Things at Intolerant Gourmand HQ have been pretty hectic over the past few weeks! Illness, reactions, work deadlines - are all part of the norm!
BUT, Callum has also been busy in his own right!
No, I'm not sending my 3 year old out to work, honest gov!
A few weeks ago, Callum and I arranged to meet with Mel (from Le Coin de Mel), a fellow blogger and 3 of her 4 children. One of the many things we have in common is allergic children, and through the allergy and blogging worlds we’ve got to know each other well.
We also both support Allergy UK in their quest to improve the allergy situation in the UK.
Mel and I are going to be hosting competitions on our blogs to raise as much awareness as possible for Allergy UK, with you lovely lot benefiting with a lovely prize!
Yesterday, we had a lovely family day! We watched Wycombe Wonderers fight tooth and nail to win their match at Wembley - they really deserved to win!!
We then went out for dinner to Pizza Express, a firm favourite of ours as they are so clued up when it comes to allergies!
Sadly, our night out was cut short as Callum started to have a big reaction to a virus.
Yep, a virus!
It totally wiped him out in under 2hrs!
He was in extreme pain, his stomach was giving him crippling cramps, his temperature shot up to 39.2, and he became sluggish and difficult to wake up.
The picture shows him slumped in my arms just 40 minutes after symptoms started.
I ended up leaving the family behind, while I got him checked over by the Out of Hours team at the local community hospital.
As always, they were truly fab with him!
Normally, in a bright, loud waiting room, a 3 yr old would be causing havoc!
Not this time!
Nope, Callum was alternating between falling into an exhausted uncomfortable sleep, waking up screaming 'ow' and then falling asleep again/passing out!
Bloody horrible to witness!
The consultant who checked him over diagnosed a nasty virus, which he was reacting to.
It was also causing his lymph glands to swell, which was the reason for his pain!
The two in his tummy had swelled to the size of lemons, the 2 in his groin had become the size of golf balls. And a similar thing was happening in his arm pits, under his chin, and behind his ears!
All of this because of a bloody virus!
The poor kid!
I can't protect him from a virus like I can ingredients/ products!
This weekend saw the Allergy UK annual conference take place. It was a chance for parents, carers and sufferers of allergies to come together, meet professionals in the allergy arena, and seek invaluable support and advice.
It didn’t disappoint!!
The day started with an introduction from Professor Peter Howarth, who explained the background of Allergy UK, and their dedication to supporting the 20 million people in the UK alone who suffer with at least one allergy.
He explained that allergies/ allergic reactions are now being reported to affect almost all areas of the body, and traditionally, more than one site of the body often reacting. Allergy UK are working hard to try to promote ongoing improved understanding.
The message given to the audience was that all feedback is welcomed so that Allergy UK can continue to improve the allergy situation in the UK, and tailor it according to need.
Lindsey McManus then took over, and provided details on the current and future projects that Allergy UK are working on.
It was wonderful to hear of the important work, often behind the scenes, that Allergy UK are doing with their partners, and the anticipation felt by the attendees was palpable.
A fantastic presentation on ‘The Allergic March’ then followed with Dr Helen Brough, who totally captured the audience with her insight into the increase of allergic conditions, and the growing understanding of the relationship between eczema, food allergy and asthma.
It is understood that allergies affect more than 5% of children in the UK, and the rate of eczema is rising in line with this.
In addition, asthma is now one of the most common long term conditions.
Through increased understanding, it is known that food allergy exacerbates eczema, and eczema can cause food allergy. On top of this, food allergy, especially multiple food allergies is associated with an increased risk of asthma. And the more food allergies, the more likely the child will have asthma.
Dr Helen Brough then went on to explain about peanut allergy – which all attendees found extremely interesting following the recent fascinating LEAP study results that were released earlier on this year.
If children are exposed to high peanut dust content in the air at home, it is now known to have a high chance of a peanut allergy being present beyond 6-12 months of age. If a child has eczema as well, there is a much higher risk of a confirmed peanut allergy.
33-81% of children with moderate to severe eczema have immediate food allergies. It is understood that children with eczema may become allergic to food through the skin, and confirms the importance of maintaining good skin care and controlling the eczema successfully for these children.
