Tag Archives: Allergy UK

Lost in Translation

As Mum to a child with additional health needs, you have to be prepared the minute you venture outside your front door. You don’t just carry with you the medicines, equipment and food items you need to get you through the next few hours relatively unscathed, but also the necessary mental strength to explain your child’s needs to everyone you encounter and ensure that your trip outside of the safe bubble at home goes as smoothly as it possibly can. There are, of course, times when an essential gets left on the kitchen counter and you have to think on your feet and find a solution that will work until you get back home, and, for us, there have been times when, despite the clear explanations given and the seeming comprehension of the waiting staff, mistakes have been made and the children have suffered the consequences of those misunderstandings.

When you add travelling abroad to the mix, those unavoidable stresses become even more intense and, as an allergy Mum, I can tell you that worries about safe food are right at the top of the list. As you may remember, last year we decided to stay in the UK during that first holiday season with a tube in place and had the most amazing week in Cornwall, where we discovered hidden treasures of restaurants and sight-seeing spots that we are still talking about nearly 12 months on. However, we decided that this year we would venture back to a favourite haunt and visit the Algarve in Portugal, with a few extra days in Lisbon tacked on to the start of our trip. We know the resort of Alvor extremely well, but this will be the first time of visiting with such a restricted diet and I have to confess that nerves have been a little greater as we plan our 10-day stay away from home.

One thing I learned early on in our holiday planning with M was to talk to our airline about taking an extra case filled with whatever medicines or foods we will need whilst we’re away and have had superb experiences with both Easyjet to Portugal and Virgin Atlantic to Florida. These conversations paved the way for our long-haul flight to the USA and we found that both the airport lounge and the airline were able to provide safe meals for M when we gave them a little advance warning, but what happens once we’ve landed abroad, especially in a country where we don’t speak a word of the native language? Our back-up plan is our self-catering apartment, which means that there is always somewhere to prepare a simple meal of M’s safe foods without too much trouble, but I do, perhaps selfishly, want a holiday from that daily grind of cooking and be able to enjoy a family meal as we used to do when the children were small. Our previous holidays to Portugal were challenging, but not impossible as M loves fish and seafood which are always readily available, but I worried that the current restrictions might be a demand too far.

Fortunately, there are answers to the anxiety about communicating food allergy requirements in a foreign language and whilst it took a little more effort than originally planned, I got our perfect solution in the end. I started by calling Allergy UK, who offer a fantastic service of providing translation cards which “…feature an allergy alert message, an emergency message and a message for use in restaurants to ensure that your food order is free from the particular allergen that causes your reaction…” and can be ordered in any one of 36 languages to cover 70 different allergens. However, I really wanted a bespoke message detailing M’s current safe foods and unfortunately Allergy UK was not able to tailor their cards accordingly, but they did point me in the direction of the amazing Yellow Cross, a company I had never even heard about until recently.

Thanks to a detailed e-mail conversation with Yellow Cross Director, Jane Harrison, she agreed that it would make far more sense to detail what M can eat, rather than a lengthy list of his many allergens and suggested she spoke to their translator to cost out these personalised cards. We settled on appropriate wording, it was passed to their Portuguese translator and I was quoted a very reasonable £20 for a set of 4 eating out translation cards. I confirmed that we wanted the cards, made payment and in less than a week, the finished credit card-sized cards dropped through our letter box. The cards are printed on card and then carefully laminated to extend their life, and I couldn’t be happier with the finished product. They clearly state the wording I had discussed and agreed with Jane and their service was absolutely faultless. I found Yellow Cross willing to help us with our request and I’m certain that the inclusion of these cards in our travel survival pack will ensure that our Portuguese holiday goes with a swing.

Recognising Allergy Heroes

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MzQ1QzM3M0E4MzFCNjM4QjYzMUY6YWUxNzkyMGNiZWRkMjJhNGIyYWI2YTNlNDZiNGJjODM6Ojo6OjA= Whilst we’ve been settling back into life at home after our amazing Italian break, it hasn’t escaped my notice that in the last couple of weeks there have been 2 sets of awards launched – both relating to allergies and both looking at vastly different aspects of the allergy world. One is celebrating people who support allergy-sufferers, be it in a professional capacity or a more supporting role at home, and the other looking for restaurants who go that extra mile to make meals out an option when living with food allergies. The one thing they’ve got in common is that they’re both looking to give recognition to those individuals and organisations whose tireless work makes a difference to those living with allergies and to celebrate their efforts. To make sure I focus equally on both awards as they are both incredibly important in my opinion, today’s post will look at just one set of awards and the other I’ll discuss in my next blog post.

