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Thriving with Eosinophilic Oesophagitis
This is a guest post from Robyn Meynell from Wellington, New Zealand. Robyn is a mother of three; one of which suffers from a rare condition called Eosinophilic Oesophagitis and Duodenitis. Today, she tells us of how life has progressed for her son since he experienced his first anaphylactic reaction as a five week old baby.
Robyn’s son, Regan, experienced his first anaphylactic reaction when he was just five weeks old. Over the months that followed, Regan’s body reacted and rejected nearly everything he was given.
Regan’s parents watched helplessly as their son screamed and writhed in pain. It was only when Regan was four years old that he was able to finally tell his parents that his chest hurt every time he ate and swallowed something.
At just five years of age, Regan has his first of many gastroscopies under general anaesthetic. It was then that he was diagnosed with Eosinophilic Oesophagitis and Duodenitis. At this time, Eosinophilic Oesophagitis and Duodenitis was a very rare condition that medical practitioners knew little about.
Robyn’s story was first published on Stuff NZ in November 2014, with the aim of increasing awareness for Eosinophilic Oesophagitis and Duodenitis. Read her original story HERE.
What follows is Robyn’s personal account of her son’s journey.
EOSINOPHILIC OESOPHAGITIS AND DUODENITIS
I will abbreviate Regan’s condition as EE and ED (short for Eosinophilic Oesophagitis and Duodenitis)
Regan’s EE and ED is lifelong, but we received good news two years ago that the eosinophil levels are in ‘remission’ after a routine gastroscopy and colonoscopy. It took 7 long years from diagnosis to reach remission level; and involved removing trigger food groups from his diet. Regan is still on elemental formula, to provide nutrition that he needs to thrive, which he will be on for life. We were able to wean him off the Flixotide (swallowed steroid).
Even though Regan is in remission, he still has eosinophils present in his oesophagus; but not at a level that it would cause complications like food impaction or scarring of the oesophagus. His duodenitis is free of eosinophils.
We are still under the care of the Starship gastroenterologist, who makes regular visits to Wellington Hospital; along with the Wellington Hospital Paediatrician and Dietician just for his EE/ED.
Roll on the dreaded puberty that medical professionals will often tell parents, “It is the phase where it will either get better or it will get worse.”
Regan is now 14 years old.
Two weeks before his 14th birthday, Regan told me what no parent of an EE/ED child wants to hear – “Mum, my chest hurts when I swallow.”
I played the wait and see game to see if it would resolve itself; but it only resulted in Regan dropping even more safe foods from his diet. He was coming home from school and showing no interest in eating afternoon tea, which is not normal behaviour of a 14 year old teenage boy!
Regan hasn’t eaten breakfast for 9 months now. I wasn’t concerned because it was around that time that his Dietician increased his formula intake to ensure his body would cope with the accelerated puberty growth spurts. This just gives you an idea of how much he is eating in a day.
I sent a quick email to the Starship Gastroenterologist to update him on the happenings.
He came down to Wellington, in between his usual 3 monthly scheduled appointments, to see Regan. It was also the same time that he presented a talk at the University of Otago, School of Medicine about EE.
He shared some of his talk with me during Regan’s appointment, and came up with a plan of trying to introduce more food into Regan’s diet. The Gastroenterologist said that that his food restrictions would become a ‘social nuisance’ in the future; especially since Regan has developed food aversion issues along the way.
Regan will be having a gastroscopy under general anaesthesia to have a look what is going on inside; and recheck the EE/ED levels.
We also discussed what will eventually happen with Regan, in the future, in terms of Specialist Care as he is going to be moved onto the Adult Gastroenterology / Immunology Team when he turns 16 years old.
While it is a very scary thought, he reassured us that the Adult Team are very good.
Regan has other multiple medical conditions to deal with on top of the EE/ED. He has come a long way in learning how to manage his conditions and adapt in the wider world outside of home.
THRIVING IN SPITE OF HAVING EOSINOPHILIC OESOPHAGITIS AND DUODENITIS
Understandably, young teens living with such a rare condition can find it difficult to cope. I’m proud to say that Regan copes very well in social situations.
There are times where he is not able to eat anything at all, but it doesn’t bother him seeing his peers enjoy the food around him. In fact, he is quite happy to drink a carton of Elemental 028 formula in front his peers, as he knows he needs it to keep going.
Regan doesn’t see food as being an important part of having a good time with his friends and family.
For a child with multiple food allergies and intolerances, Regan is actually quite a good cook in the kitchen which is an important skill to have to be independent.
Knowing he is not embarrassed to tell others that he cannot eat what is on offer, and being able to seek out safe food if there are several options to choose from, is reassuring for us as parents. We take great comfort in knowing that he will be okay in the future.
Reflecting back over the years, when Regan was first diagnosed with EE/ED, and where we are today – I am happy to say that things do get better; and you do get to that light at the end of the tunnel and even beyond!
It is very reassuring that Pediatricians are now very aware of EE and do not hesitate to do a quick gastroscopy to confirm symptoms in any baby / child that presents with EE symptoms, not easily resolved with simple reflux medications.
Because Regan was the first pediatric case in Wellington Hospital with EE/ED, I didn’t know where or who to turn to for advice. No one at all, including my own Family GP, knew what EE/ED was.
With pediatricians and dietitians having learned so much over the last 9 years, I feel such a relief that parents will no longer have to feel alone. I know that I can personally help these parents via support groups.
ABOUT ROBYN MEYNELL
Robyn is a working mother of three children. She is also a Brownie Leader with Girl Guiding New Zealand; empowering young girls to become aware and independent. Learn more about Girl Guiding New Zealand HERE.