Epilepsy Awareness Day

I will always remember Friday 4th May 2018. Because of that day I write this post on Epilepsy Awareness Day.

I remember...

I remember Micah calling out to me that night and asking for a drink. He felt warm but then he always does.

I remember Noah (his older brother) calling out to us around the normal time in the morning, only this time he said he thought Micah looked as if he was going to be sick.

I remember running into the room and seeing Micah on his bed in an odd position facing the wall, the closer I got the more I realised Micah was jerking ever so slightly, eyes wide open and dribbling at the mouth.

I remember knowing it was a some kind of seizure, telling Matt to ring 999 and then moving Micah onto my lap and holding him.

I remember Micah was breathing but felt stiff and wasn't responding to our voices or his name.

I remember praying for Micah over and over again 'Lord, please, look after his brain' whilst holding him and trying to reassure him not knowing if he could hear me.

I remember being asked how long the seizure had been going on for and at some point starting to time the seizure.

I remember trying to stay as calm as possible because Noah was in the room.

I remember three paramedics entering the bedroom asking us what his name was and for me to put him on the floor and to get a pillow for his head.

I remember the paramedics talking to Micah in such a kind and tender way and how reassuring they were to us despite there being a real sense of seriousness because his seizure was now going on for about 10/15 mins, if not longer.

I remember the rescue medication they gave to Micah not working and them having to consider giving him more.

I remember going in an ambulance for the first time and whilst Matt tried to carry on as normal with our other son, getting him changed and giving him breakfast before school, Micah was blue lighted to the hospital.

I remember arriving in Resus and being met by a number of hospital staff, maybe 6 or so and the paramedics, the handover, watching all of them get to work. Giving Micah oxygen, trying to put in cannulas, sticking patches onto his chest,  hooking him up to machines, asking me questions about what had happened and in amongst the busyness making room for me to be by his side. 

I remember Micah sleeping for so long once they had managed to stop the seizure.

I remember one of the paramedics coming back to check on Micah a few times including much later in the day when we were up on the children's ward.

I remember coming back home from the hospital not knowing if this was a one-off seizure or if this was the start of something more.

I remember setting my alarm every couple of hours through the night to keep checking on Micah.

I remember dropping Micah off at preschool, explaining to them in tears what had happened and then returning to work not knowing and always thinking that he could have another seizure when I wasn't with him.

                                  
I remember when we took Micah for an EEG and the results being positive for

abnormal levels of electrical activity in the brain.

I remember all the different times and places Micah had seizures.

I remember many times not knowing when the right time was to ring for an ambulance.

I remember hearing and reading that with most people, a seizure should stop
by itself after a few minutes but also knowing that this hadn't been the case with Micah.

I remember seeing and learning that Micah's seizures didn't always look the
same.

I remember Micah not looking like Micah when he had seizures. He looses all colour from his face but also his personality and spark fade.

I remember not knowing at what point exactly to give Micah emergency medication.

I remember filming Micah when he was having seizures because it was hard to describe them to the paediatricians sometimes.

I remember being told that Micah most likely had Epilepsy as he had now had
more than one seizure.

I remember being told about the different epilepsy medications and feeling so
anxious and overwhelmed about all the possible side effects.

I remember Micah missing his first day of Reception and Year 1 because of seizures.

I remember feeling such responsibility that we had to now give Micah medicine everyday.

I remember having to explain to people the different signs to look out for if Micah was having a possible seizure and what to do in terms of giving him emergency medication.

I remember having long periods of time when Micah didn't have a seizure, feeling myself slightly relax only for him to have another one.

Still today...

Micah has had epilepsy for coming up to 4 years now, and although his seizures are being really well managed by the medication he is on, he still can have them. Whether that is because he is over-tired, poorly, or something else, we are not fully sure, But whenever he does, it takes me right back to that very first one. I will always remember that very first one. 

And still today 4 years on if Micah doesn't come into our bed in the morning or if he is quiet and I have to open his bedroom door to go and check on him, I prepare myself to see him how I saw him on that Friday morning on the 4th May 2018. 

Epilepsy awareness facts

• Epilepsy is a neurological condition which means it affects the brain. It is also a physical condition because the body is affected when someone has a seizure.
• There are over half a million people with Epilepsy in the UK, so around 1 in 100 people.
• Over 40 different types of seizures have been identified and not all seizures include convulsions or jerky body movements.
• Epilepsy is usually only diagnosed after the person has more than one seizure
• Most people with Epilepsy do not have seizures triggered by flashing lights.

How to help someone having a seizure...

STAY with the person and start timing the seizure.

Keep the person SAFE at all times.

Turn the person on to their SIDE if they are not awake and aware.

For more information about Epilepsy please go to the following websites:

www.epilepsy.com 
www.epilepsy.co.uk
www.epilepsysociety.org.uk