‘Anaphylaxis: The Pain Of Living With A Kid With An Allergy

Son being born was one the happiest days of my life. He was born in September, almost a year to the day since we lost our first boy to a stillbirth at 42 weeks.

Every single aspect of those few weeks after he was born was simply idyllic. The sun shone, England won the ashes (cue extremely happy granddads and uncles) and we were all so relieved he had been born safely we were on a complete high.

I breastfed him for about nine months and, before my maternity leave ran out, we decided to go visit my parents who were living in Spain at the time. One morning my mum suggested giving Son some scrambled eggs.

Now this is when I learned a valuable life lesson. LISTEN TO YOUR GUT INSTINCT!

My first thought was, ‘no, he hasn’t had egg yet, maybe I should wait a little longer before introducing it?’

Quickly followed by, ‘don’t be silly, he’s over nine months now, it’ll be fine.’

I told my mum to go ahead so off she went and made Son a large plate of scrambled eggs on toast. He gurgled away as she fed him and all seemed to be well

A few hours later the horror kicked in. First of all, I noticed he had developed an odd rash on his hands and stomach. Initially I dismissed it as a lingering effect of a virus he had recently recovered from.

However, within thirty minutes the strange rash had got worse, flaring up to a reddened wash that slowly spread across his whole body. What really started to ring alarm bells, and made me feel sick to the core, was his lips started to look a bit swollen.

The alarm bells were really clanging now. Rob wasn’t too concerned but it wasn’t long before Son became floppy.

This is always a real danger sign with babies. If they start not reacting, and going limp, then something is seriously wrong.

I cursed the fact we were in Spain and I had absolutely no Spanish, despite the efforts of poor Señor T. when I was at school.

Dad rushed me, Mum, Rob and Son to the emergency unit of the local hospital. I cannot describe to you the horror flashing through me, I was haunted by the day we lost James and simply couldn’t bear the thought of having to go through anything like that again.

By this time Son was livid red all over and lay floppy and still in my arms. The waiting room was rammed. A nurse took a cursory glance at Son and pointed upwards. I shrugged as I had no idea what she was trying to say. I realised after she left that she was assuming Son was sunburned.

It took ten minutes for this to filter through  my panic-jellied brain. We were all waiting getting increasingly frantic. I couldn’t sit still any more so leaped to my feet and carried Son over to the receptionist. With intense, nervous energy I mimed as hard as I could – No Sun! No Sun!

Eventually she understood what I meant, and we were ushered through to a side room where the doctor and nurse immediately crowded round Son. They touched his skin, took his heart rate and shook their heads in mystification.

My mum elbowed her way into the room and said, ‘I speak Spanish! I speak Spanish!’

I looked at her in astonishment. In thirty years I had only ever heard her say ‘un café con leche por favor’ and ‘¿Cuánto cuesta?’ at markets.

The Doctor immediately fired a volley of Spanish at my Mum, gesticulating to Son.

‘What’s he saying?’ I asked.

‘Sorry, darling, I’ve no idea,’ she replied.

Eventually, through the power of more graphic mime I understood they needed to take Son for urgent blood tests. As the poor thing was so tiny they had to stretch his little arms along a wooden frame so they could draw some blood. I can still hear him screaming out for me now, and it gives me the cold sweats.

The nurse manhandled me out into the corridor. I kept asking her what they thought it was. She tapped her arm and then her head over and over, indicating a blood problem in the head – meningitis.

Oh God the horror of it. The terror of waiting for the results. Dad, Rob and I pacing up and down while Mum tried to track down a translator on the phone.

Finally, the results came through at the same time a little, mustachioed English man arrived who could translate, thank God.

It wasn’t meningitis That was the good news, but Son was still bright red with a puffy face and lips. He was awake, but just lying quietly gazing up at me.

‘They are asking has your son been ill recently?’ The kindly man with a mustache asked.

‘No, just a bit of a virus before we flew out.. hang on!’ I felt like such an idiot that I hadn’t thought of this before.

‘HUEVOS!’ I said to the doctor, ‘HUEVOS! First time! Today! Premio Huevos’ and mimed eating eggs. I had run my hand through my hair so many times it was standing straight up. I looked like a mad woman. I had completely forgotten the translator was there.

Luckily he was more intelligent and less insane than I was at that moment and, quickly grasping what I was trying to say, pushed me gently aside and starting talking in Spanish – so fast I couldn’t make out a word.

Immediately they rushed son to another room in the emergency wing. They strapped him up to all sorts of drips. Poor Son looked awful, both his little chubby arms were now strapped to the frames and he lay with a bewildered look on his face, occasionally crying weakly. Rob and I just sat there, holding hands tightly and praying Son would be OK.

