Helping children with a rare syndrome

A Cork mother of five, Elaine Rhys-Davies, has nursed her children through countless flu viruses and bugs, so when her five-year…

A Cork mother of five, Elaine Rhys-Davies, has nursed her children through countless flu viruses and bugs, so when her five-year-old daughter, Naomi, developed a fever she initially took it in her stride.

Elaine made the decision to bring Naomi to hospital when her condition started to deteriorate. She was startled to be told the child had contracted Kawasaki syndrome, a rare inflammatory disease which can cause severe cardiac problems.

"It was absolutely terrifying. My daughter was pumped with massive doses of aspirin to avoid a heart attack. She was vomiting and severely dehydrated," Elaine said.

Kawasaki syndrome primarily affects infants and young children and was originally described in Japan by Tomisaku Kawasaki in 1967.

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The syndrome is characterised by a fever which does not respond to antibiotics. It is associated with a rash, swollen lymph nodes and red eyes, lips, throat and tongue. About 1 per cent of cases die of the disease and its complications.

The most frequent complication is coronary artery aneurysms (ballooning out of vessels in the heart).

Preventive measures are unknown, while recurrence of the illness is extremely rare. Only a handful of cases of Kawasaki syndrome are diagnosed in Ireland annually.

Eighty per cent of cases involve children under four. Early recognition and prompt treatment of the acute syndrome are critical.

Unfortunately, the current definition of the syndrome is based on signs and symptoms which also occur in other illnesses. This can result in diagnostic dilemmas, particularly in atypical cases.

Children such as Naomi generally have a full physical recovery from the syndrome, but it can leave a psychological mark on older children.

Naomi spent two months in an isolation ward in hospital before returning to her home in Carrigaline, Co Cork, to recuperate.

Her mother said it was important to allow Naomi to return to normal life as soon as possible.

"She went back to school for half-an-hour or an hour, whatever she could cope with. Her teacher was wonderful, so that helped. It was tempting to wrap her up in cotton wool but I knew that wasn't healthy."

Naomi, now eight, doesn't have any side-effects following her illness three years ago.

"She is a fighter. Psychologically, you wouldn't think that anything had happened to her", her mother said.

Elaine was recently contacted by the mother of an 18-month-old Cork child who contracted the syndrome before Christmas. The infant is currently recovering at home following lengthy hospital treatment.

The mother, who declined to be identified, said the whole episode made her feel helpless and frustrated.

"The doctors were great, but this is a syndrome where there is no known cause," she said. "Where did it come from? I had never heard of it and then all of a sudden I had a very sick child."

Parents who have gone through the "Kawasaki experience" with their children are often keen to share their stories and experiences. An English woman, Ms Sue Davidson, set up a Kawasaki support group in 1994 from her home in Coventry and now has over 1,000 members who swap information and advice.

Ms Davidson established the group two years after her son, Gary, developed Kawasaki syndrome.

The child wasn't diagnosed until day 16, and complications left him with aneurysms and occasional angina.

Children who have developed coronary artery aneurysms may suffer long-term consequences of the disease.

Severely affected children may require long-term treatment with drugs, such as aspirin, to reduce the risk of clots forming within the damaged coronary arteries.

A number of Irish parents of children who have been affected by Kawasaki syndrome have expressed interest in setting up a support group comparable to the organisation in England.

Ms Caroline Carolan, a mother of a three-year-old girl who was treated for Kawasaki syndrome at Our Lady's Hospital in Crumlin late last year, has urged parents who wish to trade experiences to contact her in confidence.

Lynette Carolan is recovering from her illness, but her mother says she experiences serious dips in energy.

"It is a very strange illness. She has her good days and her bad days but she is still not the child I had. I would like to try and set up a group to offer support to other parents," Caroline said.

Parents often felt isolated when their child was diagnosed with the syndrome as the condition is so rare.

Parents interested in discussing Kawasaki syndrome with other families and possibly setting up a support group should contact Caroline at (087) 2455613.

Gearoid Moynihan's five-year-old daughter was diagnosed with Kawasaki syndrome in mid-January. She responded well to treatment.

Gearoid, from Kildare, said prompt diagnosis was crucial as it helped speed up the recovery process.

"She is out of hospital and her medication has been reduced considerably. Early diagnosis seems to be so important," he said. Gearoid can be contacted at (086) 8238906.