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Allergy Parent Story: Susie aka Edinburgh Allergy Mum

Susie Asdell lives in Edinburgh with her partner and 5 year old daughter, who has multiple food allergies and has recently started primary school. She runs the allergy-focused Instagram page @edinburghallergymum

How did you first discover your daughter had a food allergy? 

When my daughter was born, she was a very unsettled baby. She cried all the time and whilst other parents got to spend their maternity leave socialising at mother and baby classes, I couldn’t last a whole session, without removing my crying daughter. The GP prescribed medication for reflux, which helped initially. Aside from this, I was left on my own to figure things out. I knew other mums with babies with cow's milk allergy. However the GP and Health Visitor insisted crying is normal behaviour, and it was very unlikely that allergens could pass through my milk. 

When my daughter was 3 months, she developed severe eczema. She also had other signs of allergy, including congestion and gastro-intestinal symptoms. We did what we could to get the eczema under control, including steroids and emollients from the GP. As she was breastfed, I also tried excluding some foods from my own diet. My daughter’s eczema dramatically improved in just a few weeks. And when I challenged dairy, her other symptoms came back. 

What happened next in your allergy parent journey, from those first symptoms to tests / diagnosis, to potential reintroduction?

At 7 months, my daughter had her first instant IgE-mediated allergic reaction to scrambled eggs. She vomited, had full body hives, and became very drowsy. After this, she had further reactions to milk and a number of other foods. She was referred to the NHS allergy clinic, who did skin prick testing and prescribed EpiPens. 

At age 3, she passed a hospital based food challenge to baked milk. She has since progressed a little further up the milk ladder, and we’ve also introduced very small amounts of baked egg.  

My daughter is also allergic to peanuts, walnuts and sesame. Our NHS service doesn’t offer any options to treat these allergies. I therefore enrolled her to do food allergy “oral immunotherapy” privately. This is slowly desensitising her to her allergens, by feeding her tiny, gradually increasing amounts, under medical supervision. Over time, this is aimed to protect her from a bad reaction, if she accidentally eats these foods. It makes me sad that there is very little NHS provision for these treatments. I really hope that this changes in the future.

How does your child's food allergy impact your day to day life?

Learning to live with food allergies was a difficult journey, particularly at the start and at life transitions (e.g. starting school). However, this has gotten a lot easier over the years. We can now buy many safe food options in regular supermarkets. We’ve benefitted from the increasing popularity of vegan food. We have also adapted across many areas of our lives: cooking, baking, carrying snacks and food wherever we go, travelling abroad, and we even successfully eat out. I feel that there are many ways to overcome the barriers food allergic people face and that we are doing everything we can to raise a child who can self advocate for her own needs, and has no need to be defined by a medical condition.

What have you found the hardest part of being a food allergy parent?

I’ve personally found it very hard to put my trust in others, to care for my child. Starting school was also a little bumpy, with responsibility divided between many different people. However, since we approached and the headteacher direct, to discuss her needs, things have fallen into place.

What tips would you give fellow allergy parents to help them in their journey?

Here are my 5 top tips and learnings from this journey: 

  1. Trust your gut - if you think there is something wrong, keep going until you find the right person to help you. 

  2. If you need to trial removing certain foods that baby may be reacting to, dietitian help is invaluable. If you haven’t been referred to one, you can ask about the Allergy UK dietitian service, via their helpline. It’s also entirely possible to continue to breastfeed while you do this!

  3. New evidence I've read suggests that reflux medicine may not always be the most appropriate treatment for young babies - ask lots of questions about what is the best course of action for your baby, and about any potential root cause.

  4. Studies show that early eczema is often linked to food allergy - it’s important to try to get eczema under control. Eczema Care Online is a great resource for this. Also food products (eg coconut oil, creams with oats or baby products containing sesame (Sesamum Indicum) should be avoided for young babies, especially those with eczema who haven’t yet started solids - due to the risk of sensitising them to food allergy. 

  5. If you have a child with early onset eczema - or if there is eczema, asthma or food allergy in your family - speak to your healthcare provider about whether it's suitable to consider early introduction of solids (especially egg and peanut), from around 4 months.

Anything else you'd like to share?

If things feel tough right now, remember that this is only for now. Things do get better, change and improve with time. 

I write and share about our allergy journey and experience of food allergy treatment. Please do feel free to say hi, get in touch with me or chat over on Instagram: @edinburghallergymum


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