Better futures for young lives with epilepsy and associated conditions

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Andy and Tom's story

Tom was diagnosed at 13 months. He was given an EEG which didn’t show any epileptic activity.

Tom also had a lumber puncture and various blood tests. Following two days of tests in hospital there was still no diagnosis. It was only when he had another seizure on the hospital ward and a paediatric neurologist was there to observe it that a definite diagnosis was made.

Andy, Tom’s father remembers: “When Tom had his first seizure it was very scary, his skin turned blue, his whole body was rigid (later we realised this was a tonic seizure). Panicking and not knowing what to do, we rang for an ambulance. By the time it arrived his seizure had subsided.”

At the moment Tom’s condition is managed through medication and he also a VNS implant. This device is similar to a pacemaker and regulates the electrical activity in Tom’s brain so it can stop seizures altogether or reduce their impact.

Andy said: “Thankfully he’s had several seizure free months but you just don’t know if or when the seizures could start again. The reality is the condition is controlled and managed, it hasn’t gone away.”

“It’s taken a lot of hard work to get to this stage. There was a time when Tom was having 40 seizures a day and 20 seizures a day was not uncommon.”

Tom has had a variety of seizures. He can have tonic-clonic seizures, atonic seizures, clonic seizures and absence seizures. The atonic seizures are a particular worry because Tom can just drop to the floor dramatically. Injury was almost a daily occurrence at one point and so he often wears a special helmet to protect his head.

Tom attends a main stream infant school and this has had its ups and downs. Andy explains: “Initially the school seemed unprepared for a little boy like Tom, but over the last 2 years it has been able to deal with his epilepsy and special educational needs. Tom’s learning was suffering and he began to fall behind his class mates. Tom would struggle to concentrate in class and would often have a seizure and be taken out of class.”

He now has a specially trained teaching assistant who works with him on a one to one basis. She has helped tremendously with Tom’s schooling and is fully trained in what to do when he has a seizure, she has also been trained in how to use his VNS device. Tom’s learning development over the last year has been excellent and he is progressing really well now.

Andy said: “Family life was a day to day struggle whilst he was very young. We were forever learning new things about epilepsy. Family trips and holidays were very difficult to plan, the routine of giving him his medicine (and him wanting to take it) was extremely difficult at times. There was very little “down time” or time to relax, nocturnal seizures were especially draining for both me and his mum. As a result we got even less sleep than your average parent of a toddler, this soon began to effect my relationship with his mum, which contributed to our split.”

“The medical support we have received for Tom on the whole has been excellent, from getting past the initial problems of being diagnosed to the operation to have his VNS implanted. The regular consultations and meeting with his epilepsy nurses have proved invaluable, and certainly helped my understanding of what epilepsy is and how to live with it.”

“As a result of my experiences of living with Tom’s epilepsy, I decided to set up a blog, ukepilepsy.com. There are also video blogs of myself and Tom discussing his epilepsy and treatments, my hope is that other parents will view the videos, so they can see firsthand how a 5 year old views his epilepsy.”

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Cyber EssentialsFundraising RegulatorYoung Epilepsy is the operating name of The National Centre for Young People with Epilepsy (NCYPE).
Registered Charity number 311877 (England and Wales)

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