It's hard to imagine life without it being the way it is now.
The changes we've made, and the sacrifices we choose to have as a family, to make things easier for Callum.
With allergies, you find out what the problem is (eventually, and after a long battle!) figure out a way to some how live with them, or at least try to, and start to get a balance to your life again.
Every day life becomes a new routine with a way of overcoming the big obstacles you face all the time with allergies, and also asthma and eczema in Callum's case.
During this time, there are days punctured with appointments. Times which you dread a bit, because you know you have to re-live the horror of what you go through constantly, to see if there's any improvement, however small.
Sometimes you have appointments that you'd really rather not have to go through, and these usually involve repeat allergy testing - and there is nothing else you can feel other than dread!
You will be knowingly taking your little one, to a hospital (which more often than not they hate), to see someone who is going to cause them extreme pain and discomfort.
We're in the process of this at the moment.
Yesterday, Callum had the first of 2 appointments regarding his allergies, eczema and asthma. He sees the same consultant now for all 3, which really does help with continuity of care.
It's not always been like this, so when this does happen, the poor guy gets a bombardment of questions from me!!
After the long battle of the past few months (pneumonia, broken thumb, recurrent chest infection, nasty asthma attack, bad eczema, awful reactions to foods) we finally got some good news at the appointment.
Callum's asthma is confirmed as being 'as under control as it can be', which is wonderful news! His skin also seems to be doing ok, he still has bad flare up patches but the majority of his skin is showing an improvement. Yay!
(I'm under no illusion, the amount of steroids he requires to keep him well, has meant his body has had to admit defeat!)
Following the food trial of strawberries, there is no question that he still has a major issue with them, and likewise with tree nuts.
So, the next stage....
Come early September, Callum will undergo a repeat round of allergy tests to see if things have got better/ worse with everything else.
In addition, he will need to have a number of blood tests done, which will include testing his tolerance to soya, of which there is a concern that he is allergic again, despite trialling him very slowly on a 'soya ladder' for the past year with little improvement. He will also have blood tests for wheat/ gluten/ coeliac as he is showing signs of stomach/ bowel issues.
In order for all these tests to work and actually show up any 'true' results, we will need to take Callum off his medication a week before. The very medication that keeps him comfortable 24/7 from the eczema and allergies.
It'll most likely mean no sleep for the week in the lead up to the appointment, and let's be honest, I won't sleep anyway as I always worry at these appointments because of what they put him through!
The poor boy, it just doesn't seem to ever end for him!!!
And throughout all of this, he still remains happy, upbeat and giggly - a true little star, and a brave little soldier!!
(I love that as I'm typing this, Jon is in the garden tickling Callum, and he's giggling so hard! It's the most magical sound in the world, hearing your little ones giggle like that! It should be bottled up and used for medicine, if only it were possible!)
Everyone within the allergy world will agree, you're always on the look out for unsafe items, or things which could cause a reaction.
It's a 24/7 job, and incredibly tiring to do so. But to not do so, risks the chance of your little one suffering a reaction.
So, imagine when you are on full alert, and something still manages to breach the defences!
My god do you feel guilty!
And that's exactly what happened to me a couple of days ago!
School broke up for the summer holidays, and as is the tradition, a leavers/end of term party is always held the afternoon of the end of term.
As soon as I got back from work, off I went with Chloe and Callum to the party, being held at the village hall, where they had a great time playing with Chloe's school friends.
When the party finished, all the children headed on to the village playground, next to the hall. Swings, roundabout, slides and so on = a great place for them to expel some energy.
Whilst there, I found out, after more than 4 years of living in the village, there is a walnut tree in the playground.
The reason I found out.... Callum came up to me, holding what seemed like two innocent looking green balls. One of the mums (who also has an allergic child) immediately exclaimed that they were 'unripe walnuts', and then asked me what would happen.
This was totally unchartered territory for us. Callum carries an epi-pen due to his nut and tree-nut allergy. We'd never encountered him holding an unripe walnut before!!
Having thrown the offending articles over the fence, I made a sharp retreat back home. As I had absolutely no idea how Callum would react, I needed to be safe rather than sorry, and wanted to have his full arsenal of medicines to hand, just in case.
Within 40 minutes, his hand had started to swell and become very sore!
And this was just from an unripe walnut, still in its outer case!
Luckily, with antihistamine and steroid cream, we were able to control his reaction. And the next day, it had gone down considerably.
However, I think it's safe to say, nuts are still clearly a no go area!
And maybe the playground needs to be for now as well....!