We didn’t say it, but both of us were remembering holding our dead son only eighteen months before. Surely this couldn’t happen again?

It didn’t help that we were surrounded by staff speaking in Spanish so we felt cut off from everything, not knowing what was going on. I texted my brother and friends back home to let them know what was happening, just for something to do while we waited, and trying everything to take my mind off the horror of how ill Son was.

After an hour of pumping hydrocortisone into Son, he started being sick, really, really sick. Great bursts made up entirely of egg that you could see hadn’t been digested at all. The nurses, my Dad and the doctors all looked delighted.

‘He’ll be alright now,’  my Dad said. His face a picture of joy.

And he was. Thank goodness. The second he got rid of the egg he perked up within minutes. The drip seemed to have stopped his face and lips swelling further than they had when we arrived, but once he was sick, he returned to normal incredibly quickly. They kept him in overnight, and insisted on keeping his arms strapped to the boards in case Son needed further medication and tests.

I remember feeling drenched with relief and took a picture of Son on my phone which I sent to family and friends saying, ‘Son on the mend! Feeling much better! Should be out tomorrow.’

I had massively underestimated the impact of the picture. All the replies I had were full of shock and concern. Looking at the picture I had sent I can now see why. Son had both his arms strapped to boards, holding him in a crucifix position. He had a drip going into one arm and another down his nose; his little chest was covered with heart rate monitor pads and wires.

I hadn’t really seen all that. All I could see was that he was sitting up and had a big smile on his face, with not a trace of red on his skin – a massive improvement as far as I was concerned.

Rob, Dad and Mum had to go home and I sat up the whole night watching over Son as he slept. Ironically, the hospital was planted right in the middle of one of the most beautiful areas of Marbella countryside and the view from my window was probably the best to be had in all of Spain.

The next day, before we went home, the translator returned to pass on the final notes from the doctor.

‘Do not give your son egg,’ he said, ‘he is seriously allergic. Life threatening. The next time he has egg the reaction may be even worse. It can stop him breathing by swelling up his airways.’

They handed over an epi pen and mimed how to use it. I was so glad to get out of there I didn’t really think through the implications of this. I just thought, ‘OK we just won’t give him egg – he’ll be fine.’

Doctors recommended having Son tested fairly regulalry to monitor how his allergy was going and whether he was growing out of it. When he was about three we took him in and the doctor put a micro dot of three different substances on the skin of son’s arm. The first was purified water, the second – egg white, and the third a speck of egg yolk.

Look at the reaction that came up within about two seconds.

A picture of a young child's arm with a very visible rash

I still can’t believe how strongly Son’s skin reacted to such a tiny, tiny dot of egg white. He reacted to the yolk as well, but not like this.

Again we were warned that Son must completely avoid egg as the rash you see here on his arm would manifest itself in swelling and puffiness in his mouth and throat – cutting off his breathing.

We managed it very well until Son went to school. Then I would have nightmares about pupils forcing an egg sandwich down him, or him eating a cake without realising it had egg in the icing.

When Son started a new school in year 1 we were told I could no longer send him in with a packed lunch, the school provided dinners and they could easily manage his egg allergy. Well, so they said.

A week in I nearly had a heart attack when they phoned me to say Son had accidentally been given lemon meringue pie. Which is basically egg jam with egg white whipped on top. It couldn’t be more eggy.

Luckily, he only had one little bite and sensibly turned to the teacher next to him lisping, ‘my mouth feels a bit funny.’ He was immediately given Piriton and then the dear headmistress of the time followed him around for the rest of the afternoon, eagle eyed for any possible hint of a further reaction. The medicine kicked in quickly and they didn’t have to use the epipen.

Managing Son’s allergy can be very difficult now he is out in the big wide world. I always have at the back of my mind – what if his mates give him egg as a joke? Could the staff get to him in time? – but I have to ruthlessly suppress that worry otherwise it will drive me mad. Son is a very sensible lad and can now read and check his own ingredients, which is a bit of a weight off my mind. He is not overly keen to take his allergy pack whenever he goes on a sleepover with a mate, and this has got harder to enforce as he has got older.

img_3894

Son’s Allergy Kit

Near Misses

Over the course of the past twelve years, despite our best efforts, Son has been given egg a number of times. Luckily we have got the Piriton down him in time so we haven’t yet (touch wood) had to use the epi pens on him.

