OUR STORY

Aars – aged 9

My son Aaron (we call him Aars – pronounced “Airs”) was born in Spring 2004. It was a “textbook birth” apparently; and I wondered at the marvel of birth and announced if I could do that again tomorrow I would!

I breastfed Aars exclusively until I became ill with food poisoning and my body stopped producing milk. Aars was five months old and we were on holiday with my family who popped to the shop to buy some formula milk and a bottle for him while I sat on the loo and puked into the bath in our holiday home!

They made up the formula and accidentally as they approached Aars with the bottle a drop of the formula dripped from the bottle and onto his forearm. Immediately a huge blister rose from his wrist to his elbow. They were freaked out! Put the bottle down and the local doctor was called.

I was given drugs to help me produce milk again and we were advised to avoid formula. When it came to weaning he loved banana, so I thought blueberry and banana might be lovely to try – he spat it out and projectile vomited everywhere…all around his mouth he was covered in angry red welts and blisters. This reoccured with numerous foods that I did not know people reacted against – like cranberries and cucumber, humus… We never tried dairy or egg in his mouth as his skin had reacted severely on numerous occasions when he had come into contact with it.

Thus we began to learn of Aaron’s allergies. New food I introduced to Aars’ wrist and if there was a skin reaction we avoided it. If it seemed ok we would put a dot on his lip, if that reacted we left it, but if there was no reaction he would try a tiny bit and see how he felt over 15 minutes…slow and laborious and in honesty we gave up on lots of foods as he had reacted to courgette and berries and foods that were not in everything and not essential in his diet and he was getting scared of foods. We found fruits he was safe with and we foraged together he loved picking plums from the orchard and popping them straight into his mouth. Blackberries, apples, raspberries, strawberries we grew and ate them straight from the plants and trees. My concern was ensuring that he had enough carbs, protein, calcium and vitamins in his diet so that he would grow.

us! three months after the first anaphylaxis

His first anaphylaxis was when he was four and a half – it was a “free-from” biscuit which had changed ingredients to include dairy. In the midst of separation and moving house I had not noticed the little green star stating new ingredients!

Aaron and I baked bread every other day making up recipes as we went; we packed the loaves and buns with seeds and nuts as Aars had no reaction to these and they had good fats in them from my perspective. We baked cookies, cakes, pancakes  & lots of treats that normally had dairy or egg in, experimenting to see what would work in their place. It was normal for us and we enjoyed the process of cooking together. I want to share our very simple recipes with you – which you can adapt for your child’s unique dietary needs as you avoid the allergens which are harmful for them. All of these have been the product of experimenting and fun in the kitchen.

Now Aars is now a teenager! His last two anaphylactic shocks were 5 months apart and both to soya – which had been a “safe” food all his life. It is thought that this is due to a cross-sensitivity with silver birch pollen which we discovered he has a severe allergy to in 2014. This in turn has caused other reactions to previously safe foods, thus we have lost nuts from his diet and various raw fruits. This means that there are recipes on my blog which do include previously safe foods for Aars like nuts – but all the recipes are clearly marked with the allergens in them, so you can find nut-free recipes if that is what you are after.

We were on a journey, introducing foods into his diet through hospital challenges. I wanted to share the information we gathered with other folks struggling with anaphylaxis.

I am learning so much, and I am seeing how hard it is for many parents facing allergy suddenly when their children had previously seemed fine. We have thirteen years of experience with a very limited diet and want to support others new to these restrictions; as well as those going through the hospital food challenges. I have found these to be very stressful and anxiety has gone hand in hand with me as I support Aars on his very exciting journey. None of us should feel alone or overwhelmed, food is not only part of survival it can be a delight and delicious for everyone.

It felt like a huge accomplishment to get Aars safely into his teens, and on his birthday in March to celebrate this momentous occasion posted a piece on the positives Anaphylaxis has brought to our lives! You can read it here!

Over the last couple of years we have continued on our journey – growing in understanding and gathering diagnosis’ which complicate life further. I want to develop the living side of my blog over the coming months – so that as well as providing scrummy free-from recipes it can be a source of information for parents living in the complex world of allergy.

