Although thought to be relatively uncommon, it is fast becoming clear that there is a gathering number of children and teenagers being diagnosed with Multiple Sclerosis around the world.

Below you will read stories of children up to 12 who have been diagnosed with MS.

Paediatric MS Information

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 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."

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.

"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."

Commenting on Sam's story, Helen Yates, Multiple Sclerosis Resource Centre Chief Executive said, "Whilst we are always saddened to hear of someone so young as Sam receiving an MS diagnosis, we are pleased to be able to offer support to Sam's family. We have been able to put the family in touch with other parents of young people with MS which has helped"

Source: BBC News © British Broadcasting Corporation 2009 and MSRC (13/12/09)

Tuesday 3rd of March 2009 is a date that sends shivers down my spine for it is the day we were told our darling gorgeous little boy Sam had a brain tumour.

It all started in January this year. Sam had a cold just the normal runny nose  and coughing after a week or so it had gone, but then Sam started complaining of headaches. Now think what you like but I had a horrible feeling straight away that this was going be the start of something serious. After 3 or 4 days the headaches were coming more often and now he was being sick with them.

I took Sam to our then G.P. who I must add we are no longer with, anyway I was told it was just another cold and sent on our way. I wasn't happy, something was wrong. The headaches began to wake Sam up 2 or 3 times during the night and also he was starting to complain of a sore neck and sore eyes. I went back to my G.P who told me to stop chocolate for 10 days and get Sam's eyes tested. I was worried sick, I wanted Sam to see a paediatrician, I wanted a CT scan.

Later on that same day Sam started screaming that he couldn't see. We took him straight up to our A & E Department where we saw a doctor. I told him everything, he checked Sam over and said he was fine. I burst into tears,  I said I wasn't leaving until we saw a paediatrician, I told him I thought it was a tumour and I wanted a CT scan done. He laughed and said no way was it a tumour but he'd see if there was a paediatrician free to see Sam, thank God there was! We went up to Ward 15 at Dumfries and Galloway Infirmary where Sam was seen by an army full of doctors. They took blood and said we weren't going home that night and he was going for a CT scan asap. I was terrified that they didn't like the fact that Sam's vision had gone earlier that day and they wanted to check what was going on inside his head. I knew exactly what they were checking for, a brain tumour, but they didn't say it.

Sam had his scan and a while after it a nurse and 2 doctors came for me and Ian(Sam's Dad). We were told Sam had a serious problem and we'd be transferred to Edinburgh's Hospital For Sick Children. I asked if it was a brain tumour, the doctor said that they thought so, I asked if Sam was going to die, he said he didn't know. We were in shock, there was no way I was going to live without Sam, we have Lucy our little girl who is 7, how could we tell her Sam was going to die?

How we got through that night I shall never know. Anyway the next morning we were taken to Edinburgh, we were taken to Ward 7 and met by the most amazing doctors and nurses. We were told  that Sam had to have  an MRI but their MRI was broken! So Sam would have to go to the Western Hospital the following day to have it done. Goodness sake, another 24 hours to wait! We were in a complete mess, I was crying all time and Ian was in denial, he kept saying it can't be a tumour it just can't.

At about 5pm that night Sam, Ian and me were in the ward playroom when 3 consultants came in to see Sam. Sorry but 2 of these men's names I cannot remember,  but one will be in my heart forever, the wonderful Dr Kamath Tallur. After checking Sam over he told us not to worry and he would see us after the MRI. I thought, what the hell does he mean not to worry.

Next day Sam had his MRI, a lumbar puncture and bloods done.

When we got back to the Sick Children's Hospital Sam's consultant, Dr Tallur, told us the news that it was not a tumour but a condition called ADEM. He explained that it was an autoimmune condition and that Sam would be given 5 days of high doses of steroids and that he would recover well and that ADEM only happens once, so he won't get it again. We were jumping for joy, it was a miracle, our darling boy was going to be ok and he'd be with us forever.

