Glasgow mum's experience raising child with Dravet Syndrome

Glasgow Times

3 days ago

Glasgow mum Marie McLeish has a child with Dravet Syndrome - a rare and severe form of epilepsy.
Her daughter Amanda, 35, lives with the condition, which affects around one in 15,000 births and often causes seizures, intellectual disability, and serious mobility and behavioural challenges.
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Marie said: "When Amanda was 18 months old, she had 100 myoclonic seizures in one day while sat in her buggy.
"The buggy was the only safe place for her to be at that time because of the risk of her falling while having a seizure.
"We were literally sat watching her praying she would not go into a long seizure requiring emergency hospital admission.
"For the first five years, me and my husband took it in turns to watch her all night.
"It was terrifying."
Marie is sharing her experience of living with the condition as part of new research from the University of Glasgow into the psychological impact of Dravet Syndrome on families, published in the European Journal of Paediatric Neurology.
The study, conducted in partnership with Dravet Syndrome UK, found parents commonly experience symptoms of PTSD, depression, and anxiety due to the constant trauma of emergency hospital visits, intensive care stays, and the lifelong 24-hour care their children require.
It also found most parents felt there was a lack of support for those caring for a family member with Dravet Syndrome, which can have a toll on their mental health.
Marie said: "I am sure I have had PTSD.
"It's a time bomb, you never know when you are going to be back in an ambulance, back into hospital.
"We never knew when she would have a seizure.
"At that time, all we were offered were anti-depressants, but I didn't want to risk feeling groggy, I couldn't afford to not be on high alert.
"Much more awareness is needed of Dravet Syndrome.
"Parents need other parents to talk to, or someone who 'gets it'.
"Otherwise, you are so isolated.
"Every parent caring for a child with Dravet should be offered counselling, but I've never been offered it."
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Dr Anthony Mercier, who conducted the study, said: "Parents and carers taking part in our study shared that they have experienced major psychological distress due to the repeated trauma of dealing with seizures, emergency hospital admissions, and the fear of SUDEP.
"Almost all said they had experienced symptoms of PTSD as a result of the repeated trauma."
Professor Liam Dorris, lead researcher and clinician at the Royal Hospital for Children in Glasgow, said the study highlights the urgent need for professional support.
He said: "We hope that this study can be used to inform professional practice, and to develop packages of support, including targeted therapeutic interventions for parents of children with Dravet Syndrome and similar developmental epilepsies."
Galia Wilson, chair of trustees for Dravet Syndrome UK, says: 'Dravet Syndrome is a devastating, life-long and life-changing condition that affects the emotional well-being of all the family, but all too often this is overlooked.
'This research serves as a call to action for greater awareness among all professionals involved in the care of families affected by Dravet Syndrome – to be mindful of signs of psychological distress and trauma, and the importance of offering therapeutic interventions, such as talking therapies."
'By empowering parents like Marie to share their experiences, Dravet Syndrome UK hopes to bridge the gaps in understanding and help drive meaningful change.'
More information about the condition and some of the support available can be found on the Dravet Syndrome UK website.