The first annual International Epilepsy Awareness Day was yesterday but here at RobertsSister.com we are going to continue spreading awareness and education about epilepsy whether it is an official day, week or month.
Mainly because we love purple! (I kid – but I do love purple.)
I am pleased to bring you the story of Josh. Josh’s story, as told by his mom Laura Caldicott, is eerily similar to Robert’s. Josh is only 11 but the beginning of his epilepsy journey is very similar to what I remember about Robert’s. Laura also includes additional information she wrote about epilepsy via a link in her story.
Thank you, Laura for sharing your family’s story with us! If anyone else is interested in sharing your story about epilepsy, please leave a comment below.
Our Son: The Epileptic
Being a parent is the toughest job there is, but when your child has a lifelong medical condition it can get a whole lot harder. I have found this out for myself since my son Josh, now 11, was diagnosed with epilepsy four years ago. Ever since I can remember, I felt that something wasn't quite right with Josh but the symptoms he displayed never prompted me to consider epilepsy – a neurological disorder where intense electrical activity in the brain disrupts the body’s sensory functions. Dealing with the diagnosis has been tough for our family. This is our story.
As a baby I noticed Josh would sometimes flutter his eyelids and make involuntary jerking actions with his legs. As he grew older these symptoms would occur more often – particularly when he was overtired – and sometimes were accompanied by brief periods of 'zoning out'. Still, I put it down to his age and wasn't worried. But soon after starting school his teachers picked up on it and advised me to seek advice from a pediatrician, initially believing there could be a possibility of cognitive issues or learning difficulties.
I booked an appointment immediately and talked through Josh's symptoms. At this stage epilepsy wasn't mentioned but the doctor did ask me to take a short video of Josh's next 'zone out'. So I did and we went back. It was then the doctor referred us to a neurologist where EEG and blood tests were carried out. When the diagnosis of epilepsy came back I was stunned. Like many other people I associated the condition with tonic-clonic seizures – collapsing, shaking, convulsing. Josh just lost concentration for a little while, how could that be epilepsy? The doctor explained that the condition varies in terms of severity and that as Josh's brain matures he could indeed suffer some of these 'traditional' seizures. He asked if Josh had ever suffered a severe head injury or a brain infection such as meningitis. He hadn't but I had gone through a traumatic labor and he may have suffered a slight brain injury then. I guess we'll never know.
Back home we had to start adjusting to life with epilepsy. At seven years old, Josh was a little young to fully understand, but he knew he now had to take medication regularly and his TV/computer time was cut as we soon recognized this (as well as tiredness) to be a major trigger in inducing his seizures. One of the toughest things was that Josh was a keen swimmer and dreamed of learning to scuba dive. For a while I was terrified to let him in the water for fear of him suffering a full scale seizure and the prospect of scuba diving had to be ruled out altogether as a seizure underwater could be fatal. This upset Josh more than anything and the phrases 'it's not fair' and 'why me' were used a lot in the first year following diagnosis.
Josh is now 11 and is very responsible regarding his condition. He is accepting of the things he can't do and takes his medicine ritually. Despite this, however, the doctors were right and he has suffered two tonic-clonic seizures since diagnosis. It is a terrible thing for any parent to witness as you are completely powerless to stop it but I'm just glad that we had the epilepsy diagnosis before they happened otherwise it would have been too frightening to imagine. Also, we were prepared. We knew what to do which involved making him as comfortable as possible without moving him, supporting his head and removing anything dangerous from nearby that he could hurt himself on. Then we just have to wait for it to pass. It's something I pray I won't have to see again but sadly I fear that I will.
To any parent of a child with epilepsy, I know how tough it is and I urge you to stick with the medication, do your research and stay positive both for yourself and your child. With the right treatment epilepsy is manageable, if not curable so keep that in mind and work towards maintaining a happy, healthy lifestyle for your family.