For a few months Sam did well, back to school and just being a normal 5 year old. Life was just amazing, we knew how lucky we were. However,  in July Sam was walking funny, he'd fall, trip and I noticed his hands would shake. I phoned his consultant Dr Eccleston, here in Dumfries, who checked Sam over and said he was happy with him and for me to relax and stop worrying. The next morning Sam's face was twitching, my heart sank, I felt sick. Sam's face twitched back in February when all this started. I covered Sam's left eye up and asked what he could see, he said "black". Oh my God, it was ADEM again, it was the same as what happened in February,  he couldn't see!

We went back to the Children's Hospital where Sam had another MRI,  bloods and 2nd lumbar puncture. Dr Tullar then told us that he was sorry there was new lesions and this time his spinal fluid had oligoclonal bands, which was not the case in March. We'd done our homework so we knew what this meant, our little Sammy boy had MS, but how? He was just 5 years old, no one in our family close or distant has it, it just doesn't make sense.

Sam was diagnosed with MS in August this year by Dr Belinda Wellar at the Western General, Edinburgh. Ian cried, I was scared, I still am, scared of the future. Sam is now 6, he's on 3 x week Rebif, which I do at home. He is also on a high dose of oral steroids.

I hope and pray for a cure every day.

If anyone wants to contact me please do at sandrablythe@msn.com

Commenting on Sam's story, Helen Yates, Multiple Sclerosis Resource Centre Chief Executive said, "Whilst we are always saddened to hear of someone so young as Sam receiving an MS diagnosis, we are pleased to be able to offer support to Sam's family. We have been able to put the family in touch with other parents of young people with MS which has helped and now we hear there might be some treats in store for young Sam!"

© Multiple Sclerosis Resource Centre 2009

Danny and Laura Thompson (back, from left) with their 12-year-old twins (front, from left) Caleb and Zach Ellis. Zach was diagnosed with Multiple Sclerosis when he was 8.

Twelve-year-old Zach Ellis has many hobbies.

He likes to ride his bike, draw, play football with his twin brother Caleb and play video games, his favorite game being "Resident Evil."

He likes to listen to Michael Jackson. He enjoys history and science and loves to talk about UFO's and Area 51.

He also enjoys discussing World War II since his great-grandfather served in the war.

By all accounts, Zach is a regular, everyday, average, ordinary 12-year-old.

Living with Multiple Sclerosis.

Multiple Sclerosis (MS) is an autoimmune disease where the body's immune response attacks a person's central nervous system.

Zach has had a rough go since he was born.

When he was 3, he had meningitis.

"Meningitis can cause MS to surface," Zach's mother, Laura Thompson, said. "From ages 3-8, he spent a lot time in the hospital. (Doctors) thought he had a rare form of meningitis."

Laura said the family went to a clinic in Minnesota and more doctors said they were not sure what was wrong with Zach.

But a neurologist at Riley Children's Hospital mentioned MS when Zach was 7, and his mother feared the worst.

"When he mentioned it to us, I thought we were going to be devastated," she said. "But it was the exact opposite."

Zach was officially diagnosed with MS when he was 8. But the Jackson Township Elementary School fifth-grader said it's just something he has to deal with.

"When I hurt, I can't stand the pain," he said. "I think about it, but it has to be done."

To help alleviate the pain, Zach takes two injections per week of medication in addition to various other medications. As well, he also has chronic lung disease and has to have breathing treatments twice a day.

He has been on medication since 2005.

"We call him our little old man," Laura said.

But the years before the diagnosis were rough.

"You just don't think of children showing up with this," Laura said. "We kind of went through hell those few years."

She said Zach has had to re-learn how to walk two different times and has had eight spinal taps. She added he still gets terrible burning sensations in his legs from time to time.

"We have to do stretches because his legs tighten up," she said. "He does everything the other kids do. But the heat really gets to him."

To the best of her knowledge, Laura said Zach is the youngest person in the Wabash Valley with MS. She said her research showed it's rare in young adults.

"It is hard to diagnose," she said. "But this family has lived with it. Once you have the knowledge to deal with it, it's easier to fight.

"If you sit down and give in, you're going to lose. But if you keep moving, you'll be able to keep moving."

Zach said for the most part, he doesn't think about his affliction. But sometimes, he can't help it.

"It's hard to get out of bed," he said as his mother added he sometimes has trouble sleeping. "But it's not that bad."

