Greg

Greg is an energetic and bright 11 year-old with a wonderful sense of humour. To see him now you wouldn’t think that there was a time when his epilepsy led him to behave like a Tasmanian devil, as his parents recall, and his seizure activity meant that he had to miss much of his education in a mainstream school.

Being here [at The National Centre for Young People with Epilepsy (NCYPE)] Greg’s really part of something – he loves it and it’s somewhere where he really feels he belongs, his Mum Val proudly asserts.

When Greg was four and a half he started to have what his Mum Val and Dad Richard refer to as sicky bouts which was initially thought to be a virus. Val explains: When Greg started to have blank spells before heaving, as if he was going to be sick, we realised that it was something else. His behaviour always seemed to be worse before a sicky bout which wasn’t Greg – he’s a gentle and quiet boy.

Greg was diagnosed with epilepsy just after his fifth birthday. He has complex partial seizures in clusters which alter a person’s consciousness and means they won’t remember the seizure or will have a distorted memory of it. This form of seizure can also take the form of 'automatisms’ and repeated activities such as chewing or looking for something.

Remembers Val: It was horrible to see Greg’s seizures. The anxiety at home after Greg was diagnosed with epilepsy also caused him to have more seizures. His behaviour was difficult but could he help it? Nobody tells you what to do and he was still our little boy.

I remember our daughter looking at some old photos of Greg one day and saying she wanted the old Greg back then burst into tears, Val emotionally says.

Greg attended a mainstream school until he was seven but, as Val recalls: The primary school tried in every way to accommodate Greg’s needs but as time went on things became impossible. Greg would say I don’t want to be like this” and because he struggled to do the same work as his classmates he would be seated on his own to do puzzles.

In year two Greg’s school could only take him for afternoons and on a one-to-one basis. He’d be separate and not part of the class. Greg couldn’t cope and the school couldn’t cope that way. At first we were told that he didn’t need a statement, then Greg was offered one-to-one help which he already had. The school helped as much as they could.

Then we began a long and ugly battle to get Greg statemented, continues Val. A statement of special educational needs is given by the child’s local education authority (LEA) which takes advice from professionals working with the child. It describes all of the child’s needs and the specialist help or provision they will need.

Greg’s school suggested his family look at The National Centre for Young People with Epilepsy (NCYPE) and Val accompanied by Greg’s teacher came for an initial tour. Greg started at The NCYPE’s St Piers School as a day student in 2003 and immediately loved it.

But Greg’s epilepsy was still difficult for him and his family to cope with. Says Val: Sometimes when Greg’s seizures became more generalised and difficult to stop we’d end up going to hospital. Greg has tried most of the anti-epileptic medications – some seemed to work initially but the effect unfortunately didn’t last. The side effects as doses increased seemed to usually include aggression and in addition, after a few months on steroids, Greg was transformed into a telly tubby with an obsessive fear of germs.

Greg was investigated for possible epilepsy surgery but as his seizures affected both of his temporal lobes this wasn’t an option. Through Professor Helen Cross, a consultant The NCYPE shares with Great Ormond Street Hospital for Children NHS Trust, Greg was included in a trial she was running on the ketogenic diet, which combines high fat with low carbohydrates and every meal is served with coconut oil to increase the fat content.

According to Professor Helen Cross: Our recent randomised controlled trial has suggested about 45 percent of children become more than 50 percent improved by being on the ketogenic diet. Certainly if a benefit is seen then medication can be weaned, and some children do become seizure free.

Every ingredient has to be weighed and in proportion, says Val. I had to experiment with ingredients because I’m not a cook – my first cakes looked like Yorkshire puddings! she laughs. It must have medical back-up though, Val helpfully reminds. Greg’s now had two medications completely removed and is currently reducing the third.

Greg’s epilepsy has become an important part of his family’s life. I’m studying an epilepsy course at Leeds University to help Greg, Val proudly says. Val also helps to run Matthews Friends, a charity supporting parents and professionals implementing the ketogenic diet.

The improvements in Greg since he’s attended St Piers School are amazing. Greg goes to Scouts with a helper and meets some of the children that he went to his mainstream school with, she smiles. It’s his favourite thing. He’s also got increased self esteem and confidence.

Greg was also diagnosed with autism just over a year ago. Greg’s rather obsessive, explains Val, but that helps him to stick to the diet. He now goes out and plays with his sister and our neighbour’s children at the front of our house – I can’t believe he’s out there.

So what’s special about The NCYPE? It’s the holistic approach – with so many disciplines involved in caring for our children there is such scope for using experts from every field to advise – it’s something that parents can be a part of too, says Val. Also his sister likes the fact he gets homework to do now as well.