Allergy UK Hero Awards – this year marks 25 years since Allergy UK came into being as a national charity that is now thought to support around 21 million allergy sufferers across the UK. Not only do they provide a comprehensive support network including a dedicated help line and on-line forum, but they also endeavour to educate those health professionals who work with patients living with allergic conditions. To help celebrate this anniversary in style, Allergy UK has asked for nominations for their Hero Awards, which will recognise the efforts of individuals to help, support and encourage friends, family members and any in their local community who are living with allergies.

There are 5 different award categories to choose between and nominations must be made before 1st July 2016:

Child Allergy Hero – a child or teenager (up to the age of 18) who has had the courage to help or has saved the life of an allergy sufferer
Family/Friend Allergy Hero – a family member or friend (over the age of 18) that has shown courage and commitment to their allergic child/parent/carer/sibling/other
Community Allergy Hero – an individual who has gone beyond the call of duty and has helped, improved or saved a life of someone with allergy in their community
Healthcare Professional Allergy Hero – a member of the healthcare profession who helps and manages the allergic patient’s condition and who provides on-going care with commitment, compassion and communication
Clinical Team Allergy Heroes – a team of clinicians who have shown care, compassion, communication and commitment to help their allergic patients

award I am delighted to see that the awards are open to just about anyone and not restricted to healthcare professionals. All too often the unsung heroes are the family members and friends who live with allergy sufferers and the ups and downs that life with allergies throws at them on a regular basis. To be able to give much-deserved recognition to these people is fantastic, although it’s good to also have the opportunity to nominate anyone from the medical community who has provided truly exceptional and perhaps personal care. I will be making my own nominations soon and would urge you to do the same if you feel there’s someone out there who has made a real difference to others living with allergies. The allergy world is often surprisingly small and tight-knit, so I’m looking forward to seeing if any familiar faces have been recognised for all that they do for those of us trying to survive the presence of allergies in our everyday lives.

To vote, please click on this link to the Allergy UK website. It’ll only take 10 minutes of your time and could give a real boost to an unsung allergy hero.

Allergy Awareness Week 2016

Because #livinginfear is not just about the allergies

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I wrote yesterday about the #livinginfear campaign and started thinking about what that really means to me. I quickly realised that #livinginfear is not what I want for M or, indeed, for G. It is so important that they are both aware of their allergies and that M, in particular, could suffer adverse reactions to the foods he eats. They must take on responsibility for their own health when away from home and have an understanding about what they eat and what they have to avoid. They need to know how to deal with mild reactions and how to communicate their needs to the people around them, especially when in new situations, or when Mike and I are not there to speak up on their behalf. After our experience with the sweet potato trials, they now know that there could be other, more serious reactions that M’s not experienced before and that they could be frightening. Most critically, I need to teach them how to respond calmly should those reactions occur.

However, the most important thing is this: that my children are still children and whilst living with a chronic illness has forced them both to grow up a little faster than their friends and peers, I don’t want them shouldering adult worries or concerns, or feeling weighed down with fears that may never be realised. Until the point when they reach their majority, I want my children to laugh, play and simply live each day as children, trusting that Mike and I will always be there supporting them, ready to catch them when they fall.

The truth about #livinginfear for us is that it is my burden to bear and is about more that just the potential for serious allergic reactions. My fear is not even about M possibly suffering from anaphylaxis one day as, although the prospect of facing that is daunting, I trust that my parental instincts and ability to stay calm under pressure would get me through that most difficult of experiences.

No, that weekend highlighted for me what my true and biggest fear about his allergies and his health really is: that I will not be believed…that I will become “that” parent…and that the health professionals involved in my child’s care will doubt what I say, thinking I’m causing a fuss about something that is simply not true. The years spent chasing a diagnosis despite everything the doctors were telling us have taken their toll on my self-belief. I second guess myself at every turn. I discuss and dissect and deliberate my every waking thought about M with Mike to check that I’m not going mad, that he, at least, understands where I’m coming from and that I’m not being unreasonable or over-reacting to the situation.

Nothing demonstrates that self-doubt more than the fact that I insisted we tried M on the sweet potato again the following day when Mike was there, just so he could see the reaction for himself and confirm that what I had seen, and M had experienced, was true. Despite my natural concerns that it could have been an anaphylactic reaction, I needed Mike to be an eye-witness to it too and I had our back-up plans in place, just in case his response was even worse that time round (fortunately it wasn’t). I didn’t want to put M through the terror and pain of the reaction again, what parent would, but I needed to be certain that I hadn’t imagined it to be more extreme than it actually was.

I know that my confidence has been shattered by the very people who should have been supporting me and my family every step along the way – the medical professionals we’ve encountered on our journey. I am no longer comfortable in trusting my gut instincts about M’s health, even though I have been proved right time after time after time; and that’s simply not acceptable.

