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.
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| 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.
Donations can be made directly to EAA here:
https://www.epilepsy.org.au/support-us/make-donation/donate-now-form
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.
