Nightmarish seizures affect six years old boy's life

SIX year-old Ben Holmes doesn't like bedtime. But unlike other kids who just want to stay up to watch telly, Ben has good reason to fret - he knows that going to bed often means he'll suffer life-threatening fits.

Because of a severe form of epilepsy, rarely a day goes by when he doesn't suffer a seizure.
Sometimes he can have as many as 150 a day, with the worst usually happening at night.
Mum Jane said: "Ben associates his bed with feeling rubbish, which means we can have a real hard time getting him to go to bed at night.

"There are nights when he won't go to bed at all or when he does, he will not lie down because he knows something might happen.

"Thankfully though, when Ben does have a seizure he is unconscious throughout, he just knows he wakes up feeling terrible.

"Knowing that has kept me going because seeing your child having a seizure is devastating to watch. At least I know he is not in pain."

Ben, from Edinburgh, was just a week short of his third birthday when he suffered his first seizure.
After a normal pregnancy, he had seemed like a perfectly healthy boy.

Then Jane, 39, who has older sons Jack, 10, and eight-year-old Michael, began to worry he was slow to develop.

She said: "He slept a lot and he didn't crawl for quite a while. He was also 27 months before he walked.

"But my other two boys were not the speediest developers and, as my mum kept reminding me, it took me along time to walk, too.

"So I just thought I must have passed on my own late-developing gene.

"Ben had glue ear so I also thought that might be affecting his balance .

"But then he started doing odd things, such as holding my hand and banging his forehead off it.
"I started to worry and took him to aneurologist who said it was probably a behaviour mannerism because of his developmental delay.

"He was put on a waiting list for an MRI scan, but it was while waiting for the scan that he had his first fit."

It was the summer of 2004 and Jane and her solicitor husband Malcolm had taken Ben and his brothers to a cottage in the Highlands for a holiday.

Ben was sick on the first morning but Jane didn't think there was much to worry about because he was able to eat his breakfast afterwards. However, during his nap that morning he had his first seizure.

Jane said: "It couldn't have been much worse. The cottage was in quite a remote area about 50 minutes north of Inverness.

"He had been sick but, like children do, he bounced back, had breakfast and then went back to bed.

"I was on the phone to my sister when I heard a noise. I went into the room and Ben was having a seizure.

"He was jerking and blue. Never having seen anything like it before, I did the whole hysterical mother bit.

"It was petrifying - and I am not generally a hysterical person. The fact we were in the middle of nowhere didn't help.

"My sister, who is a doctor, told me to put the phone down and call an ambulance.

"We could hear the sirens coming for miles and in that situation it was the most comforting of sounds."

Doctors said it was probably just a convulsion and told the family to go back to the cottage and enjoy the rest of their holiday. But Jane's sister suggested that, with Ben's history of late development, they should take the seizure more seriously and return to Edinburgh.

AT home a few nights later, the tot had his second seizure. Jane, said:"We knew something was seriously wrong.

"We had him sleeping next to us in case it happened again and when it did we rushed him to hospital.

"But doctors said that as we had an appointment for the scan the following week, there was nothing to do but wait.

"We knew there was something going on in his brain, we even thought it could be a tumour."

Doctors diagnosed epilepsy and have spent the last three years trying to control Ben's seizures.
But as his type of epilepsy is always evolving, finding the right medication is difficult.

Already, seven different drugs have been tried without success.

And Ben's seizures seem to become worse with age.

Jane said: "Ben can now have as many as seven big Tonic-Clonic seizures a night, when he goes stiff, falls to the ground and jerks. During the day he has absences when he just zones out and can fall to the floor, knocking his head off the ground.

"He also suddenly loses the power of his neck, so his head falls forward and back up again.
"Doctors now think he may have Lennox Gaustaut Syndrome, a severe type of epilepsy which is difficult to control."

When he was first diagnosed with epilepsy Ben would often go for two weeks without any seizures.
Now he has at least one a day and has phases where they are so bad he needs hospitalised.
Jane said: "He is dreadful at the moment. It's such a shame. He loves company and wants to chat but all he can say is mama, dada and hi.

"He is such a remarkable child that despite having seven Tonic-Clonic seizures in a night, he can still get up and go to school. I don't know how he endures it, he is the most resilient little boy.

"He tries hard to enjoy life, he is amazing. We all feel humbled by him. He gets up, get on with it and tries to get as much out of life as he can."

Having a child with severe epilepsy also takes a huge toll on the family.

Parents have to deal with endless sleepless nights and siblings are also traumatised.

Jane said: "It has been difficult and, to be honest, we have been surrviving rather than living.

You try to do your best as you don't want your other kids to suffer.

We try hard to keep life normal for them but sometimes I wake up and think, 'I've never felt so tired'.
But somehow you always make It through - you just have to because there is no choice."

Jane will raise money for chilenwith epilepsy when she runs this summer's Edinburgh Marathon as part of the Muir Maxwell Trust team.

With her Gallery Girls pals, she will raise her entry mooney for the race holding a sale of kby local artists on June 6-8 Bonham Hotel, Ediinburgh.

TO learn about Muir Maxwell Trust, see www.muirmaxwelltrus.com To enter the marathon in their name, call Jo at Event Consultants Scotland on 0131 557 5756 or email Joanna@eventconsultants.com

'He is remarkable. After having seven fits in a night, he'll go to school'