Sunday, 13 November 2016

Hopefully it's JUST epilepsy

2016 will be a year to remember, but not in a great way. Yeah, lots of celebs died and then there was Brexit which was then Trumped by the US elections, but really for us they aren’t even on the radar. This year has been hard in a way that I could never have imagined.

I can’t pinpoint when it all started to go wrong. In the middle of the night I would feel my wee boy sleeping next to me. His warm cheek against my arm, his milky breath across my skin. It would be all so peaceful and then he would start to move. A hiccough? A baring down? A vivid dream? It was so subtle that it was easy for me to dismiss and fall back to sleep.

It wasn’t until I saw my boy have a seizure in the daylight that I knew that something was wrong. Within weeks they became longer, more full on and more frequent. I have never felt more helpless in my life. I could do nothing for him while they were happening. I could hold him and talk to him as his brain suffered through these intense electrical storms. His body would spasm, his eyes would go vacant. There were times when one side of his face would drop like someone with Bells Palsy. When they stopped he would fall into a restless sleep for hours. All I could do was hold him.

EEG #5

Getting help was hard, really hard. I won’t go into all the details of the struggles we face just trying to get a diagnosis, but one thing we obvious. There is a massive information void when it comes to epilepsy and general medical staff are often hanging out in it.

During the time we were desperately seeking help, a few people said to us “Hopefully it is JUST epilepsy.” Yep sure. Epilepsy is preferable to say a terminal brain tumor, but it is far more sinister than what people perceive.

Although our boy’s seizures look quite subtle, nothing like someone having a tonic-clonic seizure (formally known as Grand Mal), they were incredibly dangerous. He was diagnosed with a form of seizure called Infantile (Epileptic) Spasm. It affects the entire brain and can cause developmental delays and even permanent disability if left unchecked. 

Epilepsy in general can have a massive influence over the lives of those that have it and their families. It is not just the seizures themselves either, it is the disordered sleep, the pure exhaustion, the mood alterations, the side effects of the medications and the risk of Sudden Unexpected Death in Epilepsy (SUDEP). Many aspects of life change when epilepsy steps in.

There was no “just” in his epilepsy diagnosis. Even now, with the seizures under control, the lad’s epilepsy influences many of the decisions we make every day. There is an enormous question mark as to what the future will look like for our boy. We are doing everything in our power to give him the best chance possible (send me a message if you want to know what those things are), but we just can’t know how this is pan out for him.
This Sunday 20th November, we are holding an E-Tea to raise money for Epilepsy Action Australia. We are hoping to raise $500 to help them to continue to provide services to those living with epilepsy and to fund education programs. These services are vital as nearly 800,000 Australians will be diagnosed with epilepsy at some stage in their life.

PS. This was a really difficult blog to write.  We are currently 20 weeks seizure-free but not a day goes by that I don’t worry that the meds will fail. I watched one of the videos with T’s neurologist last week and I am still shaken by it.

1 comment:

  1. Thank you SO much for this post. I feel like I am a tiny boat in an ocean of information as I try and navigate my 5 yr old daughters diagnosis. SUDEP has definitely got me on edge and I find her mood, concentration, behavior and tiredness all challenging to handle. She said to me that it was like "my body is dead but my brain is awake and I cant move myself but my brain knows I am not dead. I try and wake up but I cant and that makes me scared. When you talk to me and cuddle me, I can feel you and your voice sounds far away because there is electricity buzzing in my ears" From the mouths of babes :( Such hard times, and yes, so grateful it is not a brain tumor, but still so many hurdles. Wishing you so much luck as you walk this journey. I hope you know you are not alone and that you can find some local support groups (or online). Warmly, Suzanne and E