When I started this website I called it FREE 2 BAKE with the optimistic tag line of “recipes of progress : away from anaphylaxis”. The purpose was to supply the hospital with free-from recipes for the parents and carers they came into contact with through the allergy clinic who were new to the notion free-from baking and cooking. Every week, when we went up to the allergy clinic for food challenges, like baked egg and baked dairy challenges, I was scrawling out recipes for desperate mums and nurses.

Aars managed to pass a few of the baked food challenges and we developed recipes for baked egg and baked dairy foods to keep his daily intake tasty and interesting.

Unfortunately Aars became very ill about nine months into the process. It has taken a year, a couple of biopsies under general anaesthetic to receive the understanding and diagnosis of Eosinophilic Esophagitis and Gastritis (normally referred to by the more pronounceable acronym of EoE).  Apparently 2.7% of severely allergic children suffer from EoE and Aars is one of that tiny minority. It means that we have had to abandon the baked allergen intake, and have been unable to pursue a path away from anaphylaxis via the normal desensitisation route. Thus I have abandoned the original overly optimistic tag line of my blog, and changed it to “YUM, FUN & GREAT FOR TUMS”.

We hope that you are encouraged by our story and that you find some yummy recipes you can enjoy with your little ones. To aid you in discovering a creative freedom in approaching baking away from the tradition methods and ingredients.

smiles and peace to you,
Namasté,

Rai x

Apparently I need a disclaimer!?

25 Comments for “OUR STORY”

says:

What a story! I like how you’re not focusing on the restrictions – you make this sound like an adventure for you both. Aars is lucky he has a Mum so committed to his wellbeing, nutritionally and otherwise 🙂

says:

Thank you! I think life should be an adventure, we only get one (in my opinion) It’s exciting and wonderful that we can can turn stumbling blocks into stepping stones to hop and jump over, as well as trip over occasionally. Thanks for your encouragement 🙂

says:

Wow This was so heart touching to read, I love your positivity, How you have managed to focus on all the good things. You seem like such an uplifting person! I love your energy 🙂

My aunt’s daughter also has Anaphylaxis So I kinda understand how hard it is to deal with, maybe not first but at least second hand. She is now around 7 years old and has extreme allergies, especially on the skin. It’s so hard to see that lively little girl in pain and suffering, My aunt and uncle are trying their best. I admire their strength you now yours too.

It’s so nice to meet you. I’m so glad I came across you and your blog. With love,
Zee <3

says:

Hey there,
Thank you for your kind words. I try to find a positive twist to the negatives that get thrown our way on this crazy globe…

Sorry to hear about your aunt’s daughter – that is really tough for her and those of you who love her.

Aars skin was hypersensitive to the food allergens he goes into anaphylaxis from too – but over the years – with as minimal contact with the allergens as is possible – his skin has definitely improved radically. I hope that brings you some encouragement and that your aunts daughter experiences the same improvement with her skin as Aars did.

I am hoping that our experiences will encourage others going through this scary way of living… that it can be an adventure and an opportunity for us to pull together as community supporting one another.

Thank you for sharing the relevance of anaphylaxis and allergy for you, and for being positive, open and caring.
Peace Zee
Rai

says:

Yes that is what doctors say that her condition will get better with age. In a sense that her immunity will increase with time. So we are hoping that with good care and time we will get to see positive progress in her allergies.

Thank you so much Rai, It was really nice to share my experience with you and read yours too, Hoping to see you more often from now. With Love,
Zee <3

says:

What an incredible story! This makes me feel so blessed having no allergies to foods that I love. It’s good to hear that you are finding ways to help your son cop with his allergies. All the best!