Being a parent is a hard enough job when you have a happy, healthy child – there are no superheroes living in secret in my local community as far as I’m aware; but the burden quickly becomes overwhelming once you throw a chronic illness into the mix. I find myself not always being able to state my case clearly or argue M’s corner when it matters most and I lie awake worrying in the middle of the night that the treatment I’ve demanded may not be the best course of action, or whether there was anything I forgot to mention at the most recent appointment. I know myself to be a strong, intelligent woman and yet I find myself being instantly returned to my school days, with all the mixed emotions of being sent to see the Headmaster, the minute I find myself facing a consultant.

And I worry that G is getting lost in the chaos that is hospital stays and food allergies and medicines and diagnostic tests and the relentless need to monitor, record and report everything. As she approaches her SATs and the prospect of moving up to “big” school looms ever nearer, my firstborn is growing up fast and I wonder how our relationship will survive the inevitable traumas of her teenage years when my focus so often has to be on her younger brother. Time together is rare and incredibly precious and something we both need and enjoy because I’m fully aware that I’m not necessarily getting this parenting thing right.

So, raising awareness this week has to be not just with the general public, although that is undoubtedly critical to protect the allergy-sufferers around us, but within the medical community too. For most of us, you are our firefighters and the people we are forced to depend on in our darkest moments. We need you to be strong, focussed and the experts that we are not, BUT we also need you to be gentle, compassionate and understand that you are holding the future of our most precious possessions in your hands. Don’t dismiss our concerns, but believe that we know our children best and have an insight or opinion that is just as valid as your professional one. Don’t belittle our emotions, but be empathetic when they overcome us and we need a shoulder to cry on more than anything else in that moment. Be honest, but in the kindest way, knowing that your words have the power to break us when we least expect it. Most of all, understand that we are constantly #livinginfear about our children’s health and life, so they don’t have to.

Why #allergyawarenessweek is important

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This week is Allergy UK’s #allergyawarenessweek and their aim is to raise awareness of the serious, and sometimes severe, impact of allergies on everyday life. Their campaign #livinginfear has invited allergy sufferers to talk about the frightening side of allergies, not least of which are the statistics that show an astonishing lack of knowledge about how to deal with serious allergic reactions amongst the general public. Recent research carried out by Allergy UK shows that 44% of allergy sufferers in the UK are living in fear of a serious reaction, whilst 68% of the people surveyed wouldn’t know how to deal with a reaction; and this lack of public knowledge could be forcing sufferers into a life of fear and anxiety. This useful infographic published this week uses the acronym FEAR to educate us all on how to recognise, help and potentially save the life of someone struggling with a severe reaction:

Courtesy of Allergyuk.org

Whilst M’s allergies are extensive and challenging, I have always been extremely grateful that he has never suffered anaphylactic shock from anything he has eaten, although the question of whether he could experience one has floated at the back of my mind for quite some time. We were lucky enough to be able to bring home a training epi-pen after our visit to the Allergy UK annual conference in 2014, though other than a cursory look when it first came home, I have to confess it’s been gathering dust in a box on top of one of our kitchen cupboards since then. We’ve even gone as far as discussing, late at night, whether we should have an epi-pen on hand at home “just in case”, but I’m ashamed to admit that that is as far as we’ve got in actually doing something about it.

Courtesy of foodb.ca

However, less than a month ago that decision came back to haunt me and I learned unexpectedly just what the reality of the #livinginfear campaign could be like. We were trialling sweet potato with M, a previous favourite that we were desperately hoping would bring some much-needed variety to his meals. The first mouthful on that first Friday night had been eagerly received and much enjoyed by M and although the following day was a little more fraught on the toileting front than it had been for a long time, we hoped it was nothing more than a temporary blip to be overcome. We ploughed on with the food challenges and M had taken to waxing lyrical about how much he was looking forward to including sweet potato in his diet once again. He even asked how long it would be before he could enjoy a “whole baked potato” once again.

It was at the 3rd meal and the increase to 2 teaspoons of mashed sweet potato that things suddenly and rather dramatically went horribly wrong. Mike, rather typically, was out for the evening at a charity whisky-tasting event and it was just me and the children enjoying our evening meal at home. M tasted his mouthfuls of the mash before anything else and then got on with the rest of his dinner. He got no further than half-way through when he suddenly grabbed at his throat and started gulping down mouthfuls of his glass of rice milk. He complained that his tongue was stinging and itchy, his whole mouth was itching and it felt as if someone had grabbed his throat and was squeezing hard. Two glassfuls of milk later and a frantic phone-call to Mike about what was going on, things settled down and M was feeling a lot better.

