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Trying to Understand Epilepsy

by Holly Bramwell on September 03, 2019

I am the first to admit that as a parent of a child with Epilepsy, I am still trying to understand what it is. I know I will never know how it feels for Finley when he has a seizure and as he is non-verbal, he can't tell me and that makes me feel helpless at times. I think that's how most people witnessing a seizure feel. It can be scary.

Since being diagnosed, he has been on medication - the first one didn't work completely for him but we are now combining two medicines and fingers crossed, it seems to be controlling his seizures at the moment. I still feel fearful though, every time I put him to bed. Out of all his disabilities, this is the most frightening diagnosis and it really can happen to anyone, of any age. 

 There are different types of seizures associated with Epilepsy. The most common one that comes to mind when people mention the word Epilepsy is a 'Tonic-Clonic Seizure.' This type of seizure involves the person going stiff, losing consciousness, resulting in them falling to the floor and convulsing. They may also go blue around the mouth, lose bladder or bowel control and bite their tongue.  Here are some tips from Epilepsy Action on how to help someone having a Tonic Clonic Seizure:

  • Protect them from injury (remove harmful objects nearby)
  • Cushion their head
  • Time how long the jerks last
  • Aid breathing by putting them into the recovery position once the jerking has stopped
  • Stay with them until they are fully recovered
  • Be calm and reassuring 

When to call for an ambulance:

  • You know it's their first seizure or
  • The jerking continues for more than five minutes or
  • They have one tonic clonic seizure after another without gaining consciousness in-between or
  • They are injured during the seizure or
  • You believe they need urgent medical attention

 

Although suffering with Epilepsy can feel quite solitary,  there are some great support networks out there for those suffering with Epilepsy and for parents and carers too. Here are just a few that can give some guidance, reassurance and educate people about Epilepsy:

Epilepsy Action

Roald Dahl's Marvellous Children's Charity 

 

You can also raise awareness to others that you have Epilepsy. Wear or affix the tag to a bag. Available from the online store 

Please don't suffer alone.

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