~Julie

says:

thanks Julie…happily we enjoy cooking and baking together so are on a journey of culinary discovery – and thanks to lovely bloggers like you we can learn lots of new ways to make food look enticing and have access to lots of scrummy recipes we can try and adapt. I think I will be purchasing some “safe” coloured sprinkles to brighten up Aars food the way you rainbow-ise yours he will love it. cheers for bringing much cheer today! Rai x

says:

I’m so glad to have found your blog i feel so limited in cooking for my daughter with multiple food allergies. I can’t wait to try some out. Thanks so much for sharing your story and posting all these wonderful ideas!

says:

Hey there, so glad to be of help I hope that some of them work for you and your daughter. What is she allergic to? Aars used to be allergic to an insane number of foods when he was little, he had the contact issue like your daughter – happily as he has gotten older he has shed many of the food allergies… and we are working on the remaining foods, but have this new issue of silver birch pollen to contend with… I am going to pop over to your blog 🙂 x

says:

Thanks! I’m fairly new to blogging so I don’t have much up yet. It’s great to hear that there is hope and I’m so happy for your son that he can now eat foods he previously couldn’t. I often wonder whether this will happen for us but only time will tell. Lacey is allergic to dairy eggs all nuts fish shellfish and soy with a query on tapioca. I have never heard of silver birch pollen I will look it up. There are so many unknowns with allergies it is such a learning curve. Great to have found someone else to ‘share’ the journey alongside!

says:

Thanks – there are so many other parents like us trying to muddle our way through these scary waters, the internet brings us closer together. In person I have met one other mum who has a son the same age as Aars with the contact issues, we met at an allergy clinic and both suffer from really dry skin on our hands from OCD hand washing, we kiss our sons on the hair of the head so there is no skin contact… There is a link to a good paper on Silver Birch pollen on my LIVING with anaphylaxis page. Aars is still allergic to dairy, egg and soya (amongst other things) so there should be a nice lot of recipes on here that will work for Lacey. Look forward to reading more of your blogs 🙂 x

says:

Totally get the dry skin on hands can’t avoid that one. Oh great I’ll look up the links and use your recipes to get some variety in her diet

says:

Hi Rai! I really enjoy your blog and all of your amazing recipes! Although my family and I are fortunate not to have any food allergies, I like to bake and cook without eggs or dairy most of the time, and also gluten-free part of the time. I just wanted to say keep up the great recipes, and that I’d like to nominate you for the LIebster award! The details are here: http://feedingyourbeauty.com/2015/03/03/liebster-award-nomination/ It’s a fun way to get to know other bloggers and spread the word about fabulous blogs out there! Take care!

says:

Thanks Larice, really pleased that you are enjoying my blog and all my crazy made up recipes! Also great to be in touch with other mums like you who are choosing to bake healthily for their kids :). Thank you so much for the nomination – I shall be popping over to your site to read up about it. I have never been nominated for anything before so am uber excited about it. Peace and thanks to you x

says:

Hi there! Thanks again for checking out my blog. I can totally sympathize with everything you write. My father, brother and I have been living with deadly food allergies all our lives. My brother, Andrew, suffers from the exact same allergies as your son (if not more). He is allergic to dairy, eggs, peanuts, nuts, fish, turkey, chicken and beef. It has been really tough for him and their have been mishaps, but he is now 25 and has not gone into anaphylactic shock for many years now. I just came here to say, keep doing what you’re doing and Aars will grow up to be a smart and healthy eater.

Cheers,
Colleen
https://allergyfreehippie.wordpress.com

says:

Thanks so much Colleen,
I really appreciate your words of encouragement. So glad that you have all survived your allergies, and that your brother has made it to 25 and hasn’t had any anaphylaxis for years! Must be wonderful, I am aware of what an achievement that is.
We will keep on going and finding ways round the foods Aars is allergic to.
Thanks again,
Rai x

says:

Great blog, loving your recipe ideas.

says:

Cheers Chloe, it’s great to know that we can bake and make wonderful treats free-from dairy and other allergens! As you write on your blog, the world is far better at providing us with alternatives these days in comparison to when you were young… hopefully eating out will follow suit! smiles and health to you xx

says:

Eating out is slowing getting better here in the UK with the new allergen regulations. Hopefully, this will result in more safe dairy / lactose free options when eating out.

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