I had spent those 20 minutes just about holding it all together, whilst running anxiously through all the possible scenarios in my head and trying to work out what I needed to do if things took a turn for the worse:

Option 1 – Jump into the car with both children, trying to keep as calm as possible and race to our local hospital, 20 minutes away and with no car parking options on site: I’d get there, but what if he stopped breathing in the car and I needed G to get involved, even if it was just by using my mobile to phone for back-up?
Option 2 – Dash off to one of several nearby friends who are also doctors and ask for their help: much quicker, but at least one of those was at the same event as Mike and who knew whether the others would be at home
Option 3 – Call 999 and wait anxiously for an ambulance to turn up, all the time acting as the proverbial duck (calm on the surface, but paddling furiously beneath the water): how long would it take for an ambulance to reach us? Could I keep both children calm at home as we waited? What would I do if M stopped breathing? What would I do with G if we needed to rush off to hospital?

We were lucky. The reaction passed, although the stinging pain in his mouth and throat and the sensation of his throat tightening returned at odd times over the next few days. Following a lengthy conversation with our GOSH dietitian, it seems likely that M actually suffered an oral allergy to sweet potato rather than full-blown anaphylaxis, though it doesn’t quite fit with the known causes and triggers of Oral Allergy Syndrome. If you are interested to learn more about living with OAS, then I highly recommend the blog Feeding my intolerant child, whose description of her son’s oral reaction to a simple fruit ice lolly whilst on holiday is definitely reminiscent of those frightening moments at home a few weeks ago.

Needless to say, sweet potato has been banished from M’s diet for the foreseeable future and we are now seeking a local allergist who can help advise us on dealing with any other more serious allergic reactions that M might experience as we continue along the food reintroduction road. Oh yes, and we’ll also be pleading to get him an epi-pen for our own peace of mind and for the sake of his well-being and I will make sure that we all know how to administer it correctly.

Allergy UK Annual Conference

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To say that mornings and I do not get along is something of an understatement, and early mornings are the worst. I am, without a shadow of a doubt, a genuine, bona fide, card-carrying night owl and so anyone who saw me out and about at 6.30am last Saturday, was probably left checking their watches and convinced that something extraordinary was going on. The occasion was Allergy UK‘s first annual conference, being held at St Thomas’ Hospital in London. I first heard about the event at the start of this year and had been excited about the prospect of finding out more about allergies from the experts attending and presenting at the conference. The day had been designed to address the needs of individuals and families dealing with allergies on a daily basis and consisted of speeches and workshops as well as open Q&A sessions held during the afternoon.

Professor Peter Howarth of Southampton General Hospital was the keynote speaker for the day. He opened the conference with a fascinating insight into the on-going and future research that is currently being carried out in the area of allergies and allergic responses. He talked about the recently well-discussed research into peanut allergies, which is looking at whether it is possible to “switch off” the allergic response through regular exposure to peanuts in known sufferers, and whether this approach could be applied to other allergies too.

I was also fascinated to learn from Professor Howarth about the link that appears to exist between Vitamin D and the allergic response. Studies carried out suggest that Vitamin D can help to reduce the allergic response, particularly in individuals suffering from asthma or urticaria and it is evident that much more research into this area could be extremely beneficial, although there is no funding available for this at the moment. This is definitely an area I will be keeping an eye on to see if it could be of benefit to M in the future.

Mike and I then attended 2 afternoon sessions, the first of which was a child allergy workshop and proved invaluable, not least because Dr Jo Walsh, who ran the session, explained clearly and concisely the difference between intolerances, IgE allergies and non-IgE allergies. Her excellent explanation simplified what is a complex and much-misunderstood area and would be an amazingly useful tool when trying to explain M’s food allergies to anyone who comes into contact with him. She also touched briefly on how to manage the risks to an allergic child out of the home and brought to our attention the NICE guidelines drawn up in 2011, that cover the diagnosis of food allergies and intolerances in children.

The second workshop was run by Dr Helen Brough and was aimed at looking at dealing with allergies with teenagers. Although this workshop promised a lot, I felt that it didn’t really deliver on our expectations. The time allowed was just too limited to even begin to touch on what is a complex situation and certainly didn’t really offer any practical tips on how to deal with your teenager and their approach to life with their allergies. She focussed a lot on the Adolescent allergy clinics they are beginning to introduce, but the time was spent discussing what the parents and teens in the room would like from such clinics, rather than on what is actually provided.

All in all, we were impressed with the day and would be keen to attend another one should Allergy UK decide to hold it again. There was lots of information available on the day, but I would recommend that the workshop sessions be extended in length as 45 minutes was just not long enough to spend in discussion on such an involving subject. I will be keeping my ear to the ground to see if Allergy UK run another conference next year and will let you know the minute I hear anything about it.

7 years to diagnosis

Searching for an answer