An important point to note, especially for the NHS, is that of the cohort of susceptible children used in a recent study, allergic rhinitis increases asthma severity risk, to the point where there is a potential 3-fold risk of frequent wheezing attacks, and a 10 fold risk of frequent GP visits.
Crucially, if correct treatment of rhinitis is provided, there is a lower risk of asthma related A&E attendances, and therefore less hospitalisation. In the details provided by Dr Helen Brough, 47% of patients did not have an asthma related event, which reduced hospitalisation by 61%!!
This completely reinforces my ongoing beliefs that HCP’s require more training and better understanding of the true implications that eczema, asthma and most importantly allergies bring. As well as looking at the full picture and gaining a true medical history to build an accurate picture of the patient in front of them.
It was a truly fascinating start to what turned out to be a highly informative day!
Allergy support groups are beginning to pop up all over the place now, which is truly wonderful to see. Just a few years ago, things were very different, and it was even more of a struggle than it is now to gain important support through the long and difficult allergy journey we all experience when first exposed, often quite brutally, to the allergy world.
A key leader in this is Allergy UK!
Not only do they provide a wealth of information on their website, and provide support and guidance to allergy business such as ourselves, they also continually strive to achieve more and more support for allergy sufferers and their families, the ones who truly need support the most.
Last year, they hosted their very first annual conference, which was an outstanding success!
They are due to host their 2nd annual conference this weekend at St Thomas’ Hospital, in London. It is a ticketed event, which not surprisingly, has been fully booked for some time!
For anyone living with the challenges that allergies bring, be it a parent of a sufferer, or indeed a sufferer themselves, it provides a fantastic opportunity to talk to the experts, gain valuable information and seek comfort from others in the same situation.
Key speakers such as Professor Peter Howarth, Dr Carsten Flohr, Dr Isabel Skypala will be providing an insight into their work with allergies, and how allergy sufferers can work to improve their situation. They will be on hand for delegates to learn about the signs, symptoms and often complex nature of allergies, as well as impart the techniques they use with patients to manage allergies better.
There will also be interactive, practical workshops to gain further knowledge, and network with other sufferers.
It sounds fantastic doesn’t it!
Speakers who are leaders in the field of allergies, providing top tips and tricks of how to successfully manage and live with allergies, and then the chance to meet other people in the same situation as you, so you don’t feel as if you are alone in this difficult allergy journey.
A very productive and positive day for sure!
I am very fortunate to be attending, and will be writing a review after the event on my findings, which I will share here as soon as possible.
I’m really looking forward to this conference, as for me, it provides hope for the families struggling on a daily basis, and it offers them the opportunity to speak directly to the people who could really help them, where perhaps previously they have struggled to reach the support and guidance they so desperately seek!
It also shines some much needed light into what can be a dark desperate time, and to know that you are not alone on the journey, can sometimes be half the battle won!
Well done Allergy UK, and thank you for all that you do to support the people who need it most!
Last week was all about working hard to raise awareness of allergies! And boy did we do our best! ITV’s This Morning came for lunch, we wrote an article based on the facts released by Allergy UK on the shocking new statistics surrounding allergies, and then we also were interviewed on BBC 3 Counties Radio breakfast show at the weekend to describe what life is like with severe allergies and how we have learned to live with them fairly successfully. There were also other projects going on which we will give more details on soon!
This week, the realities of allergies have hit with a bang. It’s probably a combination of bringing up the whole journey of what we’ve been through, which is bloody tough at the best of times, and fighting the daily battle we go through!
Actually, scrap that, this week has broken my heart all over again in a number of ways!
The pollen level has been pretty high, which has meant that Callum has been really suffering. Not just with sneezing, coughing and runny nose, but also with his eczema.
My god, the eczema, it’s been awful!
Itchy, sore, hot, weeping….. you name it, the poor kid has had it over the past few days. And it’s had him up in the night in some severe discomfort.
Apart from his multitude of meds, there’s not much more I can do to help him, except ride out the storm.
It really hit home again this afternoon!
Chloe goes to swimming lessons, and Callum was there with me today.
He’s been complaining all afternoon about how itchy and sore his wrists have been.
Now, when you suffer with eczema, a stuffy, humid swimming pool is the last place you want to be. It aggravates the skin beyond belief and causes the eczema to feel worse than it is.
