When you are looking after a child with severe epilepsy, every waking minute of every day and every night is consumed with the anticipation of a seizure. Sleep deprivation becomes the norm. Night-time seizures are dangerous and there is a risk of death (SUDEP).
It is not unusual for children to sleep with their parents. Many parents check on their children throughout the night and the loss of sleep and the stress for the whole family is immense.
But there is an answer. For those children who have continual repetitive body movement for seven seconds or more as a result of a seizure, MMT will provide an epilepsy alarm. The epilepsy alarm provides peace of mind and allows many families to have a proper night’s sleep for the first time in years.
How it works – the potential life saving wireless epilepsy movement sensor bed alarm sits under the mattress of the child’s bed and alerts the parent or carer to a seizure while sleeping. The alarm makes a piercingly loud noise if a sensor detects violent movement in bed, enabling parents to act quickly and put the epilepsy sufferer in the recovery position and administer medication as necessary. The alarm must be used in conjunction with your own monitoring.
Parents can apply directly to the Muir Maxwell Trust for an epilepsy alarm, or go through their health visitor, community nurse, epilepsy nurse, GP or consultant. They will receive a voucher from the Trust, which requires to be countersigned by a medical professional who can confirm the diagnosis of epilepsy. The voucher is then returned to the Muir Maxwell Trust and we will forward it on to the manufacturer and the alarm will be delivered in approximately three to four weeks.
The Muir Maxwell Trust is dependent on the generosity of its supporters to fund these alarms. Often there is a waiting list but we will get the alarm to you as soon as we can.
Each month up to 40 of these epilepsy alarms have been distributed to families who are dealing with night-time seizures. Hundreds have been distributed by the Trust since 2003, but there are 15,000 children with complex epilepsy alone, so there is a long way to go.
To request your voucher for Sensorium epilepsy alarm please email our Family Liaison manager, Ann-Marie Nelson at firstname.lastname@example.org with the following information:
Your child's name and date of birth
Parent's/Carer's name, full postal address and contact telephone number
A brief description of your child's seizures - NB they must have nocturnal seizures with repetitive body movement of 8 seconds or longer.
Alternatively, you may prefer to call Ann-Marie at the Trust's office during business hours Monday/Friday, 9am to 5pm on 0131 273 5256.
The Trust does not means test for movement sensor alarms but donations are gratefully received.