Bella was born in 2003 and for the first few months of her life, we did not notice anything unusual, until she began to fail to thrive at four months old, even before solids were introduced. She was breastfed until she was 13 months old, with me removing milk from my diet when she was about seven months as we knew from then that she couldn’t tolerate dairy as she would get an immediate rash when we trialled formulas – including hypo-allergenic formula. Over these months we saw several doctors and paediatricians all with different opinions and no answers as to why she wasn’t growing. Until finally, at 18 months old she was referred to a gastroenterologist for an endoscopy and she was diagnosed with eosinophilic oesophagitis (EoE) – which we had never heard of! We were given a prescription for an amino acid formula that very day and she has been on that formula ever since. She is now about to turn 13 years old, so yes I have a teenager who still drinks an amino acid formula and we are very thankful of that!
EoE is the most common of the eosinophilic gastrointestinal disorders (EGID) and when Bella was diagnosed over 11 years ago it was a rare disease affecting 1 in 10,000 people. Over the years, the prevalence has increased and it is now thought to affect as many as 1 in 1,000 people. EGIDs occur when eosinophils (pronounced ee-oh-sin-oh-fills), a type of white blood cell, are found in above normal amounts within the gastrointestinal tract. The eosinophils attack foods (or airborne allergens) creating an allergic response and cause inflammation wherever they may gather, in Bella’s case it’s in her oesophagus.
Looking back to before her diagnosis, Bella never showed any obvious signs of reflux or pain, but we later worked out, that she just didn’t know any other way of feeling, as when she became vocal she could explain her tummy aches and ‘bubbles’ in her throat. She also has other symptoms including difficulty swallowing, food avoidance, chest and leg pain. In the months after Bella’s EoE diagnosis, she underwent allergy testing and we received confirmation that she has multiple food allergies, and is at risk of anaphylaxis to milk, egg and fish. Over the years it has been a lot of trial and error to find out her EoE triggers and her allergies have also changed with her outgrowing some and also gaining more allergies. Bella has an endoscopy each year to check the status of her EoE and has skin prick testing yearly also to confirm her allergies. She currently needs to avoid milk, egg, fish, wheat, soy, corn, chicken and peanut. She also has rhinitis, asthma and eczema. There is a lot of planning involved when you have a child with multiple allergies and EoE, you can’t go anywhere without being prepared and holidays end up being so much work that you practically need a holiday to get over the holiday! I would, however, have to say the biggest challenge is the psychological impact, I think I could write a book on that alone!
Through all of this, her main source of nutrition, and as a treatment for her EoE, has been an amino acid formula. She began drinking it when she was 18 months old and continued to do so from her favourite sippy cup until she was six years old, when unfortunately, it just became harder and harder for her to drink enough of it. She was seven years old when we made the difficult decision for her to have a feeding tube inserted into her stomach and it served her well for nearly four years. During that time, she thrived and had energy like never before, so much so that she took up Cheerleading as a sport, and last year, when she was 11 years old, she decided to go back to drinking her amino acid formula so she could have her feeding tube removed. Now, at nearly 13 years old, due to her current medication and therapy regime, she has increased her food intake enough that she only needs an amino acid formula twice a day to supplement her limited diet.
Bella was diagnosed with EoE in 2005, and in 2009, after years of feeling isolated and frustrated by the lack of information and support available in Australia for those with EGIDs, I founded ausEE Inc. which is an Australian charity dedicated to improving lives affected by eosinophilic disorders. Fast forward to 2016 and we are now supporting over 1,000 people living with EGID and also the medical community. You can find out more about ausEE and eosinophilic gastrointestinal disorders at www.ausee.org.au
Bella thrived and had energy like never before, so much so that she took up Cheerleading as a sport!