Tom had his first seizure when he was five months old, it lasted 40 minutes and he was unconscious for nine hours after it. 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 hospitals and consultant soon after that. So when Tom was tested for Dravet syndrome 14 years later we didn’t think too much about it, it was just another test. When we got the result nearly a year later 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, Dravet UK, and suddenly Tom wasn’t a one off with ‘lousy epilepsy’ as his consultant put it, but there was a whole group of us and a Facebook page where we can stay in contact daily.
Tom is happy in himself and has a good quality of life
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.
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, he is 19 now 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 and 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. We are one of the parents of older children with Dravet syndrome now and 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 Dravet UK.