West Syndrome, Infantile Spasms, Epileptic Spasms....WTF?

Sigh. Alright last night I typed up a post and kept it in draft mode. I wasn't sure I could explain things well enough, and without the emotions or negativity I was feeling. So this morning I deleted it and will give bullets of what we learned/did without the emotions/negativity.

• West Syndrome, Infantile Spasms and Epileptic Spasms are all the same thing. All do the same amount of harm. All suck. This is how it was broken down for me. WS typically has these characteristics: spasms that come in clusters, hyppsarrthmia, regression. Infantile Spasms DO NOT have to have all three, but can have a mixture of them. For instance you can still have IS without having hyppsarrthmia. You can have Infantile Spasms on the EEG but not see them outwardly. Epileptic Spasms are the same thing as Infantile Spasms but because when the person is over a certain age, they now call it Epileptic Spasms. All suck. All have the same potential of robbing your child of what skills he has.
• A VMR is basically two separate things run at the same time- the EEG, and the video. The EEG is run through a detection program on a computer. If certain criteria is seen, it is then flagged for the doctor of the EEG department. Dr. A. This doctor is not our neurologist, he just reads the reports and writes them up. Dr. A is who showed me the video of what he classified as Epileptic Spasms (IS/WS). Based off what he showed me I came home to research.
• There are types of seizures that can be induced by certain things, ie: flashing lights.
• As I stated in a prior post, the movement Dr. A showed me and called ES were something that Daniel has ALWAYS done. So to prove that I knew what I was talking about and to prove to Dr. A and Dr. C that the report was wrong, we induced this "spasm" and video taped it to show them yesterday. I had all the past reports and did my comparisons/said my whole spiel, showed my video, fought my fight. He listened to everything and let me say what I wanted, and when he first watched the video that we made, he said "sure looks like a spasms". I explained that watch longer, listen to the sound, you can hear me tell you that we are bringing balloons into the room, when Daniel will see them he will do this movement repeatedly, and yes they look like spasms, but we are controlling it, we start it and the minute we remove the balloons Daniel is fine, no more movements. He agreed...if we could make it happen and control it like that it was NOT a seizure. Looks like it, but is not. What we learned, don't judge a book by its cover. So I had a moment of glory. I proved Dr. A wrong.
• Dr C. listened to me, listened to my explanation then proceeded to say in the nicest way possible; "regardless of what the video says, the EEG doesn't lie. We are not seeing correlation with the times you pressed the button so no, those aren't seizures, but he is indeed having epileptic spasms in clusters but they are just not manifesting in an outward fashion for us to see. As much as I think he wanted to tell me they weren't seizures, he did it in the nicest way possible. And he listened to me. He answered all my questions, explained our options, and gave me the time. I might not have liked what he said, but he took the time to explain in a way that I could understand, wrap my arms around. So I don't like what he has to say, but I trust him in the fact that he knows what he is doing and he is looking out for my child. He cares.

So after a long doctor visit, we are still continuing with the 500mg two times a day of the Vigabatrin, we are scheduled for another 24 hour VMR within a week or so, if there is still seizure activity we will do the next course of treatment. That being ACTH, which we did last time to get the seizures under control and stop possible regression.

Feel like I've been kicked in the stomach? Yes repeatedly. Does it suck? Most definitely.
Am I terrified? You bet.

I say I don't want people to look at my son differently because of his diagnosis. I want people to judge Daniel for who he is, not what papers say about him. But I look at him differently too, I look at him with some much love, such an aching heart, scared. I look at his eyes and I see there is life in them, and I see that he knows I love him, that I believe in him. I don't want him to see the fear in my eyes when he does odd movements, when he breathes a little different. But I can't help feeling the fear. I don't want to lose Daniel. Not mentally, not physically, I want him not to lose his abilities that he has fought for. And it terrifies me that I have no control over this. NONE. All I can do it love him, but sometimes that doesn't feel like its enough to protect him. I am suppose to protect him and how can I protect him from something I can't see?

So even though I won a small victory we still have a big one to fight. And it sucks. There are different paths we can take, all of them are scary and leading us down roads I don't want to be on. I want to yell to whoever will listen "HEY, we're lost, we took a wrong turn and shouldn't be in this place, we don't belong, this is not the journey we signed up for!"

Hello, is anyone listening? He does not want or deserve to have this bumpy crappy ass-ed pothole filled road to travel.

OK so I lied, I didn't post without the emotions or the negativity. So shoot me! I tried!
and since I already screwed up the post with emotions for the second time, I might as well top it off:

So to the person who said to me:
"Modern medical literature informs us that there is no evidence of additional brain damage that even severe seizures would bring."

Talk to the specialist that people travel from all around the world to see, I'll send you his phone number and email address. Or better yet, talk to the parents of the children who have IS and who have regressed? Is that not damage enough?

To the person who said to me:
I fully understand your concerns about Daniel's seizures, however lets look at the situation logically, you have to overcome the irrational fear of seizures and understand what they are about."

Yeah, well SUCK IT!