There are career defining moments, times that really make you appreciate what you have achieved and how far you’ve come. Last weekend was one of those moments for me.
I had the privilege and honour of being invited to present at the BSACI (British Society for Allergy & Clinical Immunology) annual meeting in Telford.
It is a pinnacle event in the year, seen as the flagship event for those in the allergy world, bringing leading Consultants, GPs, Dieticians, Paediatricians, and more from around the world. All of the sessions that take place over the 3 day event are of the highest quality, sharing the latest data from pioneering studies.
I am well used to presenting and cooking live, but this was a little different due to the audience. I’m truly humbled and thankful to have been invited and given such an incredible platform to share Callum’s journey in the hope it helps others.
I presented alongside 2 inspirational ladies (Tracey Dunn and Sue Clarke) and all of us had the same message – that inclusion NOT exclusion is key!
My presentation was very well received, with some amazing feedback given by those who listened. People came up to me to say they’d heard about the presentation and wished they’d been there.
So, I thought I’d share it here, in the hope that it continues to help others!
I’d love to hear what you think too, so please do let me know. I have 3 other presenting dates coming up this year, and I shall use the feedback to help shape my talks.
My son Callum presented with baby eczema at just weeks old, by 8 weeks he had his first severe allergic reaction, with what is now believed to be dairy transferring through my breastmilk. Going dairy and then soya free didn’t improve the situation, and he continued to suffer with reactions, with 3 very severe reactions which saw him hospitalised.
Finally, at 16 months old he was allergy tested, although his skin was in such a bad way, the test had to be done on his back. At this point, we learned that he had a total of 28 severe allergies (including all forms of dairy, nut, tree nut, strawberry, tomato, wheat, citrus, egg, peppers, dustmites, cats, dogs, tree pollen, grass pollen, OAS etc), which explained why even though I’d excluded dairy and soya from my diet it hadn’t made much difference and he was still suffering. It meant that our everyday lives would change forever, and we had to adapt to a whole new way of life, new way of shopping, new way of cooking, and new way of keeping Callum safe whenever we went out.
Simple tasks like food shopping took a lot longer in the beginning as I had to learn what was safe, what wasn’t and learn the minefield of cross-contamination. A little slip up would result in a reaction and very poorly Callum which could take several weeks to recover from. It wasn’t just the immediate reaction, it would offset Callum’s eczema, resulting in infection and more often than not several courses of antibiotics to take control back.
As we got better at food elimination and his skin and body calmed, we noticed a big difference in Callum. He was so pale before diagnosis he was almost translucent, and with huge purple shiners. Now, you couldn’t tell that he lives with so many allergies on a daily basis. His skin as a lovely glow, and gone are the shiners.
This was Callum at 8 weeks old, to show the extent of his reaction. He was so swollen, and covered in pus and raw skin from head to foot. In the first photo you can see that I was unable to breastfeed him unless I wrapped him in a towel, otherwise he would slip off my arm – he was so slick due to the volume of pus his poor body was excreting.
We have taught Callum that it is so very important to carry his medicine with him at ALL times, and to never get complacent. The level of his allergies dictate that you just never know when the next reaction might occur, and because of this, we always need to be prepared!
This is quite timely as Callum has just had his yearly testing this week. From a Consultant or GP perspective, it’s a patient in clinic. For us, it’s a whole different ball game. Callum uses cetirizine to control his symptoms, particularly extreme sneezing, itchiness from eczema and relieving of other symptoms. We have to stop giving it to him 1 week before SPTs so that it doesn’t cause a potential false negative. This causes a knockon effect which takes anything up to 2 weeks to resolve, and is something we just have to deal with, or as Callum tells us ‘he has to suck it up’ – anyone who has met him will tell you he’s quite the character, and a brave and resilient child!
Imagine, a week of extreme itching, feeling as if your skin is on fire with no respite. Then imagine having to get dressed every day, and then undressed.
Clothes hurt, the seams of socks hurt, you get the picture!
Imagine sneezing so much you give yourself a nose bleed at times, or a ridiculously sore throat!
Imagine trying desperately hard not to itch your skin, but failing miserably and breaking the skin, then worrying it might get infected.
These are just some of the things Callum has to deal with in the run up to the testing.
He’s old enough now to understand what’s coming, fearful of the pain the SPTs will give him and the knowledge that a reaction will happen, but it’s on purpose so he has to ‘deal with it’.
The blood tests don’t phase him, he actually likes to watch as the blood is taken, fascinated to see his blood make it’s way down the pipe to the vial – told you this kid was something else!
For us, testing, well it’s a necessary evil, and if like we found out this year, sometimes things can improve slightly – we’re considering a trial of baked egg in hospital, which is something we never thought would happen!
When Callum reacts, he goes through a classic 3 day phase – extreme discomfort and tiredness, volatile behaviour, then a sense of calm as ‘normality’ resumes. This also happens when he goes through SPTs. It’s a challenging week!
It’s made all the tougher because Callum is now at school, so he has to cope with the school day on top of everything else. I’ll come back to this a little later on!
