Monitors

Once you have registered with us, via our Join Us page, you may be eligible to apply for the night time monitoring fund detailed below.

Since 2009 Dravet Syndrome UK have been funding Pulse Oximeters for our families as a way of monitoring Dravet children and adults throughout the night. Following feedback from our families we have come to the conclusion that the monitoring system for each family is a very personal choice and what works for some families may not work for others.

Feedback on the Pulseoximeter

The feedback we have received is that they can be tricky to use with very mobile patients or those with challenging behaviour who may not tolerate the probe being attached via a wire.

Some families have said that they pop the probe on once the child/adult is asleep so they are less aware of it being on.

Families have said they not only use them through the night but also used them through the day or when a seizure or activity presents to monitor the oxygen levels and heart rate at the same time.

Feedback on the Summer Video Monitor

The feedback we have received is that it has given families peace of mind, particularly for those who can not get along with other forms of monitoring.

Whilst this is not a seizure alarm this is a great visual tool to monitor children or adults when they are in a different room and the portable screen has allowed parents to see if assistance is needed rather than just an audio monitor. These monitors are often used alongside other seizure alarms.

Feedback on the Medpage

The families didn’t need to worry about their child moving off the sensor during sleep and causing a false alarm or the sensor not picking up a convulsive seizure as the Medpage monitors the whole sleeping area.

This is movement detection only and they do not alert to the non-convulsive types of seizures that most Dravet patients experience.

Families have said this has been easy to set up and after a few nights’ with adjustments to set it to the individual child/adult body weight and normal sleep movements.

Families with younger children/babies have said this has been great as it turns the whole sleeping area into a sensor so if they move around a lot in their sleep they did not have to worry about them rolling off of the sensor.

In 2015 we invited two families with younger children to trial the Medpage. Both found it to be much more suitable than the Emfit. The families didn’t need to worry about their child moving off the sensor during sleep and causing a false alarm or the sensor not picking up a convulsive seizure as the Medpage monitors the whole sleeping area.

 

With this is mind we have extended our Pulse Oximeter Programme and are now releasing the Seizure Monitoring Programme. Families can apply to us for their choice of monitor from the following:

 

As with our other assistance programmes the Night-time Monitoring Programme will not be means tested, but families will have to provide a letter confirming diagnosis. Families can only apply for one type of monitoring system and this programme is also a rolling programme so that applications will be considered at all times.

In addition to the above you can also apply for a Fingertip Pulse Oximeter. These monitors are not alarms but they are ideal to monitor sats (oxygen saturation levels in the blood) during a seizure and when you are out and about.

Apply online for the Monitoring Assistance Fund