Page last updated at 01:00 GMT, Sunday, 13 December 2009

'My son had multiple sclerosis aged five'

By Jane Elliott
Health reporter, BBC News

Sam Blyth
Sam suffered terrible headaches

When Sam Blyth lost his eyesight his mother felt her worst fears were confirmed.

For weeks she had been going backwards and forwards to the GP saying he was ill.

Sam complained almost constantly that his head hurt, but Sandra said no-one seemed to think he was as ill as she feared and put his increasingly distressing symptoms down to a heavy cold.

"He had a cold but as soon as that went he started complaining of headaches and was always pointing to the same place," she said.

Painful headaches

"Being a mum I knew straight away there was something wrong.

"He had never complained of a headache before and they just seemed so severe.

The specialist did say he has time on his side and if they get him started on the treatment then hopefully they can try to keep the MS at bay
Sandra Blyth

"The pain was so bad the headaches would wake him up during the night.

"I went to the doctor about four to five times and they said it was just his cold and sent him away.

"I said it was not normal."

On 3 March this year Sam became much worse.

"He started screaming that he could not see," said his mother.

"I took him to casualty, burst into tears and said: 'I think he has a brain tumour'.

"I said I was not leaving until I saw a paediatrician."

Nerve cells in MS
MS causes damage to nerve cells

The doctors took bloods and a CT scan and decided that an MRI (magnetic resonance imaging) scan was needed.

Sam was then sent from his home in Dumfries and Galloway to Edinburgh where doctors diagnosed a condition called acute disseminated encephalomyelitis (ADEM).

It is an inflammatory disorder, similar to multiple sclerosis (MS), but only strikes once, and up to 75% of patients make a full recovery.

"We were jumping for joy, it was a miracle, our darling boy was going to be OK and he would be with us forever," said Sandra.

Relapsed again

He was given steroids and recovered, but within months started showing worrying symptoms again.

At the age of just five the Blyths were told Sam had MS.

Dr Evangeline Wassmer, consultant paediatric neurologist at Birmingham Children's Hospital said a lengthy delay for a diagnosis, like that experienced by Sam's family, was not unusual.

"It is quite common that a diagnosis should take so long and that is because there are lots of other things that the MS can look like in children," she said.

"The criterion used in adults is not always as helpful in paediatrics.

"Paediatric MS is rare: we don't know the exact number of cases, but there could be about 45-300 children a year in the UK diagnosed with MS, probably on the lower side."

Dr Wassmer said delivering a diagnosis to the parents of children like Sam was always distressing.

It is thought that 100,000 people in the UK - about one in 600 - have been diagnosed with MS
MS affects more women than men (by a ratio of 3:2) with symptoms usually becoming apparent in young adults (between the ages of 20 and 40) even though a firm diagnosis might not be made for many years
The youngest known cases of MS are just five years old but it is relatively rare for children to be diagnosed, although this is increasing year on year

"We think the disability is a slower process for those diagnosed as children," she said.

"About 50% will need help with walking by the time they are 40.

"I find it devastating to tell them at 12 that by the time they are 40 they will have mobility problems."

Sandra said the whole experience had been bewildering.

"I never thought children got MS," said Sandra.

"I always thought it just affected adults in their 40s. I never thought he would have MS so soon or young, maybe when he was an adult but not at five.

"They don't know what his future is - we have to take each day as it comes.

"He is on beta interferon injections three times a week and he is on steroids.

"It is just a case of time will tell. The specialist did say he has time on his side and if they get him started on the treatment then hopefully they can try to keep the MS at bay."

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