Paige had her first seizure at nine months old. It lasted for 4 and a half hours. Mum, Gemma and Dad, Martin share their story.
Paige had her first seizure at nine months old. It was absolutely horrendous, it lasted four and a half hours. At the time, it was put down to her having a temperature and being poorly. But she had more seizures after that, each lasting a very long time.
In the early days we were at the hospital very frequently. The staff there would say ‘hello, it’s you again’.
Gaining a diagnosis
When we were first told it might be Dravet Syndrome, it was hard to accept. You can’t help but look it up on Google to try and see how things might be for your child. It’s not easy as you don’t know what the future holds and every case of Dravet Syndrome is different.
Paige was diagnosed with Dravet Syndrome just before her first birthday. Luckily, her consultant at the Royal Alexandra Children’s Hospital in Brighton had recognized that it could be Dravet Syndrome straight away and had offered to get her tested. Having an early diagnosis meant that Paige could be put on the right medication and we were able to get support in place from the beginning.
Day to day, our lives changed completely when Paige was diagnosed. She has to have 24/7 care and we’ve had to become experts really; we’ve had to keep up our knowledge as the type of seizures Paige experiences have really changed over time.
We’ve learned to read the signs when Paige is going to have a seizure and we also have to pass on that knowledge to our families, who are very supportive.
Taking it day by day
Paige is doing really well at the moment and her medication manages her seizures pretty well. We know that she is less affected than many other children we know of with the condition.
Apart from the seizures, one of the main things that is affected for Paige is speech and language, but recently that’s been coming along well. On Gemma’s birthday this year, Paige spoke the words “Happy Birthday to you,” and it was such an amazing thing because before that she hadn’t said two or three words together. It was so emotional. It might not sound like a big deal, but for us it was just huge!
Paige goes to a mainstream school locally and her school has been amazing - she’s coming along so well there. She loves her pets and has a dog and a rabbit. She also loves swimming, play doh and painting.
Support from DSUK
Paige’s consultant, Dr Sudarsan, pointed us in the direction of Dravet Syndrome UK for support and information from the outset. Along with support from Dr Hughes at the Evelina Hospital in London, we’ve had a brilliant team around us.
The online private forum for Dravet Syndrome UK parents and carers is brilliant for information and learning from other families.
Over the years, we’ve wanted to give back and support the work of DSUK. Martin has fundraised over £10K for the charity over the years, including walking five marathons in five days to raise funds during lockdown. We do all we can to support their work.
Advice to other families living with Dravet Syndrome
Our advice to parents of newly diagnosed children would be to connect with others, never give up, don’t let it stop you doing what you want to do in life.
For example, we loved travelling abroad before we had Paige and we now love travelling with her. It’s not easy, but it’s all in the planning. We check before we go that there is a hospital within reach of where we’re going. We especially love going to Turkey. She has had seizures when we’re there and the hospital has been brilliant. A good travel tip is to find out if the airport has a sensory room as we’ve found that really helps.
We’d encourage other parents/carers to keep a seizure diary to keep a record of how long the seizure lasted and what type it was, so you can see if there’s a pattern. It’s also a good idea to record it if you can, though of course that’s not easy if only one of you is there at the time.