Purple Day – Epilepsy Awareness

Today is Epilepsy Society’s Purple Day! Purple Day is a global grassroots event that was formed with the intention to increase worldwide awareness of epilepsy, and to dispel common myths and fears of this neurological disorder.

Hear from our wonderful foster carer, Bev below, who cares for a young boy with epilepsy. Find out how to support Purple Day here.

We have been fostering a beautiful boy with complex needs and Epilepsy for almost 5 and a half years now. 

L started having seizures at about 3 years old. They were absence seizures that lasted between 25-30 minutes long, and he was hospitalised many times during this period. At this point, L was first put on medication to help to control the seizures.

L then came to live with us just after his 6th birthday and for the first year he didn’t have any seizures at all, and we thought maybe he’d grown out of them. 
However, L started to have focal seizures when he was 7. He would just stare into space for a minute or two and would then become very disoriented. He would fall asleep afterwards and when he awoke, he’d have no recollection of them at all.

These seizures happened every 3 or 4 months.  L’s medication was increased and another one added, as the original medication was causing a deterioration in his behaviour and making him very forgetful and tired. L was slowly weaned off the original medication.

We moved from Stoke on Trent to Derby in 2019 and the seizures were about the same; every 2-3 months or so. However rather than being focal they were now changing and becoming tonic clonic, where he would initially stare, and then fall to the ground unconscious and shake. He was growing quickly and putting on weight and his seizures began to increase to 2-3 times a week and sometimes that many in a day. He was placed on 3 different types of medication to try and control the seizures. This medication slows down the brain and causes shakiness and tiredness. 

One seizure led to a visit to A&E after he had a seizure whilst playing football at school and hit the goalpost with his head. 

The seizures can happen at any time and anywhere without any real trigger.

Sometimes stress, illness, tiredness and over excitement can have an impact, but often there doesn’t seem to be any reason at all. On some occasions, L knows he is going to have a seizure and will complain of a headache, dizziness or feeling sick. We are then able to make sure that he sits on the floor or lies down so that he is closer to the floor and is less likely to hurt himself. Many times, he has fell forward and broken his glasses. 

Although fortunately he can’t remember them, L sometimes urinates, bites his tongue and injures himself during his seizures. They are still pretty scary for him though as he struggles to comprehend why he is suddenly in a different place to where he last remembered. He can become extremely emotional, very wobbly on his feet, cannot speak, or form the words he wants to and is embarrassed if he’s wet himself. He often cannot remember what has happened half an hour before or an hour following his seizure and many times will fall asleep afterwards. L’s body is sore, and he will often complain of neck and head pain and will need a dose of Calpol to ease his discomfort. A couple of hours after his seizure, L will be back to his usual self. The seizures can last anywhere from 30 seconds to 2 and a half minutes, and some are quite violent. Moving him during this time would be dangerous to him or anyone close to him. Once the shaking has stopped, we put him in the recovery position.

Despite all of this, our boy does not let Epilepsy get him down. He is the happiest child I’ve ever come across. He is now 11 and loves to swim, play football, climb, ride scooters and trikes. He loves Minecraft, drawing, painting, making models with clay and Lego. He is always singing and dancing. 

We go out and about as much as we can doing the usual things such as going shopping to the cinema or park, visiting friends or family and going on holiday. He has a set of drums and a guitar and has grown his hair because he wants to be a rock star. We encourage him to do whatever any other child can do but with the proviso that he can’t do it alone. While he has Epilepsy, L will always need someone else with him. 

L is such an amazing boy and says:

‘My Epilepsy doesn’t bother me, and I love my life and I’m very happy’