20. Sep, 2016

Our Story hasn't ended! It probably never will with Epilepsy.

When your child has epilepsy, it’s a constant weight on your mind. Without fail, the moment that weight eases off, a seizure will happen – just to make sure you know it’s ...there. People with epilepsy die prematurely at a higher rate compared to the general population. The most common cause of death from epilepsy is "sudden unexpected death in epilepsy", known as SUDEP. 

We were in the Epilepsy Centre Locally. Video Telemetry and Monitoring. One night we lasted. One night Lewis lasted. You see, he couldn't cope and had enough. All he's known is hospitalisation and test after test. I spoke with him, so did family. The Clinical Staff spoke with him to no avail.

Simply this Boy had had enough. His decision was final. He's 16 years of age. I'm told he is capable of making good decisive decisions. #autism #pdd-nos #complexneeds 

The meltdown was kicking in. He was extremely distressed. After much deliberation, we all decided that he needed to be home, with familiarity.

So I ask? When is enough! When is medical interventions and tests enough for the individual? When does Epilepsy ever stop causing the Patient distress. My answer is - it doesn't in my view.

My Son seems to have decided himself, now is time to stop receiving investigation's. He said he knows the seriousness of it all. I don't think he really does know, as he's in his own little world.

You see, his next Tonic Clonic Seizure could be his last. He sustained injuries again 2 weeks ago. Paramedics were out. His blood sugars dropped very low, immediate threat to life. The body and the muscles go through tremendous insults in the Seizure.

We carry on regardless in this world of Epilepsy. With all the environmental factors and tumultuous hurdles ahead.  He's happy at the moment. This moment realtime. 18.14 pm, 20th September 2016. All a mum can ask for.

Keep strong everyone. The Cure is out there for Epilepsy. It's simply Globally underfunded for Research.

Julie x