"He's a really tough kid," Zach's stepfather Danny Thompson said. "He doesn't dwell on it. We let him go at his own pace."

Zach has plenty of people surrounding him to talk about MS. In fact, his cousin also suffers from MS and Laura said they talk frequently.

She added Zach takes a lot of inspiration from his twin brother Caleb.

"He gets strength from his brother," she said. "In some ways, I think it's been harder on Caleb. He's had to be the one to watch it all."

After the initial diagnosis, Laura said the family spent many nights at Riley.

"It was our second home for a period of years," she said.

However, since Zach has been taking the medication, Danny said the family is at the hospital maybe three-four times per year.

On Sept. 12, the family will take part in Walk For MS at Saint Mary-of-the-Woods College. It will be the fourth time the family has walked in the event, which is sponsored by the Indiana Chapter of the National MS Society.

"It's mostly people who have it and their families," Laura said. "But it's getting a little bigger each year. We've met a lot of positive people because of it."

Laura said those participating may either take part in a one-mile or three-mile walk and because of summer's sweltering heat, she said the event is typically in September in the morning when it's cooler.

"That's kind of nice," she said. "They can walk at their own pace."

Source: The Brazil Times © 2009 Brazil Times (21/08/09)

Brave Lucy Wood’s smiles hide a secret sorrow . . . that she’s one of the world’s youngest children to fight multiple sclerosis.

The happy five-year-old should be concentrating on dressing her dolls and giggling at her Disney film favourites.

Instead, last summer her family’s world was shattered when doctors in Newcastle gave them the shock diagnosis they may never recover from.

It is a tragic twist for the Wood clan, from Peterlee, County Durham.

For Lucy’s dad Stuart was told by doctors at the age of 27 that he would have to fight MS.

And after Lucy began suffering terrifying bouts of blindness, vomiting and walking difficulties, Stuart and Lucy’s mum, Sharon, feared the worst.

Sharon took Lucy to an optician who explained there was pressure building at the back of her left eye and referred them to Sunderland Royal Hospital.

She was switched to Newcastle General Infirmary, the children’s specialist centre for the North East, where she was put under a general anaesthetic while doctors carried out a lumbar puncture, blood tests and a brain scan.

That was last summer and a time the family will never forget.

For their “beautiful little girl” was told she had the incurable condition of the central nervous system.

“Hearing the diagnosis was like being in a car accident,” said Sharon, 39.

“We already had a good idea of what was wrong with Lucy, but having it confirmed was horrific.

“It was her birthday party and Lucy lay down on the kitchen floor exhausted, but then couldn’t get up.

“When she began vomiting, I put her to bed hoping it was a tummy bug. But two days later, Lucy started dragging her left leg, just as her father had done before he was diagnosed.

“I felt sick. This time her neurologist confirmed MS. We were inconsolable. It just seemed so cruel.

“She is such a brave girl, she never complains.”

When the diagnosis was confirmed, Stuart was distraught and blamed himself.

During her bad days, Lucy suffers from slurred speech and blurred sight, and has to use a buggy when she goes on trips out.

In between she is like any normal child, apart from tiring easily and occasionally dragging her left leg.

There is little research into children’s MS, and no way of knowing what the future holds for Lucy.

However, experts believe she will experience significant neurological deterioration before her 21st birthday.

Stuart, 40, said: “I know it isn’t my fault. But that hasn’t stopped the guilt. I am the one who has passed this disease on to our beautiful little girl.”

Sharon is trying to stay positive and has given permission for Lucy to star in a national advertising campaign for the MS Society aimed at raising awareness of the condition in children.

“Who knows what the future may hold,” said housewife Sharon.

“There could easily be a new drug or even a cure for MS.

“We have been unlucky. But we are a strong and loving family. We have a lot to be thankful for.”

The North East has already had its share of heartbreaking stories on childhood MS.

In 2007, Gateshead teenager Patsy Peebles was told she had the condition at the age of 14.

She has gone on to be an award-winning campaigner in raising the profile of teenagers battling with the disease.

Source: Sunday Sun © 2009 owned by or licensed to ncjMedia Limited. (03/06/09)

© Multiple Sclerosis Resource Centre (MSRC)