Our little boy has recently been diagnosed with eosinophilic esophagitis so I thought I would put together a post about what it is, what causes it and how it can be treated. I’m not medically trained, so this post is simply based on what I have read and what we have experienced so far. For any medical advice on eosinophilic esophagitis please speak to a trained professional.
What is Eosinophilic Esophagitis?
Eosinophilic esophagitis, or EoE, as it is more commonly known, is a chronic inflammatory disorder that affects the oesophagus – the food pipe. It’s an allergy which affects the oesophagus, causing it to produce lots of white cells called eosinophils. It affects different people in lots of different ways, but common symptoms include difficulty swallowing food, chest pain, heartburn, and food impaction (which is where food gets stuck in the pipe). Children who suffer from eosinophilic esophagitis often find it difficult to eat and don’t gain weight at the same rate as their peers.
We first noticed that there was something different about Austin when he started being sick quite regularly. At first, we put it down to him being a baby and babies are quite often sick. But as he got older (he’s almost four now) he continued to be sick and it was more and more regularly. Some weeks he would be sick several times over the course of a few days. As he got older and we’d got used to him being sick, we noticed that he had a very tell-tale cough that used to start before he was sick. It was quite a dry cough that sounded like something needed to clear. More often than not, once he was sick, the coughing would stop. We also noticed there was a pattern of the coughing and sickness depending on what he was doing. The sickness nearly always occurred when he was sitting or laying down. We’ve had so many sick episodes at night where he’s been sick in a bowl or his bed, we’ve also had quite a few where he has been sick whilst in his car seat or at the dining table. He is rarely sick when he is standing up or moving around and often we can calm the coughing by getting him to stand up and move around.
How is Eosinophilic Esophagitis Diagnosed?
We first went to the doctor about Austin’s sickness when he was around two and a half years old. We were referred to the gastro department at our local hospital and they set out a plan of tests and scans they were going to do to see if they could identify what was causing the sickness. He had a number of blood tests, completed a 7-week dairy-free trial, he was scheduled for an MRI and a CT scan – neither of which were successful as they do it under sedation in our local hospital and he was very freaked out during the scans.
The last procedure was an endoscopy. This is where a thin, flexible tube with a camera is inserted into the oesophagus and the lining of the oesophagus is examined. This procedure is done under general anaesthetic and tissue samples, known as biopsies are taken for further examination. Immediately after Austin had had his endoscopy, the doctor spoke to me and said that he could visually see a large number of the white cells, known as eosinophils but he wanted to wait for the results of the biopsy to confirm this. We waited just a couple of weeks before we were called by the team there who confirmed the presence of a large amount of eosinophils, giving him the diagnosis of eosinophilic esophagitis.
How Is Eosinophilic Esophagitis Treated?
Currently, there is no cure for eosinophilic esophagitis, but it can be treated in several ways. For children, the best course of action is to treat it by diet. In most cases, eosinophilic esophagitis is caused by an allergic reaction to a specific food. Unlike a typical allergic reaction, which shows up on the outside of the body in the form of a rash, hives or a terrifying anaphylactic shock, Austin’s allergic reaction shows up in his oesophagus. So the best course of action is to eliminate food groups and then have a look down his oesophagus with another endoscopy. He is currently trialling a wheat and milk-free diet and is due for another endoscopy in just over 2 months.
Complications of Eosinophilic Esophagitis
There are so many complications of this horrible disease. The first is that it is diagnosed and monitored by regular endoscopies. To an adult, this is a horrible experience to have to put up with regularly, but to a child, this is even worse. The team at the hospital were amazing and made Austin’s first experience of this much less scary than it could have been. As a parent, you feel so helpless watching your child being put under general anaesthetic he was very upset when he came around and he wasn’t sure where he was. The more times we have to do this, the wiser he’ll get about it and I don’t want him to dread this.
The other reality of this is that we might have to spend a very long time trying to find out what the root cause is of his eosinophilic esophagitis. The dietician who is looking after Austin said that many of her patients’ triggers were wheat and milk, so this is why they start with these two as the first food groups to eliminate, but there’s no guarantee that it will be one or both of these foods and we might have to go through a number of eliminations before we find the cause. Also, there’s a thought that’s playing on my mind that I don’t really want to address, what if his trigger isn’t food? There have been cases where it is an airborne allergy which can’t be eliminated like food. But I’m not going to give myself a headache thinking about this yet as we are so early on in our EoE journey. Long term, we have to get on top of what’s causing the Eosinophilic Esophagitis as over time his oesophagus may become damaged and he may struggle to eat properly if he has permanent damage. I am glad I was persistent in terms of following up with the doctors and hospital regularly so we got to the diagnosis as quickly as we did. I have read that often people suffer from this for years, struggling to eat and it’s only when they have regular food impaction that they seek help and get their diagnosis much later on in life. As Austin is still only three, we have caught this quite early and we can strive to identify what causes his flare-ups and hopefully give him the best shot at a normal life without any complications from this. Reading about this on the internet has given me a lot of insight into this disease and I have connected with other people who have children with it too. We are in such an early stage, so all we can do is persevere and stay positive. Wish us luck!
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