We've been gearing up for an allergy review with Callum's consultant at the beginning of August, and were asked to 'trial' a couple of foods ahead of the appointment, so that repeat allergy tests could be tailored accordingly.
One of the foods is strawberry.
Previously, when Callum has been given strawberry, he almost instantly got hives on his face. A pretty obvious indication that he's having an immediate reaction.
This happened when he was 7 months old, so he's not had strawberries since!
So, this time round, I thought I'd try him on a fruit smoothie, with strawberry being only one of the ingredients. I posted the recipe last week, and it was a big hit! Callum only had a very small amount, but seemed fine, and really enjoyed it.
When trialling a food, you are advised to repeat over 3 days so you can know for definite if a reaction is occurring or not.
Friday afternoon, I decided to make an ice-cream for day 2, again using similar ingredients to what I had used for the smoothie. (I'll post the recipe for the ice-cream next week!).
We were at our next door neighbours house, they have 2 children who are very similar ages to Chloe and Callum, so they all get on really well!
The children had been playing in the paddling pool, and as it was a hot day, had the ice-cream to cool down.
Callum literally had 2-3 tastes of his ice-cream before he handed it to me, saying he wanted me to 'hold it for me mummy'. Thinking he was being his usual cheeky self, I told him to take it back because I wanted to eat one too (god did I feel guilty a few minutes later!). He refused to take it back, and then the symptoms started.
Very itchy, sore, and red eyes.
Really itchy and blotchy face.
Pulling at the throat.
Swelling of the face.
Aaaarrrgggghhhhh god dammit!!
I twigged pretty quickly what was going on (any parent to an allergic child will tell you that you are always on high alert, you can't ever truly relax!), and before my poor neighbour really realised what was happened, I checked she was ok to look after Chloe, told Chloe what I was doing (she's well used to Callum's reactions and doesn't freak out about them) scooped Callum up, and ran as fast as I could to our house, where I plied him with all of his drugs.
Then came the 5 minute wait to see if they would kick in.
Would it be epi-pen and 999....?
Thankfully, I caught it just in time!
The swelling didn't get any worse, and he stopped being quite so itchy.
Once I was certain Callum was ok, I made my way back round to my lovely neighbour, who god bless her, had started to make tea for all the children, Chloe included!
It's true what they say, when a crisis hits, you really do know who your true friends are!
(Thank you so much for your help Dette, it was very much appreciated!! x)
Callum fell asleep as we were walking round, I wasn't worried though, as he usually does this after a major reaction. His obs were fine, and he wasn't presenting with anything causing me alarm.
BUT, I am used to this, and trained! If this happens to your child, please seek guidance from a healthcare professional if you are at all unsure, it is better to be safe than sorry!
While Callum was asleep, the swelling came down, the red patches calmed, and although groggy on waking, appearances were normal.
By Saturday morning, he was back to his usual cheeky self, thank goodness!
I must confess, after him being ok on Thursday, with day 1 of trialling strawberries, I never expected him to react the way he did on day 2.
It just goes to show, you always have to be on full alert when dealing with allergies!
And one thing is for certain, strawberries are definitely staying OFF the menu!!
There comes a time when you need to leave your child in the care of someone else, other than nursery/ child-minder/ school.
It’s good for you to have a break from all the stresses and strains of everyday life!
BUT, it comes with challenges!
You have to be able to truly trust who you leave them with, and know they are fully trained up, just in case the worst does actually happen.
You need to be able to ignore that little voice we all have in our heads, worrying about the ‘what ifs’ (and yep, that is the hardest to ignore!!)
Believe me, it’s not easy!
Jon and I had planned a mummy and daddy day last Friday, that had been months in the organising. We were spending the day in London with friends, seeing the sights, and having a nice wander round, with a stop off at a few pubs en route. Then, heading on to see Robbie Williams in concert in the evening. (I’m a huge fan and make no apologies for it!)
Gram very kindly stepped in to look after Callum, and then Chloe once she finished school, and was joined a little later by our lovely friend Vicky.
Callum was very sad to see us go, and certainly made me feel quite guilty about leaving him. But I was assured that within 5 minutes of us leaving, he was quite happy and his usual chirpy self.
Children are very astute, and it wouldn’t surprise me if he picked up on my anxieties of leaving him, even when with someone I trust completely.
Jon and I had such a lovely, relaxed and chilled out time, visiting the places we used to go to pre children, and reminiscing.
Lunch and dinner were such a different experience!
No worrying about any ‘safe’ foods on the menu!
No issues with cross-contamination!
No ignoring of what I wanted to really eat, just so little dude could eat something and share with me!
Days off with allergies are rare, but boy are they good when you get them!!
