Tag Archives: anaphylactic shock

Big Youth Forum Meet-up

In the middle of October, a group of over 80 young people from across the country gathered at Great Ormond Street Hospital for the first ever national Young People’s Forum (YPF) meet-up. Organised by members of GOSH’s YPF, the event looked to provide an opportunity for discussion about the practical and emotional issues that impact young people when they are in hospital as well as running workshops teaching a variety of skills from basic first aid to how to run a successful national awareness campaign.

Never ones to miss a great opportunity, we checked the proposed date for the meet-up and signed both G and M up to be a part of the day as soon as we could. G has been a member of the GOSH YPF for over a year, whilst M had been counting down the days to his 11th birthday so that he could similarly join the group. He finally attended his first meeting earlier this year and was thrilled to be able to be a part of this inaugural event, especially when he revealed that they were hoping to invite a celebrity to take part in the event too. It proved to a real learning experience for them both as they were invited to take part in the planning for the day itself via conference calls, a life skill that I never imagined them learning before their careers kicked off. We sat around the kitchen table, discussing conference call etiquette, the need to keep your phone on mute until you actually wanted to speak and the importance of listening carefully to what the others involved had to say.

After weeks of careful planning, the day finally arrived and we made our way across London to GOSH bright and early on the Saturday morning, following the signs that had been chalked on the surrounding pavements to help the visiting youngsters find their way. Mike and I were excited to learn that their celebrity guest was comedian Alex Brooker, star of “The Last Leg” and himself a former GOSH patient. G and M were less impressed, neither knowing who he was and whilst M was initially quite disappointed that his own top pick, magician Dynamo, was not going to be there, he very much enjoyed the opening talk that Alex gave to the group of young people attending the Big meet-up.

From what they told us afterwards, the day just flew past and they were keen participants in every activity, including covering their arms with a selection of temporary tattoos recently designed by GOSH Arts with the help of a few members of the YPF. G decided to attend the First Aid workshop, where she learned the basics of CPR as well as how to deal with anaphylaxis and administer epi-pens. She was particularly delighted to learn this latter skill as it was something that she and M had requested be a part of the First Aid training given. M, on the other hand, opted for a workshop ran by consultant paediatric surgeon, Ross Fisher teaching practical presentation skills, which he has subsequently put to great use at school. All in all, G and M had a fantastic day and are already looking forward to next’s year national meet-up, which is being hosted jointly by the Nottingham and Derby YPFs.

Advertisements

Giraffe, food allergies & me

This restaurant chain has long been a favourite of ours, even before the days of M’s extreme restrictions, and was one of the very first that we ventured back to once we had successfully got 3 foods back into his diet in 2015. We’ve visited their restaurants in various locations across the UK – London, Bristol, Milton Keynes – and have unfailingly had great service and understanding about the risks surrounding food allergies. So I was disappointed recently to see a Twitter conversation where fellow allergy-sufferers had not had such a good experience and indeed where one had suffered a severe anaphylactic reaction when her request for no soy beans in her food had been ignored. tweet

Naturally, me being me, I couldn’t help but wade in with my size 8s, not just because of our previous encounters, but because of our most recent and excellent experience at the Giraffe restaurant in the Brunswick Centre. I was so impressed with the impeccable diligence taken in regards to safeguarding my children during our meal that I have been singing their praises far and wide and felt it was about time that I did the same here as well.

img_11141G, M and I had headed there for an early supper following a busy day in London. G had been at her 2nd YPF meeting at GOSH for the day, whilst M and I had walked many thousands of steps exploring the activities and displays on show to mark the 350th anniversary of the Great Fire of London. Once our day was done, we had just enough time to sit down for our dinner before heading off to catch our train home and wandered to the Brunswick Centre because of its proximity to GOSH. The Brunswick Centre hosts a number of different restaurants, most of which we have tried at one time or another over the years, but Giraffe is the one that we most commonly head back to as both children enjoy the food and it is one of the few that prepares rice for M to accompany his meal.

downloadDecisions made about what they’d like to eat, our waitress came to the table to take our order and this was when their attention to details become really apparent. I started by telling her that both children had allergies and she immediately disappeared to grab their allergen listing to run through their menu choices with me. I mentioned that M’s allergies in particular were complex and unlikely to fit the detail given in their book, but she advised me that she had to go through it because she would be asked about it as soon as the order went to the kitchen and that her neck would be on the line if she hadn’t taken that first step of checking it all out. We started with discussing what would be safe for M to eat and she was immediately able to offer brown rice, a grilled chicken breast and cucumber slices, a meal that would more than meet his needs and then we moved on to G.

