Epilepsy impact on family members

[Jowatson11]

My eldest daughter has epilepsy and averaging one seizure a week at the moment, typically late afternoon/early evening.

Her sister is really struggling with anxiety about when the next seizure might occur, such that she is finding it hard to be in the same room, have a conversation or eat together. Any tips on how i can help her deal with this? Thanks

[Hidden]

Did your daughter get an MR scan? How old are your children?

[Jowatson11 in reply to Hidden]

Yes we’ve had all the investigations and eldest who’s 17 is adjusting her meds to try and control the seizures. My query is more about how to help her sister who is 16

[Hidden in reply to Jowatson11]

Her sister needs to be 100% in the picture. There are plenty of vids on youtube that you can sit and watch with her. It's important she learns what to do as opposed to being told how to react.

[wxy123]

Vibrant's reply is so good. Another possible help is to find other families dealing with epilepsy, perhaps through a local support group, and hopefully with others in the same age group.

[Jowatson11]

Thanks both of you

[EpilepsyAction1 Partner Epilepsy Action]

Hi Jowatson11

It can be a difficult and a frightening time for siblings. We do hear of siblings struggling.

Every child reacts differently when their brother or sister is diagnosed with epilepsy. Knowing what to do or say is a difficult situation to be in. So it may take a while for her to understand and feel comfortable around her sister.

I wonder if it would help to encourage her to talk to someone. This may be a family member, family friend or teacher. Ideally it should be someone who understands epilepsy or is willing to learn about the condition.

I don’t know how old your daughter is but here are some suggested webpages that may be of help

Children and young adults section of website -

My sister has epilepsy - epilepsy.org.uk/info/childr...

What to do when someone has a seizure epilepsy.org.uk/info/firstaid

Talk and support groups | Epilepsy Action epilepsy.org.uk/talk-and-su...

Although the following are aimed at young people with epilepsy, I wonder if they may still help your younger daughter.

The Epilepsy Space section of our website to help 16–25-year-olds manage their epilepsy. epilepsyspace.org.uk/

The Hub is a friendly space for children and young people who are undergoing diagnosis or living with epilepsy. hub.thechannel.org.uk/

Both your daughters could always talk to one of us, Advice and Information Officers, on the Epilepsy Helpline (freephone) 0808 800 5050. Callers to the Helpline will receive a friendly welcome and can discuss any concerns confidentially. Our helpline is open Monday to Thursday 8.30am until 5.00pm, Friday 8.30am until 4.30pm and Saturday 10.00am until 4.00pm.

Finally, you may wish to try our other services.

facebook.com/epilepsyaction

twitter.com/epilepsyaction

epilepsy.org.uk/info/suppor...

Regards

Diane

Helpline Team