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Let's Talk Epilepsy with Sarah Bradley
Our story
Diagnosis
As well as being the SEND Local Offer Advisor at Trafford Council, many of you will also know that I am mum to a very special young lady called Daisy-Mae who was born with severe learning disabilities, ASC and idiopathic scoliosis.
Daisy is nearly 13 and last year, very unexpectedly, she starting having seizures and was diagnosed with epilepsy. It was a big shock for us, and I want to talk about our experiences in case it helps other families to come to terms with epilepsy as it is a lot more common among children with SEND than I had previously believed.
In August last year – while on a camping trip, in the middle of nowhere! – I thought Daisy was choking on her breakfast. It turned out to be a massive seizure and I didn’t know what to do or how to help her. I wish I’d known what to do when someone is having a seizure – everyone should learn what to do!
Luckily, camping opposite us were two off-duty police officers and their wives, who were nurses – they helped put Daisy in the recovery position, called an ambulance and we went to a local hospital. Daisy was discharged the same afternoon but that night, at home, she started to fit again and we ended up in a local hospital.
She went on to have over thirty tonic-clonic seizures in a row and needed very strong medication to stop the cycle. This lead to her being admitted to the High Dependency Unit and spent a total of seven days in hospital while the medical staff brought the seizures under control.
Feeling scared and alone
I felt more isolated and frightened when the doctor told me Daisy has epilepsy than I ever did when she was diagnosed with autism or her learning disability.
I couldn’t sleep, I didn’t want to let Daisy out of my sight, I gave her soft foods, watched her like a hawk when eating, I put a bed alarm in her room and a baby monitor and bought her an anti-suffocation pillow.
I thought I will never be able to leave Daisy’s side ever again!
I’ll have to give up work, I’ll never go on a night out again, I’ll never trust anyone else to look after her…
It's more common than you think
It has been a massive shock – I hadn’t ever expected her to have a seizure. But speaking to the doctor and epilepsy nurse at the hospital, they made me aware that children with autism or a learning disability are actually more likely to develop epilepsy than other children.
And when we came home from hospital and I spoke to friends and family about what had happened to Daisy, I was surprised to learn that several of Daisy’s classmates and lifelong friends, or children I have worked with, are also living with epilepsy – it just wasn’t something that we had ever talked about!
Yet here are other families coping, living their lives to the full, going on holiday, even leaving their children with grandparents – so that was very reassuring to learn.
Support and advice we received
We have had great support from the epilepsy nurse, I can talk to her whenever I need to and she gave me lots of information leaflets to read. I couldn’t pick them up for a while – I had to process the trauma of Daisy’s initial illness in my own way.
Reading up on epilepsy can also be quite scary. It’s important to know about Sudden Unexplained Death in Epilepsy (SUDEP), for example, so that you can take practical steps against it. But when you take a deeper look into statistics on SUDEP, it’s not as common as you might fear at first so arming yourself with information can help keep things in proportion.
The best piece of advice the nurse has given me is to have a really low threshold for calling 999 – don’t leave it to long to call if you’re worried. The ambulance service are trained and experienced, and will make the right call for your situation.
For example, when I dialled 999 about Daisy I was phoned back by a head paramedic who asked for more information about Daisy’s condition and arranged an ambulance for us straight away after initially being told we’d have to wait 4 hours.
Living with Epilepsy
You’re told, “try not to let epilepsy affect your day-to-day life” but that’s harder than it sounds!
What I struggle with most is epilepsy’s unpredictability. Daisy has no identifiable triggers, her seizures just happen and when her medication changes is response we don’t know how long it will be effective for.
But as time passed from that initial cluster of seizures, I found myself letting go a bit more, relaxing a bit more and allowing her to do more without me.
The next two clusters of seizures in winter happened close together which really upset me and affected what I would let her do and who I would let her be with.
That wasn’t good for either of us so I spoke to our school nurses – they have been caring for children with epilepsy for a very long time and they know when it’s safe to let a child carry on with things or when it’s safer to be cautious. Putting my faith in school and the teachers has helped us to get back to normal life as much as we can.
One fellow parent carer told me, “the more the seizures happen, the more used to it you get.”
Which is true. As time has gone on, I have felt more confident and better equipped to see the signs building up and deal with a seizure when it comes.
Daisy’s last seizures were a couple of weeks ago and we were able to manage them at home without needing to go into hospital – and that feels like progress. I know many of you will know what I mean.
Let's talk about it!
This is more common than I ever realised, and now I want to help other families who may find themselves in the same position as we did.
It is so important that we talk about medical conditions which affect children – whether they have SEND or not – so that when it happens for the first time parents don’t have to feel so overwhelmed and so alone.
Life can, and does, go on with epilepsy.
I’ve found Facebook groups and the charities Epilepsy Sucks UK and Epilepsy Action a great help.
- ESUK | Facebook (Epilepsy Sucks UK Facebook Group)
Again, at first I found it overwhelming and upsetting and couldn’t read many of the posts, but as epilepsy become more normal to us the peer support has been invaluable.
If you want to connect with other parent carers – whether your child has epilepsy, or any other disability, additional need or health condition – come along to our Chatty Café on the first or third Thursday of every month where you’ll get a warm welcome and advice, information and support.