The family of a little girl suddenly diagnosed with epilepsy thank nurses from Roald Dahl’s Marvellous Children’s Charity for supporting them through the difficult time. AASMA DAY talks to Esther Maddock about her daughter Beth’s story
Watching her daughter Beth during the half term holidays in 2016, mum-of-five Esther Maddock noticed she was having episodes where she was unresponsive and vacant for up to 30 seconds at a time.
Esther, 40, who lives in Longridge, near Preston, explains: “I noticed Beth zoning out and doing something strange with her eyes.
“She was completely unresponsive and it was quite unnerving. It was happening every 15 to 20 minutes for about 30 seconds at a time and most days it happened up to 100 times a day.”
After taking Beth, then eight, to the doctors, she was taken to Royal Preston Hospital where she was diagnosed with epilepsy.
The consultant confirmed Beth, now 10, was having what are referred to as absence seizures – where the person appears to be vacant or daydreaming during a period of abnormal brain activity.
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Beth also experienced some right-sided jerkiness and twitching at other times. Beth’s epilepsy was confirmed via an EEG.
There was concern about the sudden onset of the seizures and the medical team wanted to check for any abnormalities as well as a possible tumour, a cyst or a nodule on the brain.
It was a very scary time for the family. and it was a great relief when the MRI ruled these out and concluded that the seizures were a result of an anomaly.
Before the seizures, Beth had already had some medical problems with half a kidney having been removed when she was four years old and, as a result, she hadn’t been putting on weight. She’d had a tough time before the seizures started.
Following the results of the MRI scan, Karen O’Neill, Roald Dahl Paediatric Epilepsy Nurse Specialist at Royal Preston Hospital, became Beth’s nurse and has been supporting the family ever since.
Beth responded poorly to the medication, and it affected her behaviour. She changed from being the family’s “little sunbeam” to being hysterical and hyperactive.
Esther says: “It felt like we had lost our little girl.”
As Karen witnessed Beth’s difficult behaviour at home, such as climbing on furniture and up curtains, she was able to confirm mum’s concerns to the consultant.
Esther explains: “Karen was my advocate, I would not have had the confidence to deal with the situation without Karen at my side.”
Getting the medication right for Beth has been challenging. Two months ago, Beth had a big seizure in the night. Karen was her first port of call and Esther says it was helpful to talk things through with her Roald Dahl nurse and how empathetic and practical Karen is.
Esther, who also has children Joy, 12, Noah, eight and four-year-old twins Charis and Joel, says: “Karen is a great support, she makes a big difference.”
Beth needed her medication to be changed for a third time as she was not responding. It was a horrendous year for the whole family. Going to school was a challenge. Esther says: “Karen would come whenever we needed her. Karen visits the school to give talks to the staff and children. She even arranged a workshop at the school for the staff about epilepsy with a focus on Beth’s case.
“Karen is always so willing to help. She makes a massive difference for us with practical advice as well as emotional support.”
Karen sits in on their appointments with the consultant and then afterwards as there is so much information to take in and she explains and answers any questions.
Esther says: “I can’t imagine how we would have coped without Karen. She is very experienced, I feel I can trust her as she knows what she’s talking about.”
Esther has also spoken about how practical and unflappable Karen is, and how she is always thinking of ways to support the family.
Beth is one of five children and, although the twins were only very young when she was diagnosed, her other two siblings Joy and Noah found it very worrying.
In particular, the effect of Beth’s reaction to her medication had a big impact on them as their happy sister had become feral and lashed out a lot.
Karen was really good with Beth’s siblings explaining it all in a way they could understand.
As well as Karen, the family have also been supported by Roald Dahl nurse Jennie Read.
Esther says: “Both Roald Dahl nurses at the Royal Preston Hospital, Karen and Jennie, are so dedicated.
“It’s not a job for them but a calling. They genuinely care about their patients and families.
“Beth is now full of energy, always giggling and dancing. It is good to have our little girl back.
“Karen stepped into our lives and touched our family beyond our expectations. She knew how to support us best. We can’t imagine how we would have coped without Karen. She has been amazing.
“Karen makes us feel that we are her only family. Beth has formed a special bond with Karen. She always gives Beth a hug. It feels as though they are sharing the burden of the diagnosis of epilepsy together.”
Karen and Jennie, the Roald Dahl paediatric epilepsy nurse specialists, say: “We have been in post as Roald Dahl Paediatric Epilepsy Nurses at Lancashire Teaching Hospitals for the last four years. We are passionate to support children, young people and their families affected by epilepsy.
“The diagnosis and indeed living with epilepsy can have massive implications to quality of life. As a team we are passionate to see children and young people reach their potential despite their diagnosis.”