We were sat talking with a friend, when Callum decided to play hide and seek under the chairs. After a minute or two, I noticed he’d gone very quiet.
He was under the chair, itching his sore, eczema encrusted wrist against the carpet in a desperate plight to find some relief.
It of course made the situation much worse.
Cue blood, and lots of it.
I tried to stem the flow with tissue, but of course, with the damage done to the skin, there’s not a lot you can do!
Eventually the bleeding subsided, but then came the extreme itchy sensation as the skin tries to dry the blood.
It was at this point that Callum became very aware of the other people around him, particularly other small children like himself.
He desperately started to try and pull down his t-shirt sleeves, and then said:
‘Mummy I don’t want anyone to see, I don’t like it’
It was all I could do not to sob my heart out, and I’m not ashamed to admit that I did struggle a fair bit to get some control!
My poor precious boy.
He’s only 3 years old, he shouldn’t be having to worry about peer pressure, and the concern of how other people will react around him.
Sadly, because he’s witnessed so many people react badly around him, inquisitive and ill-informed people whilst out shopping or at baby groups mainly, he’s become acutely aware of how people react to someone who doesn’t always look ‘normal’.
I can only protect him for so long. Soon he will be going to school, and will have to face this on a daily basis, and I can’t begin to tell you how much this breaks my heart!
I just hope and pray that people will be kind and not judge, and maybe ask him what he suffers with, and provide him with the empathy and awareness that he and so many others deserve!
It seems quite fitting that Callum has had an allergy review with his consultant during Allergy Awareness Week! Due to the severity of Callum’s allergies, he is seen at least once every 4 months to ensure he remains stable, or at least as stable as he can be given his situation.
Callum’s consultant always does a very thorough review, especially as Callum has to follow such a restricted diet – we need to ensure his bloods are always at the right levels, and that he is sustaining calcium and vitamin levels sufficiently.
This review went quite well. It was a follow on from September, when Callum had repeat SPT and RAST testing done. The exclusion diet has meant that Callum appears healthier, and his skin, whilst still trying to remove stubborn eczema patches, is on the whole the best it has ever been, and is relatively clear currently.
There are some lymph glands that have been raised continuously for the past 6 months, which are being closely watched, and may require a blood test in the not too distant future to check all is as it should be. But, for now, the consultant is happy to watch and wait.
The best result of the review, Callum has finally started to put more weight on, and has even grown 1cm! It may not seem like much, but to us, it’s a sign that we’re doing something right, that his body is happier, and that we are beginning to win the battle against his allergies.
The journey is by no means over though, and we still have a very long way to go to continue to keep him safe and well.
I am fully aware of how fortunate we are to have this level of care, and know how ridiculously hard it is for others in the country to get this.
It’s not always been like this for us, and that’s why I am truly grateful things finally changed for Callum for the better. When his journey started, we battled for 16 months to get listened to before finally being referred to his consultant.
16 months of at least weekly attendances to hospital, including emergency admittances, or to eczema clinic, to be fobbed off with:
‘oh it’s just baby eczema, it will get better eventually’
When you’re a mum, desperately worried about your precious little bundle, watching their skin get worse and worse, battling infection after infection, witnessing extreme allergic reactions including struggling to breathe, and not knowing how to make it better, it’s quite literally soul destroying!
It really is!
And the fear, the fear of not seeing any light at the end of the tunnel, and wondering if this is how it will always be!
That’s why Allergy Awareness Week is so important, not just for allergy sufferers, but also for the medical profession.
It reminds them that allergies need to be taken seriously!
It makes them aware that many more people are now suffering with allergies, and need the right diagnosis to help them!
It shows the severity of the situation, and the burden that is now being placed on secondary care as more and more people resort to hospital admissions to seek help, often in an emergency!
An allergy review can be interpreted in many ways:
This week has the power to do all of the above, a chance to bring allergies right up to the top of the list of things to do, and to educate on what to be aware of.
It’s a chance to make a real change!
This week is the start of ‘Allergy Awareness Week’, an important time in the calendar for all businesses and charities focused around allergies, but especially important for allergy sufferers for people such as Callum.
It’s a time when crucial information on how to live with allergies, and what to do if an allergic reaction occurs, is brought to the fore, and people are reminded of the very real difficulties faced by sufferers.
