A new series of children’s books is making it easier for kids to understand a rare allergic condition suffered by Mackay youngster Felix Matthew.
Felix’s mum Bini has donated the books to Mackay Base Hospital in the hope they will help other children with Eosinophilic Esophagitis (EoE) understand their condition.
EoE is a chronic, allergic inflammatory disease of the oesophagus (food pipe) that means he can suffer dangerous food impaction, poor appetite, failure to thrive, nausea, vomiting, abdominal pain or chest pain, difficulty sleeping and fatigue.
The current estimated prevalence of EoE is 1–4 cases per 10,000 and is rising.
“I also hope that other children who get to read the books will understand what it like for children such as Felix,” Bini said.
The condition means a type of white blood cells called, eosinophils, are found in above normal amounts with in Felix’s throat and these blood cells react when he eats certain foods
Bini is a member of the health service’s Family Advisory Partners, a group of parents and carers that meet each month to provide feedback on health services and offer insights on how to improve the hospital experience for our paediatric patients.
“It’s difficult to find out what Felix is allergic to so we have tried many elimination diets, and removing dairy and soy is helping a lot.
“There can be a delayed reaction so that makes it harder to connect different foods with the inflammation,” she said.
In EoE it is not uncommon for allergy testing to be negative. This means that a food is at low risk for immediate reactions. Food proteins can however stimulate inflammation over days to weeks.
Three-year-old Felix was diagnosed via endoscopy and biopsy – the only way to confirm the diagnosis – in July 2017 after a long journey to determine why he suffered severe reflux since aged eight months.
There is no cure for EGID and EoE, but the goal of treatment is to eliminate the eosinophils in the affected area, thereby alleviating symptoms.
His reaction started when he stopped exclusively breastfeeding and solids were introduced.
“Parties and social situations are hard for him and it’s heartbreaking to see him missing out on treat foods like the other children. It’s also hard for people to understand his allergies too,” she said.
Bini knows of only two other Mackay families with the same condition and says an on-line support group (ausEE Inc.- Australian charity) has been a great support.
ausEE Inc. is an Australian charity providing support and information to anyone diagnosed with or caring for someone with an Eosinophilic Gastrointestinal Disorder (EGID) including Eosinophilic oEsophagitis (EoE).
They are committed to raising public awareness and supporting the medical community for further research into eosinophilic disorders in Australia.
Bini is volunteering for ausEE and doing fundraising.
“I want people to be aware that allergies are a serious problem, and hope that these books will help others in a similar situation, and will help other children understand their friends who have allergies.”