More on KentOnline
More on KentOnline
A mother wants to warn other parents about a little-known condition that has struck down her own child.
Alfie Rose, just 22 months old, has nephrotic syndrome, a rare type of kidney disease.
It means he’s unable to process proteins, which then leak from his blood into his urine, resulting in swelling to the limbs and face.
His mum, Ellen Ridley, of Merton Road, Bearsted, said: “I first noticed something was wrong just after Christmas. Alfie started getting puffy around the eyes. Then his ankles were swollen.
She took him to her GP “five or six times”, but they diagnosed a possible allergic reaction and prescribed anti-histamines.
Miss Ridley said: “I did the things you would for an allergy – changed his bedclothes and sent the dogs away to stay with my mum. But he didn’t get any better.”
She went back to her GP, who thought he might have some form of conjunctivitis and prescribed eye-drops.
Meanwhile, Alfie’s weight ballooned from 11.6kg to 16kg because of the retained liquid.
Miss Ridley said: “Alfie was so bad I took him to A&E. They did a simple urine test and diagnosed nephrotic syndrome the same day. He has been on steroids ever since to control his symptoms.”
The danger is that internal swelling can compress the body’s organs and there is also a lowering of resistance to infections.
Miss Ridley said: “I don’t blame the doctors for not recognising the problem.
“If it’s something you’re not familiar with, you wouldn’t think to test for it.
“But actually the urine test is so easy to do. They should be carried out far more commonly.”
"I don’t blame the doctors for not recognising the problem. If it’s something you’re not familiar with, you wouldn’t think to test for it" - Ellen Ridley
Miss Ridley now tests Alfie’s urine twice a day, and takes him to hospital if the protein level gets too high.
Alfie, whose older sister, Jamie-Leigh, is unaffected by the syndrome, is to have further tests at St Thomas’s Hospital, London, as there are a range of possible triggers.
Miss Ridley said: “I know a lot about it now, but before I’d never heard of nephrotic syndrome.
“There’s no UK charity to support families and very little information out there.”
She launched an online petition, seeking to make urine tests routine. Visit www.petitions24.com/urine_tests_on_gp_visits
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