Our Allergy Journey

Our journey began from the moment Zachary was born unexpectedly at 35 weeks. We soon discovered our journey with Zachary would not be textbook. No “What to expect” book was about to guide me through this journey. I exclusively breastfed him for the first 4 months but Zachary showed signs of eczema and severe reflux. The introduction to solids increased the severity of his eczema and colic. The preconceived idea of your baby having soft, silky skin was so remote. The folds of Zachary’s skin and his cheeks were red raw, raised, cracked and eventually weeping. It was obvious something was wrong and I found myself at my local GP begging for a solution. Sadly the reply I received was not the slightest bit helpful. I was told, “it’s eczema and it’s just something you’ll have to live with”. I went away many times knowing in my heart something wasn’t right.

My GP eventually referred me to a skin specialist who also dismissed my concerns and gave me a pile of steroid creams. Prior to my visit with the skin specialist I kept a food diary because I could tell that some days were worse for Zachary and I had a “gut” feeling it could be the food. These doctors are the people you hope will steer you in the right direction however it was good ol’ fashion Mother’s intuition that saved our son, and encouragement from our local baby clinic to keep persevering.

Our journey led us to an allergy clinic who formally diagnosed Zachary with multiple food intolerances and at risk of anaphylaxis to egg, dairy, peanuts and seafood at the age of 7 months. Absolutely shocked and frightened we had no idea what to do next. Thankfully we were allocated a dietician who helped us navigate these uncharted waters. We have no family history of food allergies and it was something we’d barely heard of before. It was scary!

In the last 7 years we’ve tried our best to manage the situation the best way we know how. Our goal has always been to keep Zachary’s life experiences as ‘normal’ as possible, while protecting him from others and the hidden triggers that lurk. There’s no denying it, it’s a constant worry. We try not to let it define us as a family but it has definitely restructured our lives.

Five years ago we started Allergy Kidz ware as a means to help protect Zachary through the various stages of his life. So far so good.

The bibs, hats and t-shirts proved to be the perfect conversation starters at parties, playgroups or at the park when he was a baby and toddler. I struggled with how to tell people he had allergies. I didn’t want to just blurt out “Zachary has allergies please don’t touch him with your cheesy fingers or offer him anything to eat”. I found the customized clothing the perfect ‘icebreaker’. The embroidery made these items a little more stylish and the customizing meant I could write exactly what I wanted, including his specific foods.

The next phase of our allergy journey was “big school”. The idea of him being in a school setting at the age of 4 in prep was frightening, however I knew I had to let go. I developed a very strong magnet backed badge that he would wear on his uniform. This proved to be brilliant in reminding casual staff of Zachary’s special needs. I even had a mother comment that the badge regularly reminded her to watch what she packed in her daughter’s lunch box. The introduction of the medicine bag also proved to be a huge success, particularly with the teachers.

In Year 1 we faced the inevitable question “can I have a lunch order?” I thought to myself how do I handle this one? The quest for this answer saw me working behind the canteen counter every week for a whole term. Not only did he love seeing me in the canteen, I was creating a product I knew would help me reply with confidence “yes you can have a lunch order”. Not only would these disposable food bags help minimize my anxiety but also help protect canteen staff and assist the school at minimizing the risk factors during food prep.

People constantly ask me “How’s his allergies?” This is a question I find difficult to answer. If they mean has he had any allergic reactions lately, my answer was “no”, but is this because he’s outgrown them or is it because we, including the school, have good practices in place and we’re getting it right? The only way to really know is to face an oral food challenge in hospital. This is something I’ve never really had any interest in but seeing we were about to go overseas for 7 weeks I wanted to know if I could take a few risks.

In the back of my mind I thought he was outgrowing his milk/dairy allergy seeing his skin reactions had almost disappeared and he had passed that magic 5th birthday where they say most kids will outgrow it. Well sadly after our first oral food challenge at the RPA Zachary suffered his first anaphylactic reaction to 1mL of milk! It was the most frightening, mother’s guilt experience of my life. Yet, empowering in a strange way. I say empowering because for the first time I saw what anaphylaxis is and how my son reacted. The mystery of it was gone and I thought we can do this, if and only if I ALWAYS carry his medicine bag.

This summer (Dec./Jan 2010) our family traveled to America and Canada for 7 weeks and we had the best holiday ever. It’s funny how a mother of an allergic child ranks a holiday’s success on the health of her kids and positive/safe eating experiences. For the first time ever, our family sat down in a restaurant and enjoyed a meal prepared with TLaC (tender, loving, allergy, care). We met the most incredible people at Mimi’s Café in Anaheim who took our family and Zachary’s needs seriously and gave us the most precious gift, the opportunity to sit down each night as a family and enjoy spectacular meals fit for a king. The best part of the experience was encountering someone who understood how to cater for my allergic son. This act of kindness meant the world to our family and took away some of holiday mealtime stress. What an absolute blessing these people were!

So here we are in 2010 and ready to take on whatever else our allergy journey has in store for us. Dedicated to making our lives as normal as possible we walk together to help protect allergy sufferers and educate the wider community.