Tom had his first seizure when he was five months old, it lasted 40 minutes and he was unconscious for nine hours afterwards.
From that point on Tom had seizures every few weeks, and they all needed emergency medication to bring them to an end. We were told that he had epilepsy and he was put on medication to control it.
The first question that I asked the consultant that he saw at our local hospital was 'why?', he said that I would probably never get any answers and that we just had to accept it. We changed to a London hospital and consultants that understood the complexities of epilepsy soon after that.
Tom was tested for Dravet Syndrome 14 years later. We didn’t think too much about it, it was just another test. So when we got the result - nearly a year later - we were really surprised. I cried because after 15 years I had the answer to that original question of ‘why?'. It was genetic and was always going to happen, there was nothing that we could have done to prevent it.
Once we had the diagnosis, this opened up a whole new world to us - there was a support group, DSUK, and suddenly Tom wasn’t a one-off with ‘lousy epilepsy’ as his consultant put it, but a whole group of us and a Facebook page where we can stay in contact daily.
When Tom was approximately five and a half we went through a really bad patch for about eighteen months, medication stopped working and with each new medication that was tried it bought new problems with it, we were doing emergency dashes up to guys every few weeks and then having to stay there for weeks while they tried to stabilise Tom, It was a very lonely time, I stayed in hospital with Tom while my husband Adrian worked and then came to the hospital in the evenings.
The difference that support group would have made, being able to be in contact with other parents that really understand because they are either going through what you are going through themselves or have been there before.
We are one of the parents of older children with Dravet Syndrome and it’s really rewarding to feel that we might be able to help parents that are just starting off on the Dravet Road.
Tom is 26 now, and thriving.
At 15 he was accepted at Young Epilepsy (YE) as a residential student. As parents this was heartbreaking and wasn’t what we wanted for Tom, but as we were told that it was in Tom’s best interests by the educational psychologist, we felt that we had to explore the idea. Tom did well in the school at YE and with hindsight we felt that he probably should have gone there sooner. He stayed in school until he was 19.
However he hated college at YE, and we ended up withdrawing him after a 1 ½ years, his behaviour had deteriorated badly because he was unhappy. Unfortunately because he had been so unhappy it took approximately a year for his behaviour to settle down again at home and resulted in him being assessed as needing 2-1 care.
Tom is still living at home and although he still has 2-1 care between 9am and 5:30pm 5 days a week, and 1 carer at weekends, his behaviour is a lot more settled. I believe this is due to his good care package and carers who he classifies as friends but know exactly how to get the best out of him. Tom is happy and active at home. Although it is hard work and you have to accept carers being in your home daily, we wouldn’t have it any other way.
Once a year there is a Dravet weekend at Center Parcs. The first year we went was quite surreal - there were all these children behaving the same way as Tom, and they even seem to look similar. It was quite mind blowing and being able to talk face to face with parents who are all experiencing the same things, it has now become a yearly essential in our calendar.
I am hopeful that we have now gone through the worse with Tom, and his seizures seem to have settled into a pattern of between one to two a night with a couple of clear nights a week. Although he is still a high risk of SUDEP (sudden unexplained death in epilepsy), Tom is happy in himself and has a good quality of life.
Tom has been on the same 3 medications, Clobazam, Sodium Valporate and Topiramate, all the same dose as when he was approximately 8 years of age. When Tom was 25 we tried Epidiolex (cannabidiol) It didn’t work well for Tom, making him very aggressive and extremely tired. We hope that at some stage there will be a new medication which will make his seizure control better than it is. Apart from his epilepsy, Tom is healthy in himself and his heart is strong. He does have a mild scholiosis which is neuro-muscular, and is just starting on a new physio programme to help keep his back strong.
We now come under the category of being one of the parents of a young adult with Dravet Syndrome. It was very daunting going from childhood services into adult services, but its all do-able, it’s really rewarding to feel that we might be able to help parents that are just starting off on the Dravet Road, which we can do through the Dravet community supported by DSUK.