Measuring success? seizure control, what is it?
 

I just got a copy of Rileys last neuro visit note, I was a little shocked and disappointed too.

Dr. Parrott stated "Vagal Nerve Stimulator has not been of benefit to date"

I am really not sure that I would say there has been no benefit, as dissapointed as I am about it I do think she has had some positive stuff, she is not as post-icitial anymore. We have been able to avoid using diastat a time or two. I thought that was some success.

Someone in another group asked a similar question a few days ago and now I am asking myself. How do we measure success v/s failure?

I don't know that I have any answers for you. I was thinking about the VNS comment. I can't remember which mom wrote on the old forum (and I can see her son's face) saying that it would never be turned back on, but she was glad they tried it. You are seeing some good from the VNS, just not as good as you hoped. I don't hear anything in your words about even considering turning it off.

Success versus failure is always a relative thing. For someone having several seizures per day dropping to one per day, that's a success. For someone having one every two weeks, increasing to one per day is a failure. Even that isn't black and white. Having several myoclonics per day and dropping to one tonic-clonic per day is a tough call. One tonic-clonic every two weeks increasing to daily myoclonics, well... you get the picture.

I'm not sure how well you've documented the before and after changes to decide be able to judge the success versus failure of the VNS. I keep thinking you said writing her name has gotten worse? Regression is rarely a good sign.:( On the other hand, if you hadn't tried the VNS, would things be worse? (Didn't you say you had a crystal ball hidden somewhere? It might be helpful.;))

There's always the old paper chart method, with pros in one column and cons in the other. You can list out anything you think of: frequency, severity ("strength" of the seizure), length of time, post-ictal, daily behavior (happy or angry or ???), side effects, and ???

(((Hugs))) Sorry you feel the need to ask the questions. Hope someone else comes along with better insight.

also, give it 2 yrs...in some people, it takes upwards of 18 months, and longer to see any real results.

Denae,
I just wanted to say that the paragraph in your journal where you say you went to a group meeting where the parents were saying how they were told their child would not be able to this or that and that they turned out to do so much more, yet, you were told that Riley would be able to do so much and she clearly can't---well, that is my experience with Sarah. When she was young, all i heard was she is fine, she does not look "syndromy", she will come along, etc. Sarah fooled them all. She is entirely dependent for all things-eating, toileting, walking, speaking-you get the idea. The complete opposite of most people's experiences I have found. Just wanted to share.

Thanks, Mumtosarahlou ... I don't think I have ever found another mom who has heard the bright side with rosey promises of how great things will be only to see the total opposite...

It just does not make any sense.

thanks for sharing.

KTM is very correct. Several people I know have had to wait up to 2 years before they felt an type of results....We are just starting out so I know it can be a long road.

You also, must remember that success is measured depending on your neuro or epi. Many of them have an idea that 100% seizure is the only goal to have...well you know come on let's be very realistic here....How many people (kids) with other issues like brain damage ever get 100% seizure free...NOT TOO DANG MANY!!! So with that said...Only you can measure the success of any type of treatment.