Ashley

Parent’s Mental Health Day: Ashley’s story

Ashley’s daughter Emma was recently diagnosed with epilepsy. She shares her story and how Emma’s diagnosis has impacted her family.

Emma was diagnosed in September 2022 after her second tonic-clonic seizure. Her first seizure happened out of the blue in January 2022 when she was just over one and half years old.

After initially speaking with the neurologist, it was a very much ‘wait and see’ if it happens again and if it did then further testing would be done. After the second seizure in September, Emma had an EEG and a few other tests done and it was confirmed epilepsy.

It was a huge shock to all of us as a family. With no history of epilepsy in our family, we were faced with a lot of unknowns. She was still so young, and we worried a lot on how this would impact her life.

Emma has tonic-clonic seizures which thankfully are very infrequent (only a few a year) but are very prolonged and mostly always require hospitalisation to stop them.

After a seizure, she will sleep for hours and wake up feeling very groggy and achy.

After the first few seizures, she spent a few nights in hospital as she lost the power in one side of her body and was unable to walk or gain her balance for a while. Thankfully, this did come back with no lasting effects.

 

Worry every day

We worry about Emma every day. If we go on days out, remembering to pack her rescue medication just in case.

We were always reluctant to take Emma on holiday in case she had a seizure in another country.

We did however manage a family holiday in March 2023 and in true Emma style, she was great all holiday but had a seizure on the plane home!

Thankfully, a few doctors on board stepped forward to offer assistance and we were able to stop it with her rescue meds and make it back to Glasgow were paramedics met us on the ground.

It was an awful experience and one we are not in a hurry to repeat.

Our families have been great in helping and supporting us with Emma’s epilepsy. They know what to do in an emergency and that gives us reassurance if either one of us isn’t with her.

We know Emma’s triggers and try to keep her routine as much as possible.

Joining many Facebook groups at the start was a great support. Hearing of other parents who were going through the same was comforting and reading stories from people themselves who have epilepsy to know how they were feeling and the impact it has.

Emma is only four so can’t really understand what’s going on but getting a better understanding of what she feels like before and after a seizure helps us to support Emma.

The nurse specialists at the hospital are always available to answer any questions too which is helpful.

Reach out to others and ask as many questions as you can. Know you are not alone.

If you are a parent of a child living with epilepsy and need some support, please call our freephone Helpline on 0808 800 2200 or email contact@epilepsyscotland.org.uk