LIVING… (with anaphylaxis)

Aars camel trekking to an oasis in the Sahara

I grew up in a few different countries, it’s therefore important to me that Aars sees other parts of the world.  I also wanted him to know from an early age that allergy, and the risk of anaphylaxis, need not inhibit his life. So I went for it! If he could travel, he could do anything! Live life to the max.

Travelling opens our minds, expands our knowledge and awareness, importantly for us it also provides perspective. Yes, Aars is very unlucky to have gone into anaphylactic shock four times – but unlike some of the children we met in Malawi, he has clothes, he has education, he has clean water, sanitation and he has readily available food.

Every time we travelled, Aars came home more confident and aware of all the good in his world. He can feel like the odd one out – he was the only one in his primary school who had to carry his meds all the time, the only one who can’t have the birthday chocolates and cakes the other children bring in for the class. He doesn’t get invited to parties or sleepovers as other parents are nervous about anaphylaxis.

BUT as a result of travelling, he knows that there are greater things which make us different, there is a whole world out there with unique children spread across it.

Travel is a huge confidence builder – Aars knew if he could go on Safari in Malawi he could do the school trip, staying at the outward-bound centre and being responsible for his food for four days and three nights which he did in year 5.

He knows that if he survived the journey to the oasis in the Sahara he can survive the school coach trip to France this year. (Sadly due to heath and safety issues and risk assessments  both on the school trips to France in Primary School and in Secondary school they have required me to tag along too.)

I want to share some little tips on living with anaphylaxis with you, and am happy to answer any questions you may have as we have thirteen+ years experience and you may be new to the world of food allergy and anaphylaxis.

Our experience of allergy, anaphylaxis, EoE, environmental allergies… are just that – our experience. Everyone is different and every allergic experience is different. Also as my son has grown older what works for him and what is necessary has changed. We have to be adaptable but the basics remain the same.

HAVE A MEANS OF COMMUNICATING (when throat is closed & you cannot call for help)

I have tried to establish good self-care in him, because as he becomes more independent he also becomes more at risk. So having him carry his AAIs and be responsible for them from the age of 8 has drilled it in to him, and as a teen it has not once been an issue.

The other thing we have found important is to look at it as something we manage. It is not his identity. It does not define who he is. And we try our utmost to ensure that it does not limit his experiences in life. It isn’t all bad! Last year I wrote about the less negative side of living with anaphylaxis on his thirteenth birthday!

 S.O.S – helping your child communicate during anaphylactic shock

Finding support, as you support your child through anaphylaxis

Hospital Challenge Day Checklist

Looking after you! De-stress with yoga

How yoga can help your child

Starting School & Allergy Action Plans

Halloween – A survival guide!

Baking for food allergies

Necessity the mother of invention – creating free-from recipes

FOOD! Friend or Foe

French Vocab: Allergies and Anaphylaxis

A positive spin – how anaphylaxis has enriched our lives!

Silver Birch Pollen Allergy and Cross-Sensitisation with foods

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