This is often the biggest challenge for people learning to live with allergies. It’s not so easy to go shopping and just pick things off the shelf any more. You have to learn to read labels and get to know what the alternative names for ingredients are, particularly when it comes to dairy – casein,, whey, milk protein, powder, lactose, ghee etc)
Since the top14 allergens came into force in December 2014 it has certainly helped when buying products and especially when eating out. There is much more understanding about the dangers of severe allergies and why it’s so important to declare ingredients used and the effect they can have when not disclosed. Amy May being a classic example of this most recently in the press.
You learn to get creative when cooking, and this is what I’m best known for through my website and the clients I work with – creating totally safe food that still looks and tastes good!
I remember the days when we used to just walk out the door and go out for the day – oh if only life was still this simple.
I’m a huge advocate of positive thinking when it comes to allergies, and my approach is always to live life to the fullest and not let allergies define you, something I’ve certainly taught Callum to do as those who have met him will testify.
But, it’s still a challenge when you go out, especially if it involved a meal time. I often call ahead to find out restaurant policy – if they are cook chill, then we wont even bother as the food is all premade and chances are there won’t be safe options for Callum. If it’s cook fresh, then I ask to go off menu and suggest a viable option and more than 90% of the time, people are more than happy to accommodate. It’s the positivity that helps – if I were to list all the allergies Callum has, most people would look a bunny in headlights thinking ‘I’m not doing that!’, but by giving them a solution, they are quite happy to do what they can to help!
If there’s no way of overcoming it, I will ensure that we bring safe food for Callum so that he never misses out.
It’s the same if I’m working away – today being a prime example!! I set everything up in the slow cooker before I left this morning so my husband doesn’t have to worry!
All of the comments you see on the screen are things I have heard Callum say over the years, and it’s not pleasant to read.
You see, allergies aren’t just about the symptoms suffered. It goes far deeper than that, it’s also about the emotional and mental aspect too. Children like Callum regularly appear to have similar traits to aspergers or autism, as they struggle to cope with what they’ve gone through and the often horrific reactions they have survived.
A very good friend of mine has just come back from the USA. She has suffered with severe allergies from a very young age, and always carries her medi kit with her and triple checks ingredients when eating out. Whilst in the USA she ate out, checked the ingredients more than once, got reassurance each time, and yet suffered a near fatal reaction – 6 epi pens later, they still hadn’t stabilised her, and almost lost her! As an adult, able to process things far better than a child, she is struggling to come to terms with what has happened.
She describes the ongoing flashbacks and nightmares as a black blanket that is smothering her, leaving her struggling to breath and gluing her nose and mouth shut so she can’t get air. How a child could explain this is almost impossible to fathom!
This is why inclusion is so very important!
They already feel so different, and experience things most other children will never even be aware of!
Everything we do as a family, is with Callum in mind. We won’t do it if he can’t.
It’s the same with school – they ensure he can do everything they have planned, and if he can’t, they’ll ask me for a solution so he doesn’t miss out!
We always have taken an open and honest approach with Callum. He fully understands the severity of his allergies, and the symptoms they can cause.
Whenever we go out, he knows to pick up his medi kit and take it with him. He is also acutely aware of the medicines within it, what they are all for, when and how to use them.
As part of my business, I coach, teach and train about how to successfully live with allergies and for me I find this so so important.
It’s truly NOT about banning allergens, it’s not sensible or feasible. The school have banned nuts and strawberries, but that was to make things easier for them, not because we requested it.
I’m a big believer of managing your allergies, not expecting others to do it for you.
If we were to take Callum on a train, plane, bus, tube (and we do!) they all contain everything he is allergic to, and more. It’s about teaching him the skills to keep himself safe – gloves in winter, pulling down his sleeve to hold onto when in the tube, antibac wiping when sitting on the train or plane and not being afraid for people to see you doing it. Being empowered to say ‘I have allergies’ and knowing it’s ok to do that!
Having run a blog for 2 years prior to Callum starting school, I was very aware of the potential issues that could occur. My philosophy is to empower, not place blame, so once the school that Callum was to attend was confirmed, I worked with them to help them be fully ready – things to look out for, cross contamination, how to keep the classroom clean and contamination free, signs of when Callum is reacting, how to include him in everything (cooking in class, painting, working on the allotment etc)
I also wrote a letter for all the parents in F2 for the start of term – it was handed out as part of the welcome pack from the school and written as if from Callum, explaining his allergies and what happens to him in simple terms so that they could prepare their children. It helped so much, and many parents came up to us to thank us for helping educate on a simple, effective and non preachy approach.
Callum now has a year group that is extremely protective of him, aware of what he can and can’t eat at birthday parties, and do what they can to include him.
He feels safe, secure and happy, and we can’t ask for any more than that as he is leading as normal a life as possible.
I have worked closely with the school kitchen as well, pulling apart the kitchen ingredients to determine what was and wasn’t safe. I trust them to make Callum a hot lunch every day, that is the same or as close to the same as what the rest of the school has, which he loves. Again, it comes down to inclusion, and ‘feeling the same’.
I hope that this presentation helps to show that allergies don't have to hold you back. I of course completely understand that initial fear and worry when diagnosed, but it's so important to ensure that anxiety doesn't take over.
Once you learn how to live with allergies, you CAN live as normal a life as possible, safely and fully!