‘It was very scary for us and for her’
The epileptic seizure continued for three or four minutes. It took close to quarter of an hour before she came around.
“It was very scary for us and for her,” her mother Catherine said. “It was a very, very strong seizure, more severe than anything she had before or since.”
Because of the growing severity of her seizures, Maria’s doctors are anxious to monitor her epilepsy in hospital to see what options may exist to help improve her condition. However, the country’s only two epilepsy monitoring units (EMUs), at Beaumont Hospital and Cork University Hospital, remain closed due to a lack of funds to staff them.
Maria, 30, first had a seizure at 20 months, when she suffered febrile convulsions while running a very high temperature. She was hospitalised, but the convulsions continued after the infection cleared. She continued to meet her developmental milestones even though her seizures became more frequent and more pronounced.
At the age of nine, Maria, from Glasnevin, Dublin, had brain surgery for a slow-growing tumour, the likely main cause of her seizures. Her mother thought the seizures would stop. “She went six weeks without a seizure but then nocturnal seizures returned,” Catherine said.
Maria, who has an intellectual disability which Catherine attributes to her epilepsy, continues to suffer regular seizures but can’t understand why.
“It’s very hard to explain to Maria why, when she is taking all the medication, that the seizures still continue. It is very hard for her to live like that, and it’s very hard for me, as a parent, to see what she is going through,” Catherine said.
Maria has previously fallen during a seizure and had to get stitches to her jaw. Her mother is worried about her future and her quality of life, especially if the more severe seizures continue. Catherine feels if Maria could be admitted to an EMU then maybe more effective medication could be prescribed.
This cannot happen as long as the units remain closed. Maria has been on a waiting list for monitoring since Aug 2011. Her mother worries that she will be forced to travel for treatment overseas.
“If she had the monitoring, at least it might give her some hope that maybe something could be done. It’s such a shame that the units are lying idle. It doesn’t make any sense not to have them open for the sake of hiring half a dozen staff,” Catherine said.
