Marion’s daughter Marsaili was diagnosed with epilepsy when she was 10 years old.

She shares the challenges she has faced as a parent of a child with epilepsy and the impact her daughter’s diagnosis has had on her mental health.

Can you tell us a bit of background on how your daughter was diagnosed with epilepsy?

My daughter was 10 when she was first diagnosed with epilepsy. She started to present with tonic-clonic seizures which came on quite suddenly and as I had not seen anyone having seizures previously, I totally freaked out.

She was not admitted on that occasion as she had recovered by the time the ambulance arrived, but she continued to have regular seizures after which led onto tests being done affirming that it was indeed epilepsy.

How did you feel when your daughter was diagnosed with epilepsy?

My husband and I were shocked. We had only been given a diagnosis of her having autism at the age of nine as she had presented with learning difficulties from pre-school years. She also has the diagnosis of learning disability.

We have been told that her epilepsy has been caused by a genetic mutation unique to her as the rest of the family were tested, which has contributed to her epilepsy, which is refractory.

What challenges have you faced as a parent of a child who is living with epilepsy?

The main challenge is the unpredictability of seizing which can lead to anxiety and stress levels running high. I sleep in the same room as her and find myself half sleeping as I await any signs of seizing.

Some are so subtle only I could tell that they were happening. Things like a change in her breathing, clicking sounds in the back of the throat and sitting up wanting to go to the toilet.

Due to her seizing making her want to go to the toilet so often, we have had to resort to her having pull ups on every day in case of an accident.

I have also found it quite stressful dealing with recruiting for carers which is particularly difficult in Skye and having to act as an employer which was not something I was anticipating.

Nor was I anticipating constantly organising activities that my daughter could be involved in and which the carers could take her to which, again has proved challenging.

She didn’t always enjoy the classes/activities or the carer taking her there and so that could be challenging.

What impact has your daughter’s epilepsy diagnosis had on your family?

It has been quite a strain on all of us. I have needed my children at various times to help me with looking after her particularly in the couple of years after her father died as the seizures were persistent.

The other four children have had to take on the responsibilities of how to administer her medicines and what the protocols are.

There is always a risk assessment to be made going anywhere and because she is bigger than myself physically, it can be very daunting going anywhere with her should she have an onset.

I only have one son who lives near me now and he helps when he can by taking her to his home for the day or being my emergency contact if things go wrong. My daughter adores her siblings.

Has your daughter’s diagnosis of epilepsy had an impact on your mental health? If so, in what way?

My daughter’s diagnosis has left me extremely tired at times, feeling isolated even though I have a good carer and a few friends that call in as well as family members phoning or occasionally, visiting.

But ultimately the main responsibility of keeping my daughter alive, healthy and out of hospital is down to me, which can be overwhelming.

I particularly miss having my husband to share the burden but also the joy with. I am so fortunate that my daughter is so unaware of her disability, and she has a great sense of humour and loves her music as with all our family.

There is nothing better for lifting my spirits than my daughter having a boogie round the kitchen table with me!

What would you say to a parent who has a child recently diagnosed with epilepsy?

Do not be afraid to questions and make sure your voice is being heard. You know your child best.

Keep a diary of seizing and medication which will enable you to see if there are any patterns, triggers.

You will become the best doctor for your child as most people, with their own differing diseases are.

Epilepsy is so difficult to treat as there are so many variations of presentation and whatever medication helps one will not automatically help another as we are all unique.

Try and get a good support network round you as you may have a few rocky years where particularly with a growing teenager with fluctuating hormones will come into play and cause things to be undone but hopefully that should plateau.

Your child may become more reclusive, insecure, anxious especially if they are having falls.

Medication will also leave them tired, and this can lead them to not being able to engage or focus as well on tasks.

Try and enjoy the little things in each day that can bring joy to both your child and you and if they can only achieve couple of things a day then so be it.

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