9

Today broke my heart…

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!

2

Allergy reviews – just how important are they?

Allergy review - Apr15bIt 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.

Happy days!!

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!

Allergy review - Apr15Words cannot do justice to how flipping hard it is to feel so powerless and utterly terrified of what the future may hold.

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:

  • A check up with someone from the medical profession
  • A roundup of the allergies you suffer from
  • An insight into what you know about allergies
  • A chance to update information on allergies either on a personal level or through training

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!

1

The day ‘This Morning’ came for lunch…

This week is Allergy Awareness Week, a time to shout out about allergies, and what it is like to live with them on a daily basis. What happens when you have a diagnosis of allergies, how you learn to live with them, how to keep yourself and others affected by allergies protected, and what to do when a severe allergic reaction results in anaphylaxis.

Allergy UK are currently running the #livinginfear campaign. It provides all the information you need to help anyone with allergies, including what to do if you spot the tell-tale signs of a severe reaction. Check out this infographic for some fantastic information:

AAW15poster 

 But did you know that it doesn’t stop there!

Allergy businesses and charities up and down the country are doing everything in their power to bring allergies to the fore. We are trying to get the message about allergies and how serious they really are to be truly understood.

Many things are helping!

The recent change in legislation back in December 2014, has resulted in all premises selling food, whether freshly made or packaged, to provide details of any of the top 14 allergens used. It is still early days, and there has been some resistance, but there are signs that eating out with allergies is improving.

The medical profession is beginning to realise the prevalence of allergies and how many more people are now presenting with serious allergic reactions in hospital – 20,000 attendances last year alone, with over 12,500 of those being an emergency situation!

Intolerant Gourmand are also doing what they can to increase understanding of allergies!

Aside from this blog, which provides lots of tips, tricks, things to look out for, allergy safe recipes, and more, we also work with a number of organisations to increase awareness of allergies, and provide better tools to teach people the importance of understanding the severity of them, and also how to live safely with allergies.

Callum’s story has featured in the press on 2 separate occasions, to raise awareness of what happens when allergies are left undiagnosed.

We have also been talking to ITV‘s ‘This Morning’ about the journey Callum has had to get him better!

We had the lovely Lynsey Evans (Features Editor) at our house on Monday, filming a VT of Callum and how he lives with multiple severe allergies on a daily basis. Callum was an absolute super star, showing Lynsey his special (huge) medicine cabinet, filled with all the drugs that keep him safe and well on a daily basis. He explained, unaided, in his very own unique way, how to use an epi-pen and also his inhalers that ‘keep me better if I’m really really poorly!’

He also helped to cook an allergy safe chicken noodle soup, and banana bread, for lunch, and was very proud to show them off to Lynsey!

I was so very proud of him. He showed his understanding of his situation, and educated at the same time, in the most adorable way!

There was a particular comment from Lynsey that really stuck with me, she mentioned that in spite of his constant daily battle to stay safe, and my continuing almost crippling fear of him having a severe reaction, he is totally unaware of my fear. She commented on how he is so happy, chilled out, and confident in his routines and knows that he is safe and protected.

That was truly wonderful to hear!

It’s my job to protect him with every fibre of my being, but to have acknowledged that my nightmare situation, my absolute fear, is not felt by him, means I must be doing something right!

We were due to be on the This Morning sofa with Philip Schofield and Amanda Holden today, but unfortunately some pretty high profile stories broke in the last 24hrs, which meant their schedule had to change and be altered.

But fear not!

We have been advised it will happen, we’re just not sure yet of a date! So, we will keep you posted!

Callum was very excited about going on a train to London to ‘see that man there on the telly, and talk to him about me being poorly!’.

He meant talking to Philip Scholfield!

He was in awe of the fact that he was a real life person, and not someone who lives ‘in’ the TV!

We very much look forward to meeting with you again soon ‘This Morning’, and in the meantime, thank you for a fabulous and fun day on Monday!

We got to show that living with severe allergies isn’t all doom and gloom, and that you can still get to have lots of fun too! ITV & Callum

3

Allergy Awareness Week – The ‘hidden’ epidemic…

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.

10 seconds.

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.

Click here for details on how to use an adrenaline autoinjector pen correctly.