  • When he was about two and a half we visited a pub to have a roast dinner. Pork. Lovely. Lots of apple sauce. I gave son a little spoonful to taste. When the hives came up on his hands I read the label on the jar: egg white.
  • Hives appeared all over Son’s stomach after eating Mentos – my mother-in-law had bought them for him for years but they changed the recipe and we didn’t realise.
  • Mum made chicken for the BBQ, she dusted it with chicken gravy powder to spice them up. Hives appeared. Egg in the gravy powder.
  • Playing football and general wrestling with his Spanish mates one holiday the dreaded hives appeared on Son’s torso. They’d had a tortilla omelette for lunch and the egg was still on their hands.
  • My Mum at a BBQ one day was peeling prawns for Son; without thinking she dunked one in a giant bowl of garlic mayonnaise and shoved it in son’s mouth. Cue lots of spitting, wiping, rinsing with water and more Piriton.
  • For the past twelve years Rob has always said to Son – ‘The only person you can really trust not to give you egg is your mother, she always, always checks. Everyone else will forget, so make sure you don’t trust them, you need to double check yourself. But you can trust your mother.’ This was true until the horrible day last year when I gave him a sausage roll at a family party. I COMPLETELY forgot they were glazed with egg and that’s why there were on the ‘separate’ plate so Son knew not to eat them.  I think he still trusts me, but he was wary for a bit.

Everyone of these instances, and many more besides, are burned onto my memory.

Shops and Restaurants

This is where things get even harder. So many people still don’t appreciate the effort of trying to feed your child without making them feel left out or a freak. Many don’t have a clue that allergens can be life threatening – even cafes and restaurants.

I’ve lost count of the times when asking if they have any egg free sandwiches I’ve been offered tuna mayonnaise.

I am that annoying, neurotic mother who mentions over and over again their child has an allergy. If I get a gut feeling the waiter isn’t taking on board what I have said I always go, ‘it’s just that if the food DOES have egg in, IT CAN KILL HIM’ which always prompts them to say, ‘OK, I’ll just double check,’ usually leading to them returning saying, ‘actually that dish does have egg in. Good job I checked!’ ha ha.

Rob (and Son) always tut and sigh when I do the ‘IT CAN KILL HIM!’ routine, but he agrees we have had too many occasions when they haven’t taken us seriously. Giving us egg free ice cream, for example, but adding a meringue topping or eggy wafer.

Once, we had gone on a birthday lunch to a famous Italian restaurant. Son wanted pasta and we were assured by the staff no egg was in it. They even showed me the packaging. Son asked for cheese on top. I asked the extraordinarily arrogant and Italian waiter if he could check whether the Parmesan had egg in.

With a great air of patronising exasperation, he shook his head with a little smile which made me want to punch him. ‘I can assure you, madam,’ he said in tones of long suffering patience, ‘there is no egg in Parmesan.’ He waggled his eyebrows to indicate I was a fucking idiot if I thought any differently. I opened my mouth to do a ‘because it could KILL HIM’ again, but Rob put his hand on mine and shook his head. ‘I’m sure its fine,’ he mouthed.

Son was lifting a Parmesan covered mountain of pasta to his mouth when Mr Sniffy – the snooty waiter – literally SKIDDED across the floor and whipped the plate away from him, knocking his fork aside.

‘What the…?’ we all shouted.

‘I’m sorry sir, madam. The Parmesan does indeed have egg in.’ he replied, wiping his sweating brow with Daughter’s napkin.

Well!

I’d like to say we never ate there again as a protest, but they do really amazing breakfasts and pasta, so we have actually been again quite a lot. I always give that waiter a bit of a pointed glance though.

It is also tremendously frustrating when you go to shops to buy snacks and sandwiches etc and some shops – particularly farm shops – will proudly declaim in their packaging that they are ‘Gluten free!’ But when I look at them closely I see that nowhere do they list any other possible allergens. This seems crazy. Of course if you are intolerant to gluten you need to avoid it, particularly if you are a coeliac, but – and correct me if I’m wrong – my assumption was that gluten won’t actually stop  you breathing.

So  why identify gluten as an ingredient but neglect to mention substances such as nut and egg? Well known allergens which can kill??

Grrrrrrr

People tell me I should stop taking Son out to restaurants and just keep him at home and feed him where I know it is safe. The trouble with this is it doesn’t prepare him for the world. He is growing so quickly I am conscious it’s not long before he’s out there on his own.

Also – is it unreasonable of me to say to a restaurant, ‘could you tell me which of your meals don’t contain egg?’

The good thing is Son doesn’t seem to react to foods which ‘may contain egg’ or ‘produced in a factory which uses egg.’ What he does react to is egg as an ingredient. As all ingredients are listed somewhere it doesn’t take long to find out what is egg free.

I must say, restaurants now are so much better than they were when Son was young and staff can be great at whipping out the allergen menu so we can check for son. Wagamama is excellent for this and always obliging. Companies like Gourmet Burger are not so good as all their burgers AND their buns have egg in, so we can’t go there. (Why don’t they have a couple of egg-free white rolls around for people like my boy?)

