Question about upcoming VEEG

[helenwayne]

I have 6 y/o boys who are both going in for extended VEEG's on Monday.

For a little background one of my twins had GTC seizure last spring. His first (short) EEG showed both generalized and focal discharges - with myoclonic jerks during sleep. He was placed on Keppra right away. The only seizure activity I am sure I have seen are myoclonic jerks sometimes at night (though since summer and him getting tons of sleep these have gone down a lot). His twin brother had similar 'jerks' at night and his EEG came back abnormal as well, with a finding of 'risk for generalized seizures.' They also both have 'night-terror-like' episodes that we aren't sure could actually be seizure activity.

Our neuro suspects they may be having absence that are too brief for me to see and ordered the VEEG to see what seizure activity they may be having that might not be being noticed (like the absence and what is going on at night). Of course I am board with this because I want to know. Right now we don't have a lot of answers and I am so grateful our neuro is helping us in trying to find some!

The nurse called us Friday to discuss the procedure and mentioned that it's scheduled for 4 nights, but if the doctor get's enough information we might be able to leave early. I didn't think of it at the time, but I am now wondering what she means by that?

Does anyone have any idea if she means:

That if there is enough seizure activity/pattern that points to a diagnosis on the EEG that might be enough info for the doctor?

Or do you think that they are wanting to match seizure activity on EEG with seeing seizures on the video? And we will be there until there is actual seizures?

Thanks for any insight or your personal experiences!!

 

[Kgartner]

The nurse called us Friday to discuss the procedure and mentioned that it's scheduled for 4 nights, but if the doctor get's enough information we might be able to leave early. I didn't think of it at the time, but I am now wondering what she means by that?

Does anyone have any idea if she means:

That if there is enough seizure activity/pattern that points to a diagnosis on the EEG that might be enough info for the doctor?

Or do you think that they are wanting to match seizure activity on EEG with seeing seizures on the video? And we will be there until there is actual seizures?

Thanks for any insight or your personal experiences!!

It would be best if you would speak directly with your doctor to get clarification. Every video EEG has distinct goals, and once the goals are met you can generally head home . Based on what you said I am guessing that they will want as much time on the video EEG as possible since they are suspecting that your boys are having additional subclinical seizures. But if that activity shows up right away you may not need to stay 4 days.

Are both your boys on medication for seizures? And are they reducing it for the study in order to be sure to see seizures, or do they want to see their EEGs on their current medication regimen?

Video EEGs are the gold standard for epilepsy diagnosis, and it sounds like your doctor is being very proactive in trying to understand what is going on with your boys! Good luck!

 

[helenwayne]

It would be best if you would speak directly with your doctor to get clarification. Every video EEG has distinct goals, and once the goals are met you can generally head home . Based on what you said I am guessing that they will want as much time on the video EEG as possible since they are suspecting that your boys are having additional subclinical seizures. But if that activity shows up right away you may not need to stay 4 days.

Are both your boys on medication for seizures? And are they reducing it for the study in order to be sure to see seizures, or do they want to see their EEGs on their current medication regimen?

Video EEGs are the gold standard for epilepsy diagnosis, and it sounds like your doctor is being very proactive in trying to understand what is going on with your boys! Good luck!

Thanks for your input! Makes sense. I will speak with our doctor tomorrow when we go in, so I am sure he will let me know what they are looking for. I was just left over the weekend wondering (plus my mom is going with me and she keeps asking: how long do you think we'll be there???)

Only one of my boys is on medication and we are weaning/stopping for the VEEG. I am very curious to see what happens when he's off the medication, especially since he was put on it right away. Do you happen to know if he stayed on his meds if the subclinical seizures would still show up, or do the meds stop those?

Thanks again!!