May your Christmas be filled with love and laughter; times of happiness and of reflection; family and friends…
…and may 2015 be a year that brings new hope, understanding and peace.
It’s that time of year when months, weeks or maybe just days of frantic planning come to fruition and families across the UK enjoy a week or two away from it all. Whether it’s time in the sun, travels to far-flung shores or even just a few days experiencing something new in the UK, most of us wouldn’t think much beyond making travel arrangements, booking somewhere to lay our heads and throwing the essentials into a bag. For years my saving grace was the thought that, insulin aside, if I had forgotten anything else even vaguely important, as long as we had money, we could pop to the shops to find a replacement.
Once you have children with chronic illnesses or food allergies, everything suddenly becomes that tiny bit more difficult. No longer can you risk forgetting any part of the equipment or medicines you need to get your child through each day. No longer can you assume that you will be able to get hold of the gluten-, dairy- or any other allergen-free food that your child needs to remain healthy. And you have to consider what you would do if any one of your “what if” worst case scenarios was to actually happen. With all of these things to complicate what should be a fun and relaxing time away from home, it’s no wonder that many families living with chronic illness choose to holiday at home, or within reasonable spitting distance, so that many of those concerns are alleviated.
Whether you consider it courageous or complete and utter madness, we’ve never been a family to stay close to home. Mike and I both love travelling and have chosen to nuture a similar passion and willingness to explore the unknown in our children. Part of that has no doubt been fuelled by our want to go back to Canada regularly to visit family and friends and over the last couple of years we’ve developed strategies to help us cope with travelling with M. I carry doctors letters and copy prescriptions for both M and me in with our passports and last year discovered that we’re entitled to ask for additional luggage allowance to carry all of M’s medicines and foods with us free of charge.
With all this in mind, and our plans for this year’s holiday well under way, I contacted our travel company and airline to discuss our needs. This year is our “holiday of a lifetime” as we are going to Florida to enjoy all things Disney and Universal before spending a relaxing week on the beach in St Petersburg and I want it to be as straightforward as it possibly can be given the challenges of EGID and multiple food allergies. Planning for this trip started months ago and I had drawn up a list of things I wanted to find out to make our holiday as stress-free as possible. My first set of questions was all to do with our flight out and I contacted the Virgin Atlantic Special Assistance team to talk over our needs. I was quickly reassured that, as before, we could carry all of M’s medicines and foods in an extra suitcase and was advised to make sure I had copy prescriptions and doctors letters with me to make our security experience as smooth as possible. They’ve also added a note to M’s booking to make it clear to all staff that we are entitled to carry extra luggage free of charge for medical reasons. A big tick there that there will be no problems carrying M’s medical supplies.
Next the small matter of M’s in-flight meal. I couldn’t imagine that any of the special meals on offer were going to avoid the wide range of allergens we needed them to, but again the Special Assistance team were able to help. I sent an email with a full list of the foods M can’t eat and then followed it up with a phone-call. The lady I spoke to agreed that it would be difficult to accommodate him with their standard meals, but asked what, if anything, would suit him.
“Plain chicken and rice,” said I, “with no butter or sauces added and a few vegetables on the side.”
“Leave it with me,” she said.
A couple of hours later an email popped into my inbox. “I’ve spoken to the catering staff and they will make plain chicken and rice as requested for M for the flight. I’ve passed on a complete list of his allergies for their reference, so please let us know if anything changes between now and your flight. I’ve added all this information to your booking.” I was amazed at just how easy adapting a meal to suit M was, but because I’m something of a worrier, I gave VA a quick call last week to confirm everything was okay for the meals. “Yes absolutely.” said the man I spoke to this time round. “I can see this meal marked on M’s booking and this list of foods to avoid. Is that all correct?” They’d even had the sense to annotate the return flight too, so I can be confident that M will be eating something safe in both directions. They also suggested we carry a supply of safe snacks in our hand luggage (another extra bag could be carried free of charge if it was necessary), so that M won’t go hungry during the flights.
