Well, now we're in the land of seizure disorders.
/
In the past few days, whenever anyone has asked how they can pray for us, I've asked one thing: please pray that if anything abnormal is going on in Robbie's brain, it will show up on the EEG. Knowing the test can be normal even on kids with seizure disorders, I didn't want to get false normal results.
So, the EEG was today.
So, the EEG was abnormal.
I know that we are blessed that the results were clear. I'm just not feeling very blessed quite yet.
Because while we're thankful for clarity in tests so far, I hate that my boy has a preliminary diagnosis: Benign Childhood Epilepsy. Benign, meaning that it's not the result of a tumor or anything like that. Childhood, meaning there's a good chance he'll grow out of it. And Epilepsy, meaning that our boy's brainwaves go a little off-kilter from time to time and a seizure results.
In other words, he will have another seizure.
The good news is that most kids with this type of epilepsy outgrow it, and this kind of seizure is usually limited to sleeping hours, primarily the first three hours of sleep, which means we don't have to feel constantly on guard that the next one could come at any minute.
(On that note, any recommendations of 10pm TV shows? I usually steer clear of those to try to go to bed early, but Robbie is usually asleep at 8pm, which means one of us will be staying up until at least 11pm to monitor him each night... which means more watching of 10pm shows, so hit me with your recommendations!)
We're still rolling with the butt valium as our only med, only to be administered if a seizure occurs. We're probably going to add a daily drug regimen once we nail down what's happening, but first we get a sedated MRI next week and an ambulatory EEG the following week. (That last one is the same sort of thing we did today, with 25 electrodes on his head to monitor brain activity, except all those electrodes will stay on for 48 hours of monitoring.)
So we wait. And we learn more. And we trust God.
This is our new normal.
So, the EEG was today.
So, the EEG was abnormal.
I know that we are blessed that the results were clear. I'm just not feeling very blessed quite yet.
Because while we're thankful for clarity in tests so far, I hate that my boy has a preliminary diagnosis: Benign Childhood Epilepsy. Benign, meaning that it's not the result of a tumor or anything like that. Childhood, meaning there's a good chance he'll grow out of it. And Epilepsy, meaning that our boy's brainwaves go a little off-kilter from time to time and a seizure results.
In other words, he will have another seizure.
The good news is that most kids with this type of epilepsy outgrow it, and this kind of seizure is usually limited to sleeping hours, primarily the first three hours of sleep, which means we don't have to feel constantly on guard that the next one could come at any minute.
(On that note, any recommendations of 10pm TV shows? I usually steer clear of those to try to go to bed early, but Robbie is usually asleep at 8pm, which means one of us will be staying up until at least 11pm to monitor him each night... which means more watching of 10pm shows, so hit me with your recommendations!)
We're still rolling with the butt valium as our only med, only to be administered if a seizure occurs. We're probably going to add a daily drug regimen once we nail down what's happening, but first we get a sedated MRI next week and an ambulatory EEG the following week. (That last one is the same sort of thing we did today, with 25 electrodes on his head to monitor brain activity, except all those electrodes will stay on for 48 hours of monitoring.)
So we wait. And we learn more. And we trust God.
This is our new normal.