Jan’s son Peter has been living with epilepsy since he was a young child.
Here Jan explains how she felt when he was diagnosed and how Epilepsy Scotland’s Helpline has supported her.
How did you feel when your son was diagnosed with epilepsy?
I was actually quite upset because at that time he was non-verbal and it was epilepsy that was stopping him from talking.
When they told me, he had a rare condition called Landau Kleffner syndrome that is when I was devastated by it.
But the medication that they gave him helped and he started talking when he was about five or six years old and now, he is non-stop talking.
I am now alright with it because way back at the start I was totally devastated. You learn to live with it.
What type of seizures does he have and how does it affect him?
It is mainly at night time he has seizures. It is tonic-clonic seizures that he has.
There are mostly absence seizures that he will have during the day and I just count seconds just to see if he actually comes out of them or if he is going to have a full-blown seizure.
But thankfully it lasts seconds at most and then that is him back. I just say to him that are you back with me now Peter and he will just look at me sometimes he will just laugh or say yes.
How has Epilepsy Scotland’s Helpline helped you?
The support has been absolutely amazing. It was the actual practice nurse who phoned me and gave me the number.
I gave the number a call and explained to the Helpline team that my son’s got epilepsy, and he doesn’t like speaking on the phone.
So, from then on that’s when the support really started. It has actually kept me quite sane.
It also gave me someone to talk to, especially during the COVID lockdown.
What differences have you noticed since using the Helpline?
The support has been really good and when I say things to Peter, for example, having your face in games, as he likes to play the Playstation and I say that Epilepsy Scotland says that is not very good for you.
I say come on you come off that and using Epilepsy Scotland is quite good because then he will listen to me saying that because I can say Epilepsy Scotland said this and that, as he won’t listen to me saying it.
It has also helped me to keep calm and not get stressed and uptight whilst looking after Peter.
What advice would you give to people thinking about using the helpline?
I would say go ahead and phone them. It has really helped lift my spirits and has most definitely changed my life in a positive way.
It has been great for Peter’s mental health, even though I am talking to the Helpline because I am taking back the information that I am getting from them and I am saying to Peter that Epilepsy Scotland said doing this is better for you.
Also, helps my mental health as well.
Our Helpline is open to anyone who has questions about epilepsy or needs guidance to find the right support for them.
Call us on 0808 800 2200 or email firstname.lastname@example.org