amongst the new treats we discovered were

Bfree Gluten and wheat free tortilla wraps – perfect for M and G’s lunchboxes
Gluten, wheat and egg free spaghetti – the manufacturer assures me it won’t go sticky during cooking like so many other brands do. This is one that we’ll have to try and see
MozzaRisella – a mozzarella-type cheese made from rice and containing no dairy or soya
KoKo Strawberry flavoured coconut milk – not just a new flavour, but now also available as a pack of 3 250ml cartons, perfect for a treat on a day trip

We found that all the stall holders were knowledgeable, informed and friendly. Nothing was too much trouble for them and they all took their time to talk with not only Mike and me, but M and G also. We were also lucky enough to meet the wonderful folks of both Fabed and Parentsown and discovered them to be even more delightful and helpful than they are on their respective web forums. Finally, the children were collared by well-known TV weather girl, Sian Lloyd who had her very own weather map on hand to show the pollen count and problems experienced by hayfever sufferers in the UK. She spent a long time teaching both G and M how to present the weather, had photos taken with them and chatted to us about M’s condition and why we were visiting the show.

My round-up of the show has to be M’s quote on whether he enjoyed our visit:

“It’s the best show we’ve ever been to, Mummy. Can we come again?”

Sunday was another great day, although the sunshine we had been hoping for didn’t materialise and the morning was overcast and grey. We made our way across London and eventually reached Battersea Park to join around 3,996 other people in the 5K RBC Race for the Kids raising money for Great Ormond Street Hospital. It may have been a less than sun-filled day, but the number of people taking part was amazing to see and I can’t wait to hear the final figure for the amount of money raised. We didn’t rush to get to the start early after a late night at Matilda on Saturday – and before I forget, I highly recommend a visit to the Cambridge Theatre to see this awesome show – but we felt the camaraderie and excitement of the walk nevertheless. As requested by M and G, we had taken along the scooters and they happily led our way as Mike and I followed, alternating between a walk and a gentle jog.

We had some highs and lows along the way with M as expected as he took the occasional tumble from his scooter (we’re still working on the balance issue as he struggles because of the dyspraxia) and minor tantrums as it appeared that G might beat him across the finish line. However, finish it we did and we collected our medals and goodie bags, completed a quick tour of the entertainment provided for those who took part and even fitted in a play at the fantastic park in Battersea, before heading back across London for lunch and our train back home.

I’m still waiting for a final couple of donations to be made before I can update you on our personal family fundraising total, but, for the interim, here’s a photo of M in his race t-shirt, RBC lion and medal.

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.

7 years to diagnosis

Searching for an answer