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My two gorgeous sons have a life threatening type of allergy called anaphylaxis. It's a very severe form of allergic reaction that must be treated as a medical emergency requiring immediate treatment and urgent medical attention. It can be a matter of life or death.
Allergies. When people hear this word they think of a few red welts, itchy skin and maybe runny eyes or nose. Pretty uncomfortable right? So, when the conversation among other parents or mothers turns to the fact that your child has 'allergies' and how different your life is, you can almost hear the sighing and the whispers and see the rolling of the eyes.
What they don't understand is there are different levels of allergies. My two gorgeous sons have a life threatening type of allergy called anaphylaxis. Anaphylaxis is a generalised allergic reaction, which often involves more than one body system. These could be the skin, respiratory system, gastro intestinal or cardiovascular system. So, you could say it is basically a food allergy that's gone berserk! It's a very severe form of allergic reaction that must be treated as a medical emergency requiring immediate treatment and urgent medical attention. It can be life or death.
I had no previous knowledge of what anaphylaxis was until one cold day in May. My eldest boy, Tom, was three-years-old and we were doing our food shopping at a local supermarket. I had my fourteen-month-old baby in the trolley and Tom was helping me choose the fruit and veggies. Nothing out of the ordinary until Tom helped himself to a cashew nut out of one of those bins that hold loose nuts. He had put it straight into his mouth before I could say a word, promptly chewed it and swallowed it. I didn't worry then about WHAT he had eaten as he had no diagnosed nut allergy at that point. I was more worried that he had taken something he shouldn't and so started to scold him for taking things without asking when in the space of about twenty seconds, he started to cough. I mean, really cough. I thought he was choking, so I started patting him on the back. He started to cry in a very distressed way and his voice sounded funny. The coughing sounded like a seal when it barks. I knew something was very wrong.
His skin seemed to flush instantly - a deep purplish colour. His eyes started to swell until they were slits. His lips were swelling until his top lip appeared to touch the bottom of his nostrils, like he'd gone a few rounds with Mike Tyson. I could see these large red welts appearing on his face, ears and neck. He started clawing at himself, at the welts, and trying to tell me how itchy he was inside his body. His lips were so thick I could barely understand what he was saying. 'Help me Mummy, help me!'
What do you do as a mother when your three-year-old son is morphing into something unrecognisable in front of your eyes in a matter of two minutes! I was sick with panic. I looked around me and people were just standing there staring at us. I remember saying 'Help! Can anyone help?' It was like I had floated outside of my body and was watching from above, sitting on the fluorescent lights. It was unreal. No one said anything or stepped forward. I remember picking him up, leaving all my shopping, picking up my baby under the other arm and RUNNING. I ran to the car with Tom trying to vomit under my arm all the way. I remember throwing both of them in the back of the car and Tom crying saying 'I wet my pants Mummy, I wet my pants.' I rung my husband on the drive there and told him to the hospital NOW. I knew we all needed him, Tom especially.
The hospital was close by and upon running into the ED, again with one baby under each arm, I was screaming 'He's having a reaction to a cashew, HELP!' I had a woman yell to me 'Push the red button!' and pointed to a button on the wall. I did and it seemed help swarmed from everywhere. Tom by this stage was purple and swollen. If you had pointed him out to me in a group of other children I would not have known him as the baby I had birthed and raised. This is what anaphylaxis can do.
The doctors put him on a big bed and were rapidly firing questions at me. I answered as best I could, although I felt I hadn't breathed myself up until this point. His blood pressure was dropping, he was put on oxygen. They gave him oral steroids, were making comments about his cardiac output and were poking him here and pushing there. I wanted to hold my baby, to tell him he would be alright. I wasn't sure he could even see me as his eyes were swollen so tightly shut. I was calling over the doctors shoulder 'I love you Tommy, I love you darling'. My voice kept cracking and among all the noise and bustle of the doctors and nurses, I knew he couldn't hear me.
They gave him the Epipen (or adrenaline shot) into his thigh and Tom didn't even cry. He was too busy fighting for breath. I remember them giving him another dose as he wasn't breathing as soon as they would have liked him too. He started to come back to us. You could literally see the flushing of his skin beginning to fade, like someone was physically draining his body of blood. He stopped making those horrid noises and his breath seemed to come more easily through his mask with every passing minute. The nurse let me go to him and he looked up at me and I could see his beautiful blue eyes once more. He said to me 'Are you ok Mum? Don't cry'. I was far from okay, but I thanked God he looked like he would be.
They kept us there for a number of hours for monitoring and sent us home late that night with a script for an Epipen and told us to go and see our local GP. The ED doctor told me he had suffered an anaphylaxis to the cashew nut and that we would need to see an allergy specialist in the city. I remember him saying to me, 'your life is going to change from here on out'. Boy, never a truer word was spoken!
We took Tom to the city to have allergy testing done. He had skin prick testing and of course it showed anaphylaxis level reaction to tree nuts. We now carry two Epipens everywhere we go. Even to the local park!
Because of what happened to Tom, we had our second son allergy tested. He tested positive with a life threatening allergy to all dairy, egg, tree nuts and peanuts. He also has many other food allergies and intolerances. I know how to deal with this now, so although I was upset to hear this diagnosis, I knew I could cope with it.
It has been a difficult journey that's for sure. When you have children who are cut from different cloth, you need to make big adjustments in your life. You may lose friends along the way who do not understand the extreme lengths you need to go to keep your children safe. It's not a life you choose to live, or wish to live, but it is necessary to keep your children alive. How can you not understand this as a parent? How can you think someone is being neurotic if it means they get to kiss that precious face at the end of the school day?
I have to read all labels on food packages every time when I go food shopping. It seems to take ages. I cook everything from scratch now to minimise risks to my boys. Whenever we go to anyone's house, I bring all their own food. We wash hands like crazy people! Tom has started pre-primary this year and it has been a big challenge to work with the school to put boundaries around our boy to ensure his safety at school and also so we get our boy back at the end of the school day.
He finds it hard to be the 'nut kid' as others have labelled him. The teacher asked me if I wanted to call in the school psychologist to talk to Tom as he is frightened to even hold the other children's hands in case they have nut residue on them. It breaks my heart, more than I can explain. We had a special meeting of the class parents where I did a special talk and appealed to all of them, from one parent's heart to another's to please be considerate of what they packed in their child's lunch box every day. Most were fantastic but I still saw skepticism on some faces. That will always be. How can you convey the absolute seriousness of this condition unless you have experienced it first hand? To be faced with your child's mortality on a daily basis is something that draws life from your soul. You need to find a way to live with it and try and focus on the fact you are doing all you can to keep them safe.
It was hard not to keep my son in cotton wool at first, to not let him do this or that. Go here or there. Touch this or that. I have had to realise he has to live in the real world to grow up to be a whole person. I don't want him consumed with fear himself. It is a fine line you tread as an 'allergy mum'- to protect your child or children, yet try and let them lead as normal a life as possible; to hear the whispers and sighs of other parents, yet still hold your head high and smile. The positive effect it has had on the other children in Tom's class has been phenomenal. They are developing care and compassion. They look after Tom and remind each other to wash their hands upon entering the classroom in the morning. They remind me that they have a birthday that day and if I remembered to bring a 'safe cupcake' for Tom. Bless these babies, for they will grow up to be compassionate and caring adults.
So, next time you hear an 'allergy mum' make a comment about her child's anaphylaxis, please remember we are just like you. Our babies are just like your babies. Except they are cut from different cloth.
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