If you’re worrying about time away from your little one, there’s a few things you can do to make things as easy as possible for you:
The most important thing to remember though, HAVE FUN!!
My god you will have earned the time off, don’t use the time worrying and stressing. It’s the best opportunity for total down time, and a chance to recharge those very worn batteries.
At least it was in our case!
Callum is one lucky kiddo, there's no doubt about it. The support he receives from family and friends as he negotiates his difficult journey through the allergy world is simply wonderful.
Everyone is aware of what he goes through, and they do their upmost to make things as easy as possible for him.
Take this afternoon as an example. Callum's daddy is working the early shift this week, and once he'd finished for the day, called me to find out what we needed so we could have a BBQ that was also safe for Callum.
He did a fab job, there's enough for a feast!
He even went one further and treated the whole family to an array of ice creams.
Yep, he's a good one! :)
There was even a 'special' package for Callum!
Jon had seen me previously give Callum 'Oreo' biscuits, which are dairy free, and whilst getting the ice creams, came across the Oreo ice creams.
(I know, sweet isn't it!)
But, as an allergy mum, you never take things for granted, and I duly checked the ingredients before Callum could be given it. The one time you don't, is the time you wished to god you had!
Thank goodness I did!
The biscuits are safe, but the ice creams most definitely are NOT, as they contain buttermilk.
Jon's immediate reaction was 'well why would they do that?'.
It's a fair question, why would they? What is the point in having a great dairy free product, and then creating an ice cream based on it, that isn't?
It's all down to how you make ice cream.
In order for it to work, and freeze without crystallizing, you need to have some form of fat content to keep all the ingredients bound together. The buttermilk will be the ingredient that causes this to happen.
Poor Callum, his face fell as he realised he wouldn't be getting the special ice cream his daddy had so kindly found for him (and I felt so sorry for Jon too, as it was a lovely thing he'd tried to do for Callum!), but we've trained Callum well, and he knows that if we say it will make him poorly, he understands we're only keeping him safe.
To make up for it, he got a huge lollipop!
Not quite the same thing as an ice cream, but still a pretty cool prize in a 2 year olds eyes.
I had planned on writing another post today, but events of the past few days have been playing on my mind, to such an extent that I thought I should share and see what others think.
It all started with a blog post from my lovely friend @ChubbaNia on Sunday, written as a direct result of a particularly unpleasant tweet she received. Nia suffers with a similar amount of food allergies to Callum. She struggles on a daily basis to overcome them and live life as ‘normally’ as possible. This particular post essentially told her to man up and deal with it and that it was ‘her fault’ she wasn’t well and to ‘just go find a solution’.
Yup, it didn’t make for pleasant reading.
Then yesterday afternoon, I got pulled into a discussion over a tweet by the infamous Katie Hopkins, stating that children with allergies were merely ‘fussy eaters’ and flippantly saying it was all a load of rubbish.
The world of twitter and facebook went bonkers with responses from people of all fields of the allergy world.
I was asked for my take on it, and initially my response was to go in, all guns blazing, to explain how serious allergies are, and that they’re not to be taken lightly. Nor should flippant comments be made from someone so prominent in the public eye as it makes the fight against allergies much harder than it already is.
But then, I took a step back, and really thought about it.
Yes, the harsh reality of allergies, means that when you read provocative posts, it literally makes your blood boil. You pretty much seethe inside due to the volume of anger you feel.
It may seem like a flippant comment to someone who wants to create a sensation on the internet to snatch 5 minutes more of fame.
Reality is very different.
Reality is watching your precious child try to fight a reaction so severe, you’re not really sure if they’re going to make it (and daren’t voice your fears because it’s too frightening to comprehend if you give them a voice).
Anyone in the allergy world knows that trying to teach the uneducated and misinformed is a daily uphill struggle.
If only life were as simple as ‘manning up’ and ‘finding a solution’.
I long for the day when I can go to sleep at night, not having to worry about when Callum will wake up in pain/ discomfort in the night.
I yearn for a time when we can go out for the day and not have to worry about cross-contamination if we eat out.
I live in hope of the day I can do a food shop without the need to check the ingredients of every single item, just in case manufacturing methods have changed or they’ve added a new ‘unsafe’ ingredient.
Nia has to put up with this on a daily basis, as does Callum, and anyone else afflicted with allergies.
Nia fights every day, as does Callum.
I dread the day Callum becomes aware of all this, and has to start fighting for himself. No-one should be put in that position, when they certainly didn’t ask to suffer with allergies, particularly to such an extreme.
