seizures are scary
/
When we adopted Zoe in 2012, we knew the odds were high that she would have seizures. Given the locations of the brain damage causing her cerebral palsy, epilepsy is a common co-diagnosis.
So it wasn't completely unexpected when we had to call 911 during a massive grand mal seizure only four months after flying home with her from Taiwan.
What was completely unexpected? The child seizing... it wasn't Zoe.
It was Robbie.
Robbie, who had no indications for epilepsy, seized for more than 15 minutes before the paramedics stopped it with meds.
Robbie, who was typical in every way until then, spent Thanksgiving in our local children's hospital.
Robbie, who always slept well, had an EEG that showed abnormal activity during the first few hours of sleep.
His eventual diagnosis was Benign Childhood Epilepsy.
We were told another seizure would come.
We cried.
No, that's not quite right.
We sobbed.
We rarely slept, waiting for the next seizure.
I started anti-depressants.
It was more than we could bear.
But God.
He was faithful, and He brought friends alongside us through tests and with coffee and in mingled tears.
Since that first one, Robbie has had some partial seizures but no more grand mal ones. We've been on and off a few different meds, but he's been med-free for a year now. We've found his seizures to be so rare and manageable that it's not worth medicating him at this point.
We'll revisit that as he grows, and we'll hope that his doctor is right in expecting him to outgrow his epilepsy around adolescence.
Which probably makes me the only mama who is looking forward to her little boy hitting that stage.
And we'll pray and trust.
So it wasn't completely unexpected when we had to call 911 during a massive grand mal seizure only four months after flying home with her from Taiwan.
What was completely unexpected? The child seizing... it wasn't Zoe.
It was Robbie.
Robbie, who had no indications for epilepsy, seized for more than 15 minutes before the paramedics stopped it with meds.
Robbie, who was typical in every way until then, spent Thanksgiving in our local children's hospital.
Robbie, who always slept well, had an EEG that showed abnormal activity during the first few hours of sleep.
His eventual diagnosis was Benign Childhood Epilepsy.
We were told another seizure would come.We cried.
No, that's not quite right.
We sobbed.
We rarely slept, waiting for the next seizure.
I started anti-depressants.
It was more than we could bear.
But God.
He was faithful, and He brought friends alongside us through tests and with coffee and in mingled tears.
Since that first one, Robbie has had some partial seizures but no more grand mal ones. We've been on and off a few different meds, but he's been med-free for a year now. We've found his seizures to be so rare and manageable that it's not worth medicating him at this point.
We'll revisit that as he grows, and we'll hope that his doctor is right in expecting him to outgrow his epilepsy around adolescence.
Which probably makes me the only mama who is looking forward to her little boy hitting that stage.
And we'll pray and trust.
~+~
If you're interested in our posts about epilepsy...
The story of his first seizure:
his diagnosis
on trusting God with epilepsy
hallelujah, all I have is Christ
on aiming for routine to avoid partial seizures
hoping to find a pattern to our lives again
on aiming for routine to avoid partial seizures
hoping to find a pattern to our lives again
on having an EEG as a small child