The final element was our booking in the V-room airport lounge before we make our flight. A complete breakfast menu is available to us, but scanning my eyes down the list of food, I could see that there was little on there that would be safe for either child, though G had a few more options than M. This time I contacted Virgin Holidays as they run the airport lounges and asked what our options were. I was given a list of foods that are M-friendly and advised to ask to speak to the chef when we arrive at the lounge to discuss what M would like for his breakfast. They stock gluten-free foods as a matter of course and whilst they had soya milk as an alternative for dairy, this wouldn’t suit M. Once again I was told that this wasn’t a problem and was hugely impressed to receive a follow-up email telling me that the chef of the V-room had contacted their suppliers and would get in some rice milk just for M on the day of our flight. What more could an allergy-Mummy ask for?
Of course, there are no guarantees that any of this will work out as planned and I am cautious enough to be taking supplies sufficient to meet our needs as we make the trip to the US. I will, naturally, let you all know how it goes once we’ve made our flight!
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.
One of the hardest parts of M’s EGID journey is that he no longer feels like a normal child and is massively aware that he stands out from the crowd. Every day is filled with numerous medicines to be taken, carefully planned meals, aches, pains and a constant awareness of needing to make sure he gets to the toilet on time. As I’ve alluded to before, M is incredibly self-conscious about his condition and spends a great deal of time worrying that he will be picked on or bullied because of his illness and restricted diet. He has a tendency to isolate himself in group situations with his peers, though he will spend hours chatting to any available adult who’s prepared to listen.
We refuse to let his chronic illness get in the way of his life any more than is necessary, so he goes to school, takes part in after-school clubs and has friends home for tea just like all his friends. However, every new thing he participates in has to be carefully assessed and I spend a lot of time talking to teachers and organisers about M, his condition and the consequences they might have to deal with. We have been lucky that we have never come across anyone who isn’t prepared to work with M’s needs and accommodate them so that he can take part.
A recent week has been a perfect example of how wonderful it can be when M can feel like part of the crowd and not stand out for being so different.
Both G and M have been attending our local Stagecoach theatre school for a number of years and enjoy performing. They were lucky enough to be part of the 25th Anniversary celebrations for Stagecoach back in March and took part in a massive performance of CATS at the Birmingham Indoor Arena. We are also avid theatre-goers and love nothing more than seeing a musical on stage. When I heard that the Youth Music Theatre Academy (YMTA) were running a drama workshop for a week this summer and that they were going to be learning and performing routines from a hit West-end musical, I knew I had to sign the 2 of them up.
G and M have been excited about this opportunity for weeks and, since the start of the summer holidays, have been counting down the days until the course began. By some strange quirk of fate, Mike and I had booked tickets to take them to see this show on tour the weekend before the workshop began, long before we even knew about the course and it was the perfect introduction to the week. What made the performance even more special was that some of the cast members were coming out to teach on the course during the week and we spent the interval musing over who the kids might get to meet.
The only grey cloud on the horizon was the difficult time M was going through with his health in the lead up to the course. By the Thursday of the week before, it was evident that he wasn’t going to find the week easy and I needed to be on site with him for those “just in case” moments that might happen. Fortunately, Jo (the course organiser) had no issue with my presence and welcomed me and M on board with an excitement that meant a lot. When you have a child who’s chronically ill, then it’s these little acts of inclusion that make all the difference.
I spent the week sitting quietly with my trusty laptop, tablet, mobile phone and books in a corner tucked away from view, armed with snacks, coffee and anything and everything M might need. The children knew I was there as a security blanket for them both, but I wasn’t an ever-present reminder that there was anything wrong, especially to those who were meeting M for the first time. He sang, danced and acted his heart out, learning new routines, perfecting familiar songs and most of all, having an amazing and fun time. We managed his medicine and his toileting with the minimum of fuss and I doubt that any of the other children really realised that there was anything different about him.
The Friday performance to the parents was fantastic and a real testament to the talents of those who had happily given of their time that week to teach the youngsters some new skills. We were amazed by how much had been achieved in such a short amount of time. My thanks have to go to Jo, Rosie, Joe, Holly and Zach, who didn’t let M’s EGID phase them, but supported and encouraged him every step of the way. He had an amazing time and can’t wait for the next workshop to be arranged! Best of all, M had a week where his health didn’t stop him from taking part and he was able to feel and be as normal as any other child who was there.
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