Andy started throwing up, between 2-4 times a day, most days from 8 months old, and by the time he was 1 year old he was categorised as ‘failure to thrive’. Even though I had taken him to many doctor visits, I was told that’s just what some kids do. As his weight now wasn’t registering in the growth charts he was referred to a paediatrician. This is when the tests began. He had ultrasounds, blood tests, x-rays, a barium swallow and we had eliminated a lot but still had no answers.
Finally the decision was made to put him under General Anaesthetic at 15 months old for an endoscopy to see what was happening inside. The diagnosis of EoE was handed down and we began trying to understand this rare disease.
Eosinophilic Oesophagitis (EoE) is an inflammatory disease that is characterised by eosinophils (allergy cells) building up in the lining of the oesophagus. The eosinophils cause inflammation in the oesophagus which causes symptoms of feeding intolerance, poor weight gain, vomiting and reflux like symptoms.
After his diagnosis, Andy was put on the top 8 elimination diet and on Neocate formula to bump up his calorie intake.
The reasons why some people have EoE is not fully understood but a strong connection has been made between food allergies and EoE. To date Andy has undergone 6 hospital stays to have an endoscopy performed as this is the only way this disease can be diagnosed and confirmed. He has biopsies taken that confirm the extent of eosinophils in his oesophagus and determine how his body is reacting to the diets we are trying at that time. We really hope one day he will not have to go under an anaesthetic for this as it is quite traumatic for all.
Currently we have stopped Andy being
on an elimination diet and put him on a steroid medication that protects his oesophagus
whilst we try and get his body to tolerate more foods. We mix the steroids
with apple sauce and make it into a slurry that he has every night. He also has
to have a high calorie drink twice a day to try and get him putting on weight
to meet his growth potential, as the specialist likes to tell us.
There is no cure for EoE. He will not grow out of it. He will always have it, but it can go into remission once his levels are reduced below 15 eosinophils (per high-power field). We have not yet reached this level and we never know if he will, but we are at a point where we believe we have found his trigger foods as such and have his symptoms somewhat under control. We know Andy is one of the lucky ones with EoE, he can eat foods, some other kids aren’t so lucky and have feeding tubes as a result.
This is our why. We do our ‘Team Andy’ fundraising drives, share Andy’s story and posts, in the hope that we can raise awareness and funds to aid in research projects to learn more and as a result, help others with this disease.
Story shared by Kristin (Andy's Mum); February 2019