So, there’s really 2 angles to this argument:
Each person will react differently. What I think and feel about this, will be the complete opposite to someone else.
And that’s ok!
People are allowed to have their own individual opinions.
That’s what makes us human.
Maybe, the only additional point I will add to this….. We’re all human, so maybe it might be better to show some human kindness!
Life is too short!
Any parent knows, there comes a time when you have to start thinking about the dreaded 'potty training' as a viable consideration.
Having gone through this with Chloe, I'm far more wary than I was first time round.
With your first, its another milestone.
Something 'amazing' that your precious little one is achieving.
Yep, not this time. I remember very well the puddles on the floor, the going through 15 pairs of pants in the space of just a few hours (how does a child even hold that much liquid in their bladders??!!), or even just the simple cry of 'uh oh mummy!'.
We have been gently introducing Callum to the idea of potty training for a while. The potty became part of his bedtime routine from the age of around 18 months. He knows what its for, what to do with it, and when reminded, does get a fairly good hit rate, which we reward him for. His little face lights up when he achieves a hit, and it's such a pleasure to see him so proud of himself.
So, when is the fine line of 'fairly good hit rate' turned into actively being brave enough to ditch the pull ups and go cold turkey.
I won't lie, the thought terrifies me for a number of reasons.
Primarily, we've been doing extensive work to our house, and have newly laid carpets everywhere. The idea of Callum missing the potty, and hitting the new carpets concerns me greatly!
The other key reason, and one which may resonate more with other parents with children suffering with severe eczema, is the removal of the body suit.
A simple, innocent body suit.
What's the harm in ditching them and getting vests instead.
Nothing to worry about, right...?!
Let me explain!
When a small baby is diagnosed with severe eczema, itching and scratching is a way of life to them. As soon as they have even an inch of bare skin, it's almost as if they are programmed to scratch it to oblivion. While breastfeeding, Callum would feel my skin, and scratch me like crazy, because for him, when you have bare skin, that's what you do. It's heart-breaking to see, but sadly, a reality.
Even now, at 2 years old, if he is able to get to his skin (tummy and back in particular!) he will scratch and itch it to blood, every single time the skin is exposed!
Now, let me take you back to the body suit.
That body suit acts as a barrier, it prevents Callum from getting to his tummy and back and damaging them badly through scratching, which if continued for a prolonged period, will result in infected eczema, which in turn causes many issues.
The dilemma, do we just go for it, ditch the body suit, and actively encourage the potty training when Callum is almost ready to do it. Or, do we leave it a while longer, allow his skin a bit more breathing space, and continue as we are?
Tough call eh!
Ok, I’ll fess up, the title isn’t portraying a blog post that’s as bad as it sounds. Honestly!
But, it is talking about a little known phenomenon, that I’ve only just come across.
I’ve heard of people talking about nappies and their baby’s bottoms appearing to be ‘burned’ by them, and never really took much notice… until now!
When Callum was little we used 'Huggies' nappies, they were fab! And then in their infinite wisdom, they decided to stop selling them in the UK! We weren’t impressed! They never leaked, and were the best available, at least in our opinion!
Ever since, we’ve used the Tesco, nappies. And then the pull-up nappies ever since we started Callum on the potty training journey. He’s still a way off being able to ditch the nappies for good, but to help him, we’re using pull ups, so he has a bit more control and can start to do things for himself.
Since the ‘may contain nuts’ fiasco, I’ve tended to shop in other shops, and more often than not it’s been Sainsbury’s, who I’ve been really impressed with! They have a wonderful and constantly improving ‘free from’ section which caters for most allergies, and their quality is better across the board.
Sainsbury’s also sells its own brand pull up nappies (with its size 5 pack containing more pull ups than Tesco!). Since using the Sainsbury’s nappies, I’ve noticed that if I go back to the Tesco ones, Callum gets a very sore bum within 48hrs. Make that a really sore bum!
And it’s weird, it’s not a bum/nappy rash as you would normally expect, it’s a distinctive irritated eczema type rash, which clears up when the nappies aren’t used, almost like it’s a burn.
I’d written it off as a mere coincidence, but after testing my theory a few times, and googling to find others with similar experiences, I’m now pretty convinced that the nappies are to blame! From the research I’ve done, it sounds as if it could be chemicals to blame, primarily what is used to help draw liquid into the nappy, and what is used to keep the liquid locked away.
It does intrigue me how 2 nappies, which presumably are manufactured in the same/ similar way, can result in 2 very different reactions?
I know Callum is an extremely atopic child, and pretty much allergic to the world, but being potentially allergic to a nappy is a weird one by any standards!