G had decided she really wanted steak and chips for dinner and whilst there was no problem with preparing a safe steak, the chips were more of a problem. Our cheerful waitress said it was possible that the chips couldn’t be cooked gluten-free as it was dependent on whether the oil in the fryer had been changed since their lunch-time service or not. She immediately headed off to the kitchen to check the situation with the chef and came back to apologise that unfortunately the chips would be cross-contaminated and so we needed to pick something else. G was insistent that she didn’t want rice and I was struggling to spot an alternative as the potato wedges are also cooked in the fryer and so wouldn’t be safe. 20150408_181702However, our waitress came to the rescue and suggested that G had the crushed potatoes as, whilst the menu stated they included dairy, she could request that they be prepared with just a little oil instead. Situation saved!

It didn’t take too long for our plates of food to arrive at the table and we were delighted with the meals that were served. Despite all the hassle with getting G’s meal ordered, the steak and crushed potatoes that arrived looked delicious and she devoured the lot in fairly short order. M munched his way through his dish too and the second chicken breast that we asked for half-way through was prepared and served before he had managed to clear his plate. I really was incredibly impressed with their approach to preparing, cooking and serving allergy-friendly food and how hard they worked to ensure that we all had a meal we could enjoy and remain safe eating. I don’t know if this system is in place across the Giraffe chain, or if it is carried out as thoroughly as it was at the Brunswick Centre, but I’m certain that this is a restaurant we would happily choose to eat at again.

What we’ve learned from Rio 2016

2cfc75d26f32e6608791a5263d92e52b-rio-2016-olympic-logo-vectorBack in 2012, we spent hours glued to our TV screen as London hosted the Olympic and Paralympic games. We were lucky enough to be able to take the children to see some of the sports at both events and I reflected then on the need for EGID and food allergy heroes to help inspire G and M to be the very best they can be without letting their health issues get in the way of their dreams. Four years on and it’s the 2016 Olympics in the much more exotic, though sometimes equally wet, location of Rio and our family is just as absorbed in watching as much as we can, even with the added challenge of the time difference to negotiate. I have enjoyed seeing the children cheering their favourites on, but even more I have loved the emerging stories of some of those competitors which have really struck a resounding chord with me. We are not surprised by the tales of amazing fortitude that are revealed during the Paralympics, but these are individuals who have beaten the odds and are competing at the highest level against fellow athletes who do not have to battle against health challenges in the Olympics.

SMOCOur first inspirational athlete is British swimmer, Siobhan-Marie O’Connor, who won silver in the 200m individual medley at the Rio games. Not only did she win a silver medal, but she also broke the British record and all that whilst living with the effects of Ulcerative Colitis on her body. Siobhan-Marie was diagnosed with this inflammatory bowel disease following London 2012 and that diagnosis has resulted in the right medication and improved health helping her to succeed in her training and getting her to the Olympics this year. This has a particular resonance for me as UC is not dissimilar to M’s Eosinophilic Colitis as it causes inflammation to the colon, although with UC tiny ulcers develop on the lining of the rectum and the colon as well. To push her body beyond the pain and fatigue that I know will be plaguing her during flares in order to achieve excellence in her sport requires a determination and positivity that is truly remarkable.

AMHaving read about Siobhan-Marie’s success whilst living with Ulcerative Colitis, I thought I had found a potential candidate for a role model for both M and G; and then I saw an article about the Italian fencer, Aldo Montano, who is living with a severe and potentially life-threatening dairy allergy. Aldo was diagnosed with this allergy as a baby and has learned to adapt to his environment and to make food choices that will keep him healthy and keep anaphylaxis at bay. His lifestyle as an athlete does not, perhaps, easily lend itself to living with an allergy, but Aldo is clear that he does not let this allergy define him “…It is easy to get scared. I understand the fear of not trusting anyone and not wanting to eat anywhere other than at home. But I have had to figure it out — because my life choice is to compete and I have to travel…” I don’t know that either child will ever aspire to be Olympic fencing champions, but if they can adopt Aldo’s attitude that “…my secret is the same as Superman’s: stay away from kryptonite. If I stay clear of dairy, I am super strong. My secret is to stay away from it, and be positive…” then I am certain they will see success in their chosen field.

These are not the only amazing stories of these games, but they are both inspirations to our family in particular and there are so many other athletes who have overcome struggles that make their achievement in reaching Rio all the more sweet too such as British gold-medal diver, Chris Mears, who has beaten unbelievable problems to become a British record-maker in 2016. There have also been those who have suffered shocking accidents in pursuit of their dreams whilst there and are already on the road to recovery and focusing on their next goal; Dutch cyclist Van Vluten comes to mind. As for what we’ve learned from Rio 2016, well really it’s simple: that focus, determination and a desire to succeed can beat physical injury and serious health problems every time, so don’t let your chronic illness define who you are or dictate what you can become.

Because #livinginfear is not *just* about the allergies

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.

dsc02717However, 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.

willowtreeBeing 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

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

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

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.

epipenNeedless 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.