Mum in a million: Caring for a son allergic to food

Diane McKew. Photo Colm Lenaghan/Pacemaker Press
Diane McKew. Photo Colm Lenaghan/Pacemaker Press

Most children dream of tucking into a slice of chocolate cake, delving into bags of sweets, or munching on a burger and chips.

But when Josh McKew from Tandragee was growing up the luxury of sweets - and indeed all food - was just a dream.

The now 17-year-old suffers from a rare and incurable bowel condition called eosinophilic colitis which makes him allergic to everything he eats and meant he had to rely on a nasogastric tube to provide him with nutrients.

Esinophilic colitis is caused by the body producing too many of a type of white blood cells in his oesophagus and colon.

The cells’ job is to kill bacteria and parasites, but the autoimmune condition causes them to react to foods, which in turn produces toxins and causes inflammation.

It is an extremely rare condition affecting as few as one in 10,000 people and, because of this, Josh’s parents Dianne and Jonathan had the frustrating and unenviable battle of trying to get a diagnosis for their precious son.

Reflecting on those awful early days Dianne says she knew ‘‘from day one’’ there was something wrong with her newborn baby.

‘‘He wasn’t feeding properly - he just wasn’t what a normal baby should be.’’

Dianne’s instinct told her her little baby wasn’t well, but it would take almost four years and countless, fruitless visits to doctors and hospitals before she and her husband would discover the cause of Josh’s decline. ‘‘We had gone up and down the country and paid so much money for consultants and doctors to look at Josh, but they kept saying there wasn’t a whole lot wrong with him.

‘‘We were told he was a bit constipated and just to treat that with some pure orange. But Josh was getting sicker and sicker. He wasn’t thriving and he was losing weight.’’

The eosinophilic colitis caused Josh horrendous pain to the point where he would end up writhing in agony.

‘‘He cried 24 hours a day,’’says Dianne.

‘‘And he had fits - they weren’t epileptic fits, but more to do with the pain his body was in. When he was in the fits, he was so sore he would have been banging his wee head off the floor or he would have been completely rigid - he wasn’t with you at all - he was completely out of it.’’

Dianne says Josh had up to six of these awful fits a day.

And whilst Josh got sicker, so too did Dianne, spiralling into the dark world of postnatal depression.

‘‘I would have locked the doors and pulled the curtains and wouldn’t have wanted to see anybody,’’ she says remembering that unspeakable time.

‘‘I’m great now, but the scars are still there, they are never going to go away.’’

Dianne believes her depression was exacerbated by the fact that no one believed her son was sick.

‘‘I probably got sicker because I was told there was nothing wrong with him and no one was listening to me.’’

Josh was so sick, there were times, Dianne admits, when they feared they might lose him.

‘‘It was something that went through my mind every day,’’ she says.

‘‘There was never a light at the end of the tunnel - we could never see that.’’

Dianne says she and her husband Jonathan rarely slept and things got so bleak she eventually had to give up her job in the public sector to look after Josh.

Thankfully the turning point in their fortunes came when Josh was referred to paediatric consultant, Dr James Hughes in Newry’s Daisy Hill Hospital

‘‘I have a very strong faith and I believe that that was God’s will, giving us Dr Hughes,’’says Dianne.

‘‘When he saw Josh he said ‘I don’t know what’s wrong with him, but I do know he’s sick’. And for someone actually to tell me that - that was half my battle because someone was actually believing me.’’

Josh was admitted to the Royal Belfast Hospital for Sick Children and underwent numerous tests and biopsies, all of which came back clear - but he was still getting sicker.

‘‘No one could understand what was wrong with him,’’ says Diane.

However, she had a feeling that what Josh was eating was somehow involved in his illness, so she kept a food diary.

‘‘By looking through the diary Dr Hughes could see that certain foods Josh was eating were triggering the fit episodes. Basically we could see from my food diary that when Josh ate nothing, he was better, but once he ate that was when he started to get so sick.’’

Then, in what Dianne describes as ‘‘one of our last tries’’, the family finally got the diagnosis from a specialist at the Edinburgh Royal Hospital.

‘‘To get that phone call from Dr James Hughes and to find out what was wrong with Josh was such a relief,’’ says Dianne.

‘‘We then set off, mum, Jonathan, Josh and I to Edinburgh hospital to meet the consultant.’’

At that time Josh was the only child diagnosed in Northern Ireland with eosinophilic colitis

‘‘We didn’t have a help group, we basically went through this on our own - the only person we did have to ring and help us through was Dr Hughes - he wasn’t just our consultant, he’s now a friend. The medical team we have, Josh’s dietician Ashley Moffett, our GP, Dr Karen Webster, and, of course, Dr James Hughes who never gave up on us or Josh, are fabulous. So too are my mum and dad, Ann and Sammy Gillis.

After the diagnosis, Josh was fitted with a special feeding tube.

‘‘He came off all food and was put onto a very strict elemental diet, which meant that they were going to eliminate everything and start from scratch to see what his body could tolerate.

‘‘But he still wasn’t getting better, so then they diagnosed him with allergetic enteropathy, which basically means his body can tolerate no food - so they started him on rice and potatoes and then eventually and intermittently we added certain things in.’’

When he started primary school he still had to be tube fed, which meant twice daily trips to the school for Dianne. And for four years he lived on mince and potatoes.

‘‘I had to go down twice a day, every day to tube feed him, and he would have had to come home so many days of the week.’’

Dianne says Josh was so sick, but no matter how ill he was he still loved going to school.

‘‘He had to go to school every day - you daren’t have stopped him from going,’’ she laughs.

Josh eventually had a permanent peg tube fitted into stomach and he started to get better from that. At secondary school the tube feeding stopped.

‘‘He got to the point where he wanted his life to be as normal as possible.

‘‘I would have fed him enough to get him in through school and then he would have got more when he came home.’’

The medical profession couldn’t give the McKew family any guarantees that any other children born to them would have the condition.

Dianne says: ‘‘Jack was born six years after Josh, he’s now 10, and he doesn’t have it and then wee Harry was born another four years after that and he’s now six - and that’s when they told us there was a possibility Harry could have it. So it was nearly like a rollercoaster starting all over again. Harry does have a dairy intolerance, but we were on the ball straight away and he was taken care of straight away, but he doesn’t have Josh’s condition as such.’’

Josh is now a teenager and doing well; he loves driving tractors and quads round the family’s farm. He finished his GCSEs in June and is taking a year out

Diane says: ‘‘I’m not fussing. I’m letting him make his own decision because we nearly lost him. Whatever he wants to do and makes him happy, that’s perfectly fine.

‘‘He will always have the condition and he probably have times where he’ll relapse into being not well or being really ill, but Josh controls that now himself, as we do, with his food.’’

Against the backdrop of caring for her son, Dianne decided to get back into the workforce.

She set up a business three years ago selling Miglio jewellery from her home and is now one of the company’s top five sellers in the UK.

This indomitable lady has also raised thousands of pounds for Daisy Hill Hospital through coffee mornings and other charity events.

‘‘It’s the least we could do, because they have been fabulous,’’ she says.

But it’s her children who will always be number one in Dianne’s life.

‘‘My children are my world. I love being a mum. Looking at Josh now I don’t believe we’ve come through it, but any mum will do anything for their children - you won’t stop at anything.’’