I guess for Callum, the only thing I can do, is to continue with Sainsbury’s, and avoid Tesco. After all, my poor boy goes through enough as it is, without the need for a sore bum, instead of a nice peachy one!
Has anyone else experienced this? Did you get the same reaction? How quickly did it clear up?
A couple of months ago, Callum had a very nasty chest infection. We had no idea. He had no obvious symptoms showing at all, a bit of a cough but nothing major, a bit of a snotty nose, but show me a toddler who isn't affected by snot trails regularly! The only thing that had me getting Callum checked by the GP was that for 3 days on the trot, he was waking around 10-11pm at night, after being asleep since around 7pm, and puking up clear fluid.
It seemed innocent enough, but I mentioned it in passing to the GP as it was 3 days, and Callum was having a check-up due to his eczema flaring up quite badly. (I'd been sufficiently concerned the night before to phone out of hours because Callum was showing signs of 'staf' infection). Turned out I was very right to. The GP took it quite seriously, listened to Callum's chest, and found out that his right lung was so full of gunk, it was deemed 'solid'. They couldn't hear any air going through, and said that he was on the borderline for pneumonia, and gave Callum strong antibiotics. After 2 weeks he needed a further bout of antibiotics and also an inhaler to help him. So, he had it quite bad!
Fast forward to just over a week ago. Callum woke up, slightly raspy chest, and knowing it was a particularly high pollen count, assumed it was to do with this, gave him his inhaler, and didn't think much more of it. Yep, that didn't last long! I went off to work, and Jonny took Callum to our child-minder Mel for 10.30am.
I phoned Jonny at 11am to see how the morning had gone, and to check how Callum had been. Later on in the day, Jonny remembered a seemingly innocent comment from Callum en route to Mel 'want mine rocket Daddy' - we both didn't realise, but he was asking for his inhaler and spacer!
By 11.30am, Mel was on the phone to me at work, strongly suggesting that I come and get Callum immediately as he wasn't breathing very well at all, and he had fallen asleep and it was impossible to wake him. Mel doesn't do something like this lightly, she knows Callum pretty much as well as we do. We trust her completely with his life. She's got to know all his little quirks in the time she's looked after him, so if she's worried, I know I need to be too!
It was another of those blood run cold moments!
When Callum doesn't wake up, it usually means he's got a nasty virus/ infection going through his system, and it causes his body to go into meltdown. Last time was a 3 day stay in the Children's hospital, on double iv antibiotics, iv antiviral, oral antibiotics, oral antiviral, drips galore, and so on.
On my hour long journey from work back to Mel's, I phoned the GP's to get Callum an urgent appointment, and was advised they could fit him in at 3.20pm. Based on the information I'd been given, I simply wasn't prepared to wait until then, so I pushed back quite strongly. Luckily it paid off, as the GPs told me to take Callum straight to the surgery to be reviewed as soon as I arrived. Which I duly did, and thank god I did!
As soon as we got there, the triage nurse called us straight in, took one look at Callum and immediately decided he needed to be nebulised because his breathing was shallow and laboured, or to use their terminology 'a child in respiratory distress'. She wasn't wrong, Callum was working overtime, his stomach muscle was prominent, he was trach ++, the poor boy was really struggling.
Callum totally freaked out with the nebuliser (a mask that emits a vapour which is the equivalent to around 10 puffs of a salbutamol inhaler), so we really struggled to get this vital drug into his lungs to help him breath better.
After waiting 20 minutes to see if it had done anything, we went in to see the GP. Callum initially showed signs of improvement, but as I was talking to the GP, I could tell he was going downhill again, so I questioned the GP about it. To begin with, the GP suggested a course of drugs to improve, and to take Callum home and watch for any particular signs to be aware of. But with Callum, I can't afford to do that because he plummets to bad levels so fast. So I pushed back!
Boy am I glad that I did! Not 5 minutes later, he'd got really bad again, and the GP had no option but to refer us immediately to A&E for further drugs.
8hrs later, another round of being nebulised, steroids galore, inhalers galore, and a lot of consultants and paed consultants seen, one struck 'gold' when he heard a crackle on Callum's right side lung. He was pretty sure it was a continuation of the infection from a couple of months ago. Because it has been so long, he's ordered a chest x-ray for a couple of weeks time, to rule out anything nasty going on.
We're not thinking about that for now, we'll cross that bridge if and when we need to worry about it!
For now, we're just thankful that the drugs have made Callum significantly better, and that his breathing is vastly improved!
And it just goes to show, that as always, a mother knows her baby best, if she says something's not right, chances are it's not!