Most importantly, it can teach many people how to save a life!
Sounds dramatic maybe, but would you know how to detect a severe reaction, and most importantly would you know what to do to help the person reacting?
Click here for signs and symptoms to look out for!
An article released today by Allergy UK, provides the hard hitting facts and realities of allergies at present, and the ‘hidden’ epidemic that is being realised.
Data collated by Allergy UK suggests that:
‘44% (almost half) of allergy sufferers live in daily fear of a reaction’
As an allergy mum, I can totally relate to this. Whenever Callum isn’t in my care, I have to push down the constant fear and unease that I feel on a daily basis, even if he is in the care of his wonderful and perfectly capable child minder. A reaction whether mild, or severe, can occur at literally any time, so I guess you could say it is the fear of the unknown!
Allergy UK have also found that:
‘66% of UK adults admit they don’t know how to administer an adrenaline auto-injector pen’
That’s more than half of the adult population, unsure of how to deal with a severe reaction! Quite a worrying prospect for someone with an allergy, and hoping that if the worst were to happen, somebody near to them would be able to assist during their time of need, or rather crisis.
Doesn’t instil much confidence does it!
On top of this, latest statistics from NHS England suggest:
‘hospital admissions in England for allergic reactions are soaring to more than 20,000 each year, with over 60% (12,560) of these being emergencies’
This is a very worrying statistic. Year on year, the prevalence of allergies is increasing at a very fast rate, and yet awareness of allergies, and diagnosis remain dire. Our own personal experience with Callum has shown us this. It took 16 months, and multiple hospital admissions, including 3 emergency situations before we were finally listened to, and the medical profession began to address his allergy issues.
This is what spurred the birth of Intolerant Gourmand, and the determination to change the allergy world so that others don’t suffer the same way Callum did.
Let me put all of this into context!
What would happen if Callum had a severe allergic reaction? It makes my blood run cold just typing that sentence, particularly as we have sadly experienced this a number of times! Each of them being a truly frightening experience.
What if that severe allergic reaction resulted in anaphylaxis? And I, Jon, or his childminder were not immediately available?
In all seriousness, I wouldn’t allow this sort of situation to ever happen, but it makes you think twice about the realities faced with severe allergies.
A severe allergic response resulting in anaphylaxis is a very real possibility with Callum, it’s happened before.
His serious food triggers, the ones he was prescribed his adrenaline autoinjector pen for, are dairy, nut, tomato and strawberry. He also has other severe food and environmental allergies, but they are not classified as quite so serious.
These are all simple, every day ingredients that he can easily be exposed to at all times.
How about this example from last summer:
Just one lick of an ice cream, containing just 20% strawberry, 10 seconds of time, resulted in a reaction so severe his face swelled, his eyes became slits, his throat started to close, and his breathing became wheezy and laboured.
Callum has a confirmed asthma diagnosis, which made the situation even more frightening.
Less than 10 seconds.
The time it takes to blink twice.
Would you know what to do?
Would you know how to administer an epi pen that would quite literally save his life, or at least give him a fighting chance?
Sobering isn’t it!
That is life for us!
Every single day, not knowing when the next reaction will be!
And if it happens, if he will survive it!
Or whether people will know what to do if the worst happens!
Callum’s childminder has just completed a First Aid Training course, and I was very pleasantly surprised to hear that as part of the course, they now include adrenaline autoinjector pen training. It gives me a lot of reassurance that not only Callum, but other children will be safer because of this, and the knowledge that is being taught.
This is why ‘Allergy Awareness Week’ and the work of Allergy UK, and all the other allergy charities and businesses like us is so very important. Not only does it educate and provide much needed information, it provides hope to the 1000’s of allergy sufferers out there, like Callum, who hope and pray for a cure, or at the very least are surrounded by people who know how to respond to a severe reaction!
The more education, the safer the allergy world will be!
How will you help to save an allergy sufferers life?
Do allergies define you? Are you #livinginfear of when a reaction might happen? Do you have a good support group around you, helping, guiding, and keeping you smiling?
Callum wants you to know he feels safe because of what we do, helping educate those around him, supporting those who need it most!
Allergy Awareness Week is running all this week, look out for important information that may just help you or someone you know!