Son’s rare
Imagine your child being disease so unusual no o Health Editor LAURA MILN
ALMOST a year ago I was getting my three-year-old son Sam ready for nursery school one morning when I happened to reach down to ruffle his hair and felt a large lump on his scalp. I assumed he must have bumped his head.
As it was hidden by his mass of curls and didn’t seem to be causing him any pain, I thought little more about it for a week or so. Yet it didn’t go away, so I took him to see our GP who assured me it was probably nothing to worry about but requested an ultrasound scan to be on the safe side.
It took another four months, countless sleepless nights and a series of X-rays, ultrasound, CT and MRI scans as well as a biopsy of the lump, before my little boy was finally diagnosed with Langerhans’ cell histiocytosis (LCH), a rare cancer-like condition which causes certain immature white blood cells to mutate and attack skin, bones and organs.
In Sam’s case, a 5cm-wide tumour had formed inside his skull and eaten its way through the bone right down to the covering of his brain before it was discovered. Serious forms of the disease can be treated with a combination of chemotherapy, steroids and/or surgery. Although the condition has a high survival rate, the effects can be horrific.
Langerhans’ cells cause bones to fracture and disintegrate. It can spread to organs, damaging the liver, spleen and lungs, cause deafness, attack the pituitary gland, leading to permanent hormone shortages, and cause neurological damage. The cause remains a mystery.
Suffice to say, LCH is incredibly unusual. About 50 children in the UK develop it each year so most GPs won’t ever encounter a case in their career. Although adults can also get LCH, it is predominantly found in children and tends to be more common in boys than girls.
Knowing how unusual it was made the diagnosis almost impossible to take in. How could my lively, cheeky little boy have this terrible disease and yet seem so well? Despite being ah 10 no ea ar inf ba wa im ve Re ar th inv co fee ar wh ar ha ha un lit an dis po in