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
Laura Caldicott
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.
Subtle
signs
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.
Diagnosis
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.
Moving forward
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.
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