"Young Epilepsy's helpline was our lifeline." Lisa explains how our national helpline has supported her from the point of her son's diagnosis through to his transitioning to university.
Lisa shares her family's story
I first contacted the Young Epilepsy helpline after my son, Owen, had a massive seizure culminating in a night in intensive care, followed by a week in St George’s paediatric neurological ward. My husband and I arrived home with our 11 year old son now on daily medication. We had been given CPR training, a bottle of emergency rescue medication and some printouts from Google that the ward nurse gave us.
We were frightened and felt pretty helpless. Young Epilepsy’s helpline was our lifeline. Whilst medical professionals dealt with the medication and stabilised the seizures, the helpline was able to ease our anxieties. We could ask questions anonymously, over the phone, without having to worry about how silly they sounded.
The helpline staff sent us Young Epilepsy publications and guides for us as well as for Owen. These quickly became our bibles. We were able to share this information with Owen’s school, friends and family which helped our personal support network too.
Sometimes, when you’re frightened, all you need is a listening ear and a calming voice. In the course of a conversation, we found we had answered our own questions. We needed that person on the other end of the phone to listen, calm our anxieties to help us get a rational and perspective view. They have been there for us through the rollercoaster of the last seven years, changes in seizures, new diagnoses and changes of meds.
The helpline would always welcome a positive call and share in our celebrations too. Recently they’ve been a massive support for us as we overcome exam stress, extreme behaviour, medication side effects and the prospect of Owen moving out and going to university.
We acknowledged early on that there is little offered to parents and families on how to cope. The impact epilepsy has on the whole family’s mental health is huge. The helpline has filled that gap for us.