Tell us a bit about yourself…..
Hi, my name is Janet. I have 4 children, 2 boys and 2 girls and I am married to Andy. Three of my kids are grown up now and aged 24, 22 and 21, my youngest daughter still lives at home along with my youngest son who’s 14, he’s the one with EoE. Both boys are very atopic with allergies and asthma and my younger daughter suffered anaphylactic reactions during puberty but not since. We live in a small rural village near Haworth in West Yorkshire. I was a sewing machine machinist before my children were born and stopped work to raise thm, then went on to become a childminder for several years. I have volunteered in pre schools and primary school too over the years and work part time for my husbands engineering company too.
What is Eosinophilic Oesophagitis?
EoE is an Eosinophilic disorder, one of several conditions affecting the gastrointestinal tract known under the term EGID – Eosinophilic Gastro-Intestinal Disorders. Basically there should be n0 eosinophils (a type of white blood cell ) in the oesophagus. With EoE eosinophils build up in the oesophagus over time attacking the body rather than defending as they do in other areas, causing swelling and damage deep in the tissue layers which in turn causes symptoms. Certain foods, or in some cases even environmental factors like moulds or pollens can cause the eosinophils to build up and cause a flare up of symptoms.
In babies and children symptoms can include:
- Pickiness/food refusal
- Gagging while eating
- Failure to thrive/weight loss
- Tummy cramps
- Persistent cough
- Reflux that doesn’t respond to high dose reflux medication
In older children and adults as well as the above signs and symptoms they may complain of:
- Chest pain
- Food sticking in the oesophagus as it goes down
- Feeling of a lump in their throat
- Needing to drink after every bite of food
What symptoms distinguish EoE from other conditions?
I would say the most obvious symptom from my experience with EoE would be choking and vomiting when eating. If food gets stuck and won’t go down it has to come back up. Many babies and toddlers may refuse food or gag on lumps but if it becomes a common theme along with irritability at meal times and persists as they grow then further investigation should take place as to the reasons why. Also some EoE kids will take a drink after every bite of food to help it down, or refuse to eat unless they have a sauce, Mayo etc to dip into which can help food down.
As my son got older he used to say ‘heart attack’ and double over clutching his chest, this was oesophageal spasms which can be very painful and common with EoE. Cutting food up into tiny pieces, chewing for a long time, taking ages to eat a meal are again all possible signs. Also kids may alter their eating habits by refusing foods they know are going to cause trouble swallowing like meats, bread, pasta – anything which is stodgy or takes a lot of chewing.
Tummy cramps were a common symptom with my son too, a feeling like someone is squeezing his insides was the way he has described it to me, or sometimes it would be sharp spams like pulsing pain just above his naval.
Tell us about your road to diagnosis
It was a long one !
I believe looking back that my son displayed EoE symptoms from very early on, possibly even at just a few weeks of age when he developed an all over rash. And he used to choke while feeding, had horrendous hiccups, and wind, brought up a lot of breast milk but despite this reached his milestones and was putting on weight. He seemed to be poorly a lot and got everything going but took longer to recover.
When we started weaning he gagged on foods and as he got older would often just refuse to eat at all, luckily he was still being breast fed so had that at least to sustain him. He started to look skinny at around 2 and this was the time with him that food became like a battle. He would often vomit while eating or soon after, but would appear OK again soon afterwards leaving us confused as to why. As he also had asthma and egg allergy that was thought by doctors to be the probable cause. He got very bad wheezing episodes especially when he had a cold and needed nebuliser treatments.
Along the way we saw many paediatric consultants, including allergy, ENT, asthma specialists, heart doctors (he also used to get unexplained palpitations ), and Gastroenterologists. He has had 2 barium studies, ECGs, many blood tests, and allergy tests.
He was diagnosed aged 12 (almost 13) in Jan 2013 with EoE and chronic gastritis in his stomach after the results of a endoscopy and biopsies when we saw a Gastro doctor who had heard of EGID and suspected EoE could be the reason for all his symptoms. I had been suspecting it too for about 18 months after some research.
How is your child’s condition managed?
With great difficulty would be the answer to that. EoE is a tricky condition to manage and finding the triggers can be difficult. And each child with the condition seems to react to different stimuli and respond to different meds and ways of treating it.
I have kept food diaries for years and still I am non the wiser really. We decided given my sons age to try meds to control the inflammation to begin with at least. He was started on a low dose of swallowed flixotide an asthma inhaler which is swallowed down rather than inhaled. Also he takes a daily antihistamine and nightly steroid nasal spray, and continued with Omeprezole a reflux med. We have had to double the dose of swallowed steroids recently and have also tried Nalcrom and now Ketotifen which are strong antihistamine/mast cell stabilisers to reduce allergic response. But we are looking at removing more foods now since he has had a bad few months symptoms wise.
What would you like to say to a parent seeking diagnosis?
I would say above everything else to go with your gut instinct, mums know their children the best and see them every day unlike the doctorrs who only get a snap shot into our lives. I knew something wasn’t adding up with my son which is what lead to me joining various forums and researching reflux and EGID as those were the 2 that kept coming up on Google when searching symptoms.
Can you suggest some useful links and resources?
The following EGID charities are very useful for support and looking up symptoms and treatment options:
EGID Facebook groups
- HASED – Help and support for eosinophilic disease – UK
- Eosinophilic Gastrointestinal Disorders Australian Support Network – ausEE – Australia
- Eosinophilic Esophagitis – US
- Eosinophilic Family Support Network – US
Here’s a link to my blog on us and EoE:
- FABED. [Accessed November 2014]
- EGID Explained Brochure
- What are Eosinophilic Gastrointestinal Disorders? [Accessed November 2014]
- Eosinophilic Oesophagitis. [Accessed November 2014]
- Eosinophilic Oesophagitis (EoE). [Accessed November 2014]