Epilepsy doesn’t care that that you just need to sleep.
Epilepsy doesn’t care that it makes us all weep!
As we get closer to Purple day I thought I would share my experiences of the nasty neurological condition, Epilepsy.
It’s true when they say keep your friends close but your enemies closer, or as Sun Tzu said ‘Know your enemy and know yourself and you can fight a hundred battles without disaster’, as I frantically try to get to know everything I can about Epilepsy to try and keep myself one step ahead of the vicious condition.
When Zachariah was just a few days old he started with jerky limb movements, to be honest I didn't really think anything of it, I just thought he was a jumpy baby.
It was the midwife who spotted it and raised a concern suggesting that I brought it up with a doctor. Following this we had MRI’s, EEG’S and he was monitored closely.
However, after numerous negative results, it wasn’t until he was 18 months old that he was officially diagnosed with Epilepsy and started on his medication. I was devastated!
Although I didn’t know much about it, I knew enough to be scared and worried for my baby boy.
After googling his diagnosis of Lissencephaly I had more insight and found that epilepsy is very common in children with Lissencephaly and is one of the main causes of these children having a shortened life…
Great! One more thing to try and attack my boy.
At this point I’ll be honest, I just got swept away with getting him on his meds, getting the epilepsy under control and not letting it interfere with Zachariah’s enjoyment in life.
I didn’t really look into the type of epilepsy he had or research alternative drugs, I just put my faith into the doctors and hoped that we were on the right path.
Fortunately the meds worked, but as some of you may know from a previous blog, it changed him, Zachariah became more grumpy and restless, but the bonus was there were less seizures!
We are now coming to the limit of his current meds and they need reviewing, I am so worried as I have just about got used to the routine of giving him Epilim twice a day, and now we may be facing new drugs, new dose and new side effects!
But reality is he's outgrown them. His seizures have become more aggressive, more frequent and causing more of a disturbance!
Just last week, we had friends over, to set the scene, we had trolls movie on, we were all singing along, having lots of fun and in that moment it was so special.
However this was quickly interrupted by an aggressive seizure which caused him to gag and splutter on his own sick!
Being in the kitchen I didn’t spot it straight away but my friend quickly called me in to attend to Zachariah.
It was probably the scariest, most upsetting seizure I have witnessed and it made me so so angry!
Zachariah was in a happy place, enjoying the company of friends, but epilepsy didn’t care at all, it just came racing in to take that moment away.
This is just one moment and just one seizure that I share with you, but in reality Zachariah faces lots more in his daily life, some we catch, some that go unseen, and they range from absences to partial complex seizures.
It is now that I am getting more involved as I am feeling like it is getting out of control and it isn’t as simple as starting him on meds.
Epilepsy is our enemy but we will not let it defeat us!
On 19th March I will be running a 10k, raising funds for the charity, Epilepsy Action and to fund Zachariah an Epilepsy Watch to give us peace of mind!
Epilepsy doesn’t care!