You must have seen the video.
I had 2 reasons for putting it on the internet.
#1 His Dr wanted to see the video as soon as we captured a "big one." So it was an easy way for him to see it.
#2 Because there are parents out there looking for answers for their own kids just like me. There are many many many seizure videos.. tourettes.. conversion disorder.. etc. It is a way for parents to watch and see similar things and read about the diagnosis. It is helpful though it is HORRIFIC to watch.
I am glad it is out there for people to see.. when we ask for prayer.. we are serious. Did it not make you pray harder than if I just said he has epilepsy and needs prayer?
Toby has Conversion Disorder that manifests itself as Epilepsy. He also has an irregular EEG indicating REAL Epilepsy as well. He is a very peculiar case. His Dr has never seen anything like it. We really like this Dr. He is very informative.
Toby is in counseling with Dr Ron. And he sees a pediatric neurologist. We are still searching for the right medication. After you try 3 meds.. they consider you untreatable with medication and suggest surgery. Right now, we are on our 4th and final med. He hasn't had any change so far but this med is very slow. It could take up to a full year before it works!
He does need prayer. Each thing we try changes his outward manifestation. It is hard to nail down what is real because of the Conversion Disorder.
For example: We went to a new pediatrician a few days ago. I was explaining to the Dr his issue and Toby has 4 small seizures. When we moved on to another subject he stopped. He got sent to the lab for blood work. I had to tell the lab tech that he has absence seizures and might flinch so she will have to hold his arm extra tight. He had one right after I said it. It is hard to separate the real from the fake. It is very real to him. It is hard to know what and how to treat it. You might instantly think just from my examples that he is faking. It could very well have been real because of the anxiety of the situation. He could have had 10 and we only saw 1. It is a confusing frustrating mess.
When he was hospitalized for a prolonged EEG for a couple of days... we wrote down when we saw them and what time it was and for how long and what he did... we recorded 14 seizures. The EEG showed 28. So something is definitely happening in his brain even when we don't necessarily see it. Yet, there are times when we know it isn't real. Dr Ron can talk him down from them. He has several times. No one else can. *shrugs*
There are things he can't do because of it. Ride a bike, swim in dark water, driving could be a problem eventually... *sigh*
So yes... we need ALL the prayer we can get. Us, Toby, and Dr Ron.. and his Neurologist.
We have thought about all possibilities.. from diabetes to demon possession. We are open to idea, suggestions, information, etc... But mostly just prayer. That's the only thing that CHANGES things. We can stone him out of his mind with meds and they will slow down but he turns from a little boy to a tired zombie. THAT is NOT okay.
Pray pray pray.