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?

1

Not quite #silentsunday – 19th April 2015

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 does! 


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! 

0

Easter holidays, allergies and colds…

So, we’ve reached the other side of the Easter Holidays, or at least we have in our neck of the woods!

How did it go for you?

We had high expectations for a fun filled couple of weeks, with family day trips here and there, arts and crafts, visiting friends and family, and more!

Sounds lovely, right?

Yep, so the law of sod reared its ugly head, and decided to shake things up a bit…. Well quite a lot actually!!

The day after school broke up, Chloe started to complain about a sore throat. Within 48hrs she was croupy and feeling utterly lousy. So the first 3 days of the holiday were a write off as she pretty much slept the whole time on the sofa, or moped about the house feeling understandably sorry for herself.

easter 2Once she started to feel a bit more human, we took a trip to Hastings for the day to see Gram, and visited the Blue Reef Aquarium which was a BIG hit! I thoroughly recommend it for young children. There’s a lot of different varieties of fish to see, with interactive talks on specific fish as well. Chloe and Callum had a great time!

The next day, we ventured out again, this time to Warwick Castle. You can’t beat fresh air to help make you feel better, along with lots of walking, and history!

easter 3I can’t recommend Warwick Castle enough! It’s a fantastic day out, with so much to see and do, we could easily have come back for a second day and would have had just as much fun! After a bit of reassurance for Chloe, we did the tour of the dungeons, which were fab. Jon even had his head ‘chopped off’ at one point, which Chloe and Callum weren’t too sure of! There were princess tales in one of the towers, walks to the top of other towers, the trebuchet, jousting, horrible histories, the time tower, and more!

There was only one thing I could find fault with…… the food! We struggled to find ‘safe’ food for Callum. The venue as a whole clearly understand the 14 allergens and labelling situation, and have very clear posters detailing the ingredients for each food offered.

Commendable stuff!

easter 4But, there were no ‘alternative’ foods available, anywhere! Eventually, we found the pub on site, at the front entrance, who were fantastic. The head chef came out to talk to me so I could explain the situation. Having realised that there was not a single food option that was safe, he put forward the suggestion of creating a bowl of chips from scratch, freshly peeled, chopped and fried in a frying pan (as the fryers couldn’t be used due to a very high risk of cross contamination). He also created a simple salad of cucumber and carrot for little dude. To say I was grateful is an understatement! And Callum was very happy with his ‘special’ lunch, which the chef personally came and delivered to him to ensure it remained totally safe at all times until it reached us.

So after a lovely couple of days, we thought we’d have a day at home catching up on house stuff, and letting Chloe and Callum recharge their batteries.

Good thing really, as then Jon came down with the cold that Chloe had…. Yup man flu struck! Which resulted in us cancelling plans for the first weekend as he was feeling pretty rubbish!

staph 1And then, little dude started to show signs of it….!

At first it seemed like it would be similar to Chloe and Jon, a high temperature, croupy style cough, and a nasty headache.

Unfortunately, poor little dude doesn’t do things the easy way, as regular readers will know.

A few days into this cold, Callum had angry looking eczema patches appearing all over his body, with some turning weepy, particularly around his nose.

I had a client meeting at the end of last week, 5 days into Callum’s cold, which meant I was away for half a day. When I got home, Callum clearly wasn’t himself, his nose looked all bruised, as well as his cheek, and there were new spots appearing that looked infected.

Having gone through something similar before, and knowing the signs, I wasn’t happy to leave Callum like this over the weekend and not have it checked. Managing to get a last minute appointment on Friday afternoon, his GP confirmed my suspicions…. The poor dude had staph, again!

mummy & callumHis nose was covered on the outside, the inside, and his cheek was now also affected! No wonder he had been in so much discomfort! Imagine, the whole of the inside of your nose covered in weeping, bloody scabs, and itchy to boot. It’s like a form of mental torture!

A strong dose of antibiotics were prescribed for 5 days, which we are now half way through, and thankfully it appears as if they are slowly helping, although I suspect a second dose will be required to fully kick this to the kerb!

Having an allergic child, with severe eczema is most certainly not easy, and definitely keeps you on your toes!!