MealTIMES are predictable affairs for 19-month-old Douglas Husband. The only food his mum Beverley Ward has found that he can tolerate is butternut squash and potato. Other food makes him scream in pain.
Douglas suffers from eosinophilic colitis, a rare condition where too many white blood cells are produced in his intestine. As a result the cells designed to protect his body actually attack it.
Douglas had a normal, natural birth and, even though he arrived into the world with the cord around his neck and needed resuscitating, he made a quick recovery and was soon sent home to join the family in Sheffield
Initially when he went home he seemed fine but he was unable to settle easily to sleep and after a few weeks he developed a cold and started choking, going limp and blue in his mother Beverley’s arms. Her three-year-old daughter had been very settled as a baby and Douglas was different.
“The day Douglas went blue and limp in my arms was the most horrendous moment of my life, I thought he was dying.” says Beverley.“I called 999 and within minutes the paramedics were at the door. He came round when they arrived and we took him in the ambulance to the Children’s Hospital, Sheffield”
Douglas was initially diagnosed with bronchiolitis; however he didn’t appear to have the same symptoms as the other babies on the ward. He was discharged and Beverley continued to breast feed him.
“Once home, he continued to choke at feeds and his breathing always seemed laboured. It turned me into a nervous wreck. Eventually at four-months-old he was diagnosed with gastro oesophageal reflux disease.
Despite this diagnosis, which is a result of stomach acid leaking back in to the oesophagus, Beverley was convinced that they still didn’t have all the facts.
“I kept going back and gave doctors all the details I could. We tried so many different things, cutting out dairy from my diet and giving him strong acid suppressants but nothing seemed to make any difference. He was generally a happy-go-lucky little chap until I tried to feed him and he’d sob through his feeds. And he seemed to be waking up all night screaming in pain. It seemed that his bowels were causing him trouble as well”
When Douglas was five months old, Beverley decided to video him feeding and showed it to the hospital.
“I got an appointment with one of the specialists at the Children’s Hospital, Mike Thomson, who told me to stop breast feeding him and put him on to Neocate, a special formula used for allergic babies. Unfortunately he didn’t get any better, he was waking up to 15 times a night.”
Dr Thomson arranged for Douglas to have a colonoscopy and endoscopy as well as a pH study to measure the extent of his reflux.
“The cameras showed that his colon was lined with tiny ulcers and the biopsies revealed that he had abnormal concentrations of eosinophils (white blood cells or allergic cells) in his intestines. We finally had a diagnosis of eosinophilic colitis.
“He was given anti-histamines and slept through the night for the first time. Now at 19 months old we are still learning about the condition and what works for Douglas and what doesn’t.
“If he has an allergic reaction to food he scratches at his face, screams through the night, is bad-tempered during the day and suffers with severe constipation and diarrhoea. He can also come out in hives and it makes him quite ill. So far he can only manage to eat two foods, butternut squash and potato. It is really sad that at a time when we should be excitedly trying our son on lots of new foods that we are so scared of the reaction he might have. Douglas is a happy little boy and now that we are starting to slowly understand his condition and find out more about it he is usually able to sleep better and do more of the things that he should be doing. We’ve tried a range of drugs. Some of them have helped him but some have made his condition much worse as he reacts to the ingredients in the medicines in the same way as he reacts to food and can have different allergic reactions to things like colours and flavourings. We have to watch him closely as he mixes with other children to ensure that he doesn’t eat anything that will make him ill. It can be heartbreaking to have to keep saying ‘no’ to him.
“Over the past few months Douglas seems to have caught a lot of bugs and seems to get them far worse than other children do which is a common problem with children who have eosiniphilic gastro intestinal disorders.
“He is now on a new drug which seems to have stabilised him a little but he is still only eating potato and butternut squash. Like all children he can be faddy; it’s a real worry when he seems to have gone off one of his foods.”
Mike Thomson, specialist from the Children’s Hospital, Sheffield, said: “Children like Douglas often go a long time without being recognised as in some ways this is a relatively new set of diseases to general practice and paediatrics alike. While it will usually resolve with time it may take many years and other related problems such as eosinophilic oesophagitis, which is likened to eczema of the gullet, can ensue and last into adulthood. We are fortunate that a number of parent-led groups are beginning to flag this set of problems up to the wider community. but it is our responsibility as health care teams to recognise these conditions early and act appropriately with a referral to a paediatric gastroenterology department.”
Beverley adds: “It has been a long hard journey to get to where we are but we are determined to learn more about this little known condition and to raise awareness so that children are more easily diagnosed.”