Mum’s warning after her baby had rare disease
mark.smith@walesonline.co.uk
A MUM has warned other parents to be on the lookout for a fever, rash and swollen arms and legs in their babies after her son was struck down with potentially fatal Kawasaki disease.
Kady-Laura Alldis said her 11-weekold son Rowan Buckley started deteriorating on Thursday, November 7, and was taken by ambulance to A&E on the Sunday.
When he failed to respond to antibiotics over several days and developed a red rash on his body, he was given a lumbar puncture which identified a serious infection.
It was eventually discovered the tot had Kawasaki disease, a condition particularly rare in young babies in which blood vessels throughout the body become inflamed.
Kady-Laura, from Caerphilly, said: “No-one knows anything about Kawasaki disease and there isn’t enough information out there, but it’s becoming increasingly common and more children are being diagnosed with it.
“Although it’s more common in underfives, it can affect children of any age. Parents need to know about this.”
Kady-Laura, 23, said Rowan started getting “a bit grumpy” following his immunisations and was sleeping far more than normal.
“He didn’t wake up for his bottles, and he cried when we tried to move him or pick him up to give him cuddles,” she added. “Then slowly he started not responding to us. His temperature was up and he just wasn’t himself.”
When Calpol failed to bring Rowan’s temperature down, Kady-Laura and her partner James Buckley called the NHS 111 service for advice.
After explaining his range of symptoms, an ambulance was called out to take Rowan to the Royal Gwent’s emergency department in Newport.
Kady-Laura, who works as a nursery nurse, said doctors struggled for several days to find out what was wrong with Rowan.
Then on Monday, November 11, 24 hours after his initial admission, the poorly child started coming out in a rash.
“We thought he had meningitis, and he was given antibiotics,” she added. “But he was getting worse as each day passed and they couldn’t understand why.
“His hands and feet were red and swollen, his eyes went red, puffy and very gunky, he had a feeding tube in and went on different machines to keep track of what was going on.”
When Rowan didn’t respond to the medication, a lumar puncture was carried out which confirmed that infection was present in his system, although medics could not identify where.
“He had head scans, heart scans, regular bloods taken and urine samples,” added Kady-Laura. “His little body got so tired and worn out they could no longer get cannulas through his veins. He ended up having one through a vein in his head.
“He was so weak and lacking in energy that he could barely cry.”
Thankfully, on the fifth day of being in hospital Rowan was diagnosed with Kawasaki disease, also known as mucocutaneous lymph node syndrome.
The disease causes the blood vessels to become inflamed and swollen, which leads to complications in the heart in a quarter of all cases. If the condition goes untreated, complications can be fatal in about 2-3% of cases.
“It affects almost every system in the body, but there is no accurate or diagnostic test for it. This makes it difficult and frustrating for parents to fully understand,” said Kady-Laura.
“Many questions are left unanswered because there isn’t enough information out there, and medical practitioners have little understanding of it.”
Within two to three days of the diagnosis being confirmed and the appropriate medication administered, Rowan’s rash had completely disappeared and he was discharged on November 18.
“In the last couple of days he’s started to smile again and become his normal self,” she added.
“We still have to give him medication and his heart and kidneys will continue to be examined to ensure he isn’t affected long-term. But we were just delighted to come home.”
Kady-Laura heaped praise on staff at the Royal Gwent Hospital for caring for Rowan so well.
“We are lucky we got him seen when we did.
“Even as a first-time mum I knew something wasn’t right. I trusted my gut.”