They're awful.
(NB: This post includes screen shots from some of Dexter's seizure videos.
We seriously considered whether to show them and whether to show the videos. We don't want to scare people, but we do want to be honest.)
Before he turned six, Dexter had suffered one febrile convulsion, or seizure, when he was sick. His temperature was too high and he couldn't bring it down.
The seizure was frightening. And long.
But, it was a temperature related seizure and we were able to maintain hope that Dexter might be lucky enough to avoid epilepsy.
Many children with cerebral palsy suffer from seizures.
They were not related to fevers. These suggested epilepsy.
He was immediately placed on anti-seizure medication and was able to go home.
An electroencephalogram (EEG) was performed and the results came back showing seizure activity in Dexter's brain.
We couldn't deny it any longer.
Dexter has epilepsy.
There is epilepsy in the maternal side of the family, so we had quite a good understanding of what we were facing. But, still, our hearts broke all over again, for the extra challenges Dexter would face.
We were worried.
We were scared.
But, like we've done before, we picked ourselves up, breathed deeply and stepped forward into our new normal.
The first anti-seizure medication didn't work.
It caused Dexter's head to turn violently, from one side to the other.
Initially, we were getting him in trouble, for not using his strong neck muscles.
We didn't know.
We didn't know that he was trying his best to hold his neck still.
We didn't know it was an adverse reaction to the new medication.
We hated ourselves for not realising faster.
Dexter's paediatrician took him off the medication, as soon as we let him know.
For a few months, Dexter was off medication and we were seizure free.
They are long.
They are tonic clonic seizures; his whole body convulses through the seizures.
And, we're scared.
It only took a couple of hours for Dexter to react to the medication. He became very agitated. His muscles tightened up and we couldn't comfort him. He developed a rash across his arm and his pupils were very dilated.
As soon as his paediatrician saw him, he took Dexter off the medication.
Dexter was seizure free overnight, while in the hospital. He seems to have his most of his seizures in the early hours of the morning, but that morning, in hospital, he slept comfortably.
Dexter was sent home, with instructions to wait a few days, for the previous medication to leave his body. We were to start him on a third anti-seizure medication in a couple of days time.
They are long.
They are tonic clonic seizures.
They are leaving him exhausted.
They are leaving us in tears.
Dexter was given his first dose of the third medication. Three hours later, he was crying and complaining. He was tight in his muscles and his pupils were dilated.
He developed some rashes. It took Dexter about thirty minutes to settle.
We hate watching this. We hate seeing him upset and crying.
We hate that he hurts.
We hate the seizures.
We feel hopeless and lost.
And scared.
At the moment, we are watching Dexter's every move. We notice every jerk of his hand. We watch, to determine whether the movement was from his dystonia or the beginning of the next seizure.
We would love Dexter to be able to tell us. We would love for him to have the words to explain what hurts and what he needs.
But, he can't.
We have to guess.
The oldest of Dexter's sisters is worried. She hears Dexter, when he has a seizure. He makes a high-pitched noise at the start.
She realises we are watching him more closely.
She hears him crying as he reacts to the new medications.
She feels our stress.
We have protected her, in that she hasn't seen the footage of her brother having a tonic clonic seizure. But, we have told her what it looks like. We have used the word 'seizure'. She doesn't really understand what it means and probably won't, until she sees one. There is a chance she will be the one who sees Dexter having a seizure and will need to get help for him.
She knows what to do.
We wish she didn't.
We wish she had no idea and that she was a happy little girl, enjoying her holidays. But, that is not her 'normal' and she is very aware of Dexter and the challenges he faces. She has been with Dexter, through his cancer fight, his surgeries and his hospital stays. We make sure she is happy and relaxed, but her home is often filled with heartache and anxiety and we can't hide it from her.
This is one of those times.
We are not sleeping, because we are waiting for Dexter's next seizure. We need to know we will be there, to stand beside him and reassure him, while his little body convulses and convulses and convulses.
His mother sleeps with a baby monitor beside her. She sleeps on the very edge of her bed, facing the monitor. It is positioned on the edge of the bedside table and is turned up as loud as possible.
She hears every sound Dexter makes.
Dexter is still having seizures.
Epilepsy is now a serious part of Dexter's life.
During the last week, Dexter has had 13 seizures, that we know of. They ranged in time from one minute to six minutes. All of the seizures were tonic clonic seizures (full convulsions). He is exhausted, but still showing strength and incredible resilience. He is still smiling for us and reaching for our hands.
We are exhausted. The seizures have all been at night. We feel numb. Empty. Scared. The Noisy Sister is worried. The Littlest One doesn't really understand. Yet.
We will become stronger, as the days go by, but for now, we are a little broken.
Again.
When Your Heart Aches with Sadness
When Six is too Young to have a Disability
$37,000 and a Van
Mum was Crying in the Ball Pit
What a Dollar means to Dexter
When Wheelchair Stops Being a Dirty Word
Stuck in a Rut
Embrace the Lion
Open Letter Thanking Parents for the Parties
Kindergarten in Review
Dexter's First Month
Dexter's Vision
Dexter's Cerebral Palsy
Dexter's Cancer
Who is Dexter?
Return to Home page
Find me on: facebook twitter instagram pinterest youtube