In this week’s blog I wanted to share a personal experience with you in hopes of bringing awareness to Epilepsy in Children. As many of you may or may not know our 16 year old daughter has two types of Epilepsy; Generalised Epilepsy and Photosensitive Epilepsy.
March is the month of Epilepsy Awareness here in Australia with March 26 being Purple Day.
In the past week our daughter’s seizures returned with a vengeance after a 115 day siesta, to say the least it was very heartbreaking for her and us. Epilepsy can lead you into a false sense of security when the seizures are controlled. I always remember her neurologist saying to us “never become complacent, even when the seizures are quiet, as Epilepsy is always there just under the surface and will re-surface with a vengeance”.
To give you a better understanding of what having seizures means for a kid, first lets talk about the learning deficits. If you can imagine losing 10-20 seconds of time many times a day and think about how that would affect your day, that is what our kids are dealing with in trying to attend school every day, keep up with the school work and get some resemblance of an education.
On Friday Gabby had what is called a Tonic Clonic seizure (Grand mal seizure) which lasted for 3 mins, this all happened at school with people who have never experienced it before, so really didn’t know what to do. The best laid plans go out the window in a moment of panic, I had strict instructions on what needed to happen but unfortunately they did not recognise what was happening. A big reason for working on a better awareness around childhood epilepsy.
There are over 40 different types of seizures, Gabby has three different types within her two types of epilepsy. Absence seizure, which is her becoming unconscious and flickering of her eyelids and generally lasts 10-20 secs. Absence seizure – staring, which is her becoming unconscious and staring into space and generally last 10-20 secs and tonic clonic seizure, stiff arms, shaking legs, eyes rolling back (this type of seizure is more recognised by those with no experience with epilepsy or seizures).
Each child is different in how their seizures present but there is a set of rules in dealing with someone who is having a seizure and below I have shared with you “First Aid for Seizures”.
The aftermath of a seizure
Post seizure can be a tough time for the kids, some come out of it fairly quickly and others stay in what is called “postictal state” for some time.
“The postictal state is the altered state of consciousness after an epileptic seizure. It usually lasts between 5 and 30 minutes, but sometimes longer in the case of larger or more severe seizures, and is characterized by drowsiness, confusion, nausea, hypertension, headache or migraine, and other disorienting symptoms.”
Now the seizure is over and so is the postictal state we get back to life as normal as possible, what does that look like? For us it is filled with anxiety and supporting Gabby to cope with her daily seizures once again, luckily for us I am a trained professional counsellor and eft coach, so I have the tools to support her.
The important thing to understand is Epilepsy is so much more than just seizures, it is the aftermath and dealing with the fear of seizures on a daily basis.
Epilepsy Family
So, how do we cope with this as a family? Gabby is the one suffering with the seizures and if we could we would certainly take it away, but for us as a family there are hard times that each of us have to cope with. My younger daughter Grace struggles sometimes to deal with Gabby’s epilepsy, it frightens her and she is constantly worried about her sister. As awful as epilepsy is, it has brought our two girls together and they are extremely close.
As her mum I also struggle with anxiety and constant worry about her and what her life is going to be, I did become complacent in a seizure-free period so this past week has been very tough. As her dad, Alex just wants to protect her and take it away, but obviously he can’t. He commented recently, “what the hell do we do now?”.
For us having support around us as we go through this journey is paramount to our own emotional and mental wellbeing, we hold each other up as much as we can and having my parents to support us is very comforting.
What can you do to help?
As I mentioned earlier this month is fundraising month for Epilepsy in Australia, there are a lot of events happening around Australia on March 26, get involved and if you are unable to, a donation would be amazing. I have set up a fundraising page for Gabby and if you are in a position to support children with Epilepsy, it would be very much appreciated. These donations go to Epilepsy Queensland.
https://purpleday.everydayhero.com/au/find-a-cure-for-gabby
Thank you for your part in spreading the word about Epilepsy and helping with my awareness campaign.
Written by Nicole Ivens
Nicole Ivens is an experienced Professional Counsellor, Wellness Coach and EFT Practitioner.
Nicole helps women to reduce fear and anxiety and take back control of their life by kicking fear to the kerb and getting back in the driver’s seat of their life.
Learn more about Nicole www.calmyourmindwellness.com.au/about
