A Parent's Guide To Epilepsy Awareness Day, epilepsy final%, health%

A Parent’s Guide To Epilepsy Awareness Day

Did you know that there’s different types of epilepsy seizures?

Epilepsy is a word that’s been in my vocabulary for my whole life. I personally don’t have epilepsy, but my mum did and now my 8 year old son does.

I remember being taught about epilepsy and seizures when I was younger. I read a book and it explained that my mum may shake, foam at the mouth and may also wet herself. I was taught to keep her safe, not to move her and to phone an ambulance.

I was lucky that I only ever saw my mum have one seizure. She had lots (she now has her seizures under control) but someone else was always with her. I remember the one and only time I saw her have a seizure because it was on my birthday.

She bought me my birthday cake and all of a sudden she started to stare at me and then twitch her head. No one had explained this to me but I knew it was a seizure. I calmly moved her to the floor.

My sister was only 2 at the time and thought it was funny, until she realised mummy wasn’t doing something funny. Luckily I had a friend there to take sister away.

I followed everything I was taught. My mum didn’t want an ambulance to be called if it was less than 10 minutes, so I waited and then sat with her as she recovered. She went all child-like when she came round. Again, something no one explained to me could happen.

A Parent's Guide To Epilepsy Awareness Day, mindmap%, health%

Fast forward 11 years. I had just become a mum at 24. A beautiful baby boy – just perfect. At just 4 days old he had a weird episode. He jerked his arms and stared at me not blinking. Not in a million years did I think it was a seizure.

These episodes worsened and he was admitted to hospital. He started to have more shaking seizures and had up to 15 a day. He was diagnosed with epilepsy as part of a genetic disorder.

Most of Ethan’s seizures have not been what I have been taught a seizure looks like.

Ethan’s epilepsy, like my mums, doesn’t present itself in the same ways as epilepsy is regularly portrayed in the media.

Ethan can have lots of the following different types of seizures.

  • Absent seizures – where he stares into space.
  • Gelastic seizures – where he laughs uncontrollably for no reason,
  • Decrystic seizures – where he uncontrollably cries with an increased heart rate, increased heart rate and jerking body movements.
  • Tonic Clonic seizures where his whole body will jerk or shake and he will gasp for air.
A Parent's Guide To Epilepsy Awareness Day, DXLT7O3U0AAHQd6%, health%

There have been many times when people don’t actually recognise Ethan is having a seizure. I’ve even had a locum registrar think he wasn’t was seizing – when he was. Luckily we had a nurse who had witnessed Ethan’s seizures before and helped us fight for what Ethan needed at that time.

Ethan now has a seizure plan (VNS magnet and rescue medicines) to bring him out of seizures, that is fully tailored to him.

In the absence of a plan, here are tips for when someone is having a seizure:

  • Call 999.
  • Make sure the person is safe and loosen any tight clothing.
  • Move all objects away from them.
  • Do not put anything in their mouth.
  • Time the seizure.
  • Most importantly reassure the person throughout the seizure.

Epilepsy presents in so many ways and is really individual. Please head to the Epilepsy Foundation website to find out more about the different types of seizures and how you can recognise them.

www.epilepsy.com

www.ethansstars.com

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