So you’ve just found out your kid has a serious food allergy. Welcome to the club.
Someone once described anaphylaxis to me like ‘drowning’. When my boy had his attack it was just like that; he was sinking into death and I couldn’t bring him up for air.
Anaphylactic food allergies are terrifying, confusing, and if I’m honest, very annoying.
I just wish the whole thing would go away. I wish allergies didn’t exist. But here we are. And here you are with me.
Trying to make some sense of what truly is a sh*tty situation, I wanted to lay down some advice as a parent of a kid with serious food allergies.
My little boy felt all the pain, he is the hero here and this post is not about me, but I just want to assure other parents that you’re normal, that I’ve been there too and there are some things that helped me personally. I’m not a doctor, I’m not a therapist or psychologist, I’m ‘just’ a mum.
Here is what helped me in the immediate aftermath…
1.You’re not nuts
If you’ve found out your kid has a serious allergy, and worse still if you found this out the hard way, it’s normal to panic.
I’m over the shock, confusion and panic, but I still get random flashbacks which send my head spinning. One minute I’m relaxing in the shower, then all of a sudden I’m struggling for breath and sobbing on the marble floor.
Lots of people have been like, ‘oh you should get counselling...’ If that works for you, that’s great. But for me, right now, I don’t want to.
For me, personally, just the recognition that this was a really, really stressful moment in my life and my reactions are normal is comforting.
2. Get outside the allergy world
It’s very easy to get sucked into the allergy world. There are Facebook groups, forums, blogs, websites, charities, recipe books, organisations, clinics and books. It’s all consuming.
Yes, they can offer great advice and support, but if you’re not careful, your whole world is taken over by Epipens, trace elements, cross contamination and labeling.
Lean on your friends outside of the allergy sphere. Read an uplifting novel. When the dust settles (and it will), try a new hobby. Exercise.
2. Go offline
You’re a blogger and you’re telling me to avoid the internet? Yup.
There’s some great information online, but there’s also a lot of crap out there. Don’t believe the stuff you read online. Seek out a doctor you trust. Get second opinions. But beware of Dr Google.
Beware of social media too. Switch your phone to flight mode. There are some super supportive people out there, but there are also a lot of crackpots. And trolls. And friends who just don’t understand. Or friends who are so much luckier than you not be going through this.
Desperately trying to get an Epipen for my kid I found it very hard to answer all the pointless questions, (‘yes I am sure it was an allergic attack…’) and not to take offense to some futile comments (why email me to tell me your kid has loads of Epipens, but that you have none to spare?)
I wished I’d turned my phone off.
Information is power. But be sure you find the right information.
Ask your immunologist for reading recommendations. Go for trusted, published, academic journals, not sensational tabloids.
4. Focus on the here and now.
Allergies are a big deal.
I felt totally overwhelmed and panicked. Would we stay in a hotel again? Would we holiday again? Would my kid be OK to go to school? Should we move countries?
I also felt very guilty.
Did I cause his allergies? Maybe it was the antibiotics as a baby? Perhaps it was the disinfectant. Maybe I stopped breastfeeding too soon?
Do you really have to eat granola in front of my kid? I don’t insist on carrying a gun to kindergarten.
Stop. Breathe. Focus.
There’s no point wasting time and energy on panic, guilt or anger.
Personally I became so muddled that a weekly action plan really helped, reminding me to book appointments, buy groceries and pack medicines.
I also drew up a ‘packing check list’ which I still use every time we leave the house (Epipen, snacks, water, nappies…)
And I gritted my teeth and tried not to let exhaustion show itself in anger. ( I admit I often failed).
5. Look after yourself
Yes, the immediate here and now is all about getting your kid healthy. To do that you will have to sacrifice your health.
It’s unlikely you’ll sleep properly, that you’ll eat normally or that your physical health won’t take a bashing while you figure out what caused your kid’s allergy, while you get medication sorted etc etc etc.
But remember that to help your kid, you need to be in decent shape.
I’m not talking about day trips to the spa or about elaborate physical work outs.
After you’ve read this fold your laptop, put your phone down and go to bed. Or for a bath. Or for a walk. You’ll be fresher and better able to deal with all the crap that allergy life throws at you.
And finally… I’ve met three (real) people with allergies here in Santiago after blogging about my experience, and been in touch with several more by email. Feel free to message me if you’re a parent having a hard time.