What I still regularly run into, though, is staff who think I’m an idiot, or neurotic, or a mad old woman because I go on about his allergy so much. I remain unapologetic, however. As his mother I don’t care about how much I embarrass myself (and him), he is my responsibility, and I’m not having him eat egg when he’s on my watch. (Except for the unfortunate sausage roll incident)

So if you’re reading this and feeling a bit eye rolly about people moaning about allergies (NOT food intolerance, but real, life threatening allergies) I hope this post explains why that middle-aged frumpy woman is asking for the third time whether the food she is giving her son has egg in. Trust me, anaphylactic shock is not pretty, it can kill, and the only cure is jabbing your gorgeous child in the thigh with an enormous syringe full of adrenaline. Best avoided if possible, I think.

 

Advertisements

14 thoughts on “‘Anaphylaxis: The Pain Of Living With A Kid With An Allergy

  1. Claudette

    What an ordeal.

    I am familiar with egg allergy, my sister’s daughter and only child has the same allergy. In her 14 years of life she’s been to the hospital too many times due to serious and adverse egg reactions.

    They told her, egg white is composed of 9 different proteins / amino acids which can be, and are, isolated and put into packaged, processed foods. You have to be so diligent reading ingredient lists, and you have to know the alternate terminology of all the proteins that make up egg.

    Sigh.

    Liked by 1 person

  2. Juliet

    That is utterly horrendous – we thought we had it bad enough with the 22yr old daughter (coeliac and lactose intolerant – she swells up in the belly like a little puffer fish and is in horrible pain, but like you say NOT life threatening). There’s the thing about offspring – before them we were invincible leaving our parents to fret and worry, once we have them especially if we have lost a child we are never that same invincible, fearless woman again. The thing that amazes me is why they put so many ingredients in stuff these days – things that you just wonder why the eff it is in there.

    Liked by 1 person

    1. middleagedwarrior

      A very wise comment – often I read the ingredient list and think it may have no egg but I’m not giving him this crap! It’s made me much more aware of how processed our food is. Also, you know those restaurants where they say, ‘please don’t mind the wait! We cook everything from scratch!’ When you have a child with an allergy you discover this is total BS. When I’ve taken son into these restaurants they always then bring out some pack of frozen food to show us the ingredients. Freshly cooked from scratch by backside!! Coeliac is nasty, a couple of my pupils have it and it can be a nightmare. People often think they are just on faddy diets – they don’t recognise these are serious conditions!

      Like

  3. The Lockwood Echo

    I can’t imagine how difficult that makes life for you and your family, seems like such a simple thing to avoid, but I know it’s not. I’m vegetarian, so although that’s a lifestyle choice, I am aware of how ingredients you want, in your case NEED to avoid, can pop up in the most unlikeliest of places. Egg in Parmesan? In adult life I became randomly allergic to hazelnuts. Completely new and out of the blue hobby for me. Thankfully it’s been easy to police as it’s a stand alone ingredient that’s bold in lists, and am too ok with ‘may contain’. Egg is way more complicated to spot. And everywhere. So I think you’re right in not keeping food to indoors, the more experiences he has to the lesser known risks, the better educated he is and more likely to avoid a reaction.

    Liked by 1 person

  4. Pingback: ‘But you said we could make Rainbow Cake!’ The Horrors of Baking – Middle-Aged Warrior

  5. EluminoraCreations

    Thank you for writing about such a difficult topic. I can sympathize; I have a severe tree nut allergy, which I don’t think is life-threatening but which has caused all sorts of problems in the past. I can’t tell you how many times I’ve asked about nuts in a dish at a restaurant and been met with a blank look. Don’t people understand how dangerous allergies can be? As I was reading your post I remembered a time long ago, on a school field trip, when we visited an ice cream factory and were given our choice to taste. I asked the server to wash the scoop…and one of my classmates snickered. She snickered at me. Some people have no idea what we allergy-sufferers have to deal with.

    Liked by 1 person

    1. middleagedwarrior

      I’m sorry to hear you’ve had to deal with this. It’s upsetting when people laugh or make jokes when you are just trying to make sure you don’t go into anaphylactic shock of have a nasty reaction! I get this at Subway when I have to remind them to change their gloves so mayonnaise from the previous customer doesn’t get onto my son’s sandwich. They look at me like I’m mad but I’m pretty sure changing gloves is something they should do every time anyway! So frustrating! They should know better these days.

      Liked by 1 person

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google+ photo

You are commenting using your Google+ account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

w

Connecting to %s