Being in SHOCK is an understatement.
Being in denial? Perhaps.
Grasping at straws? You bet.
Researching again? Hours upon hours!
Trying to come out of the fog I've been in since I heard the nurse practitioner say Infantile Spasms.
I just lay in bed at night and something doesn't feel right this time. The other two times Daniel had the seizures, I was like ok, I see them I understand. Not so much this time. There are too many things that just don't fit this time around. Now mind you, some of you will probably read this and say to yourself, "that poor girl, she just needs to come to the reality that Daniel is having seizures, and let it go, move on." And to that I say you might be right, but until I can get this nagging feeling to go away, I can't put it to bed yet.
This is what is odd (in my book)
- no new outward appearance of clusters/seizures
- the movement that we did push the video button on in the EEG we have pushed on 4 different EEG's previously and we were told they WERE NOT seizures.
- there is no hyppsarrythmia
- there seems to be no regression, only slow progress which is typical for Daniel
- there are two parts to the VMR. The actual EEG and then the video recording. We found out that only the EEG is looked at through a computer program then a doctor reviews if anything is found through that detection. They only review the video if the parents push the button when they see a funny movement. That being said, it is my understanding that from the review of the EEG, there were spikes but they did NOT see seizures. Only upon review of the video (where we hit the button) did the doctor who read the report call it IS. because of the 'movement' only. Not completely based off the EEG. (see report under Interictal Findings).
- Also note under Clinical Findings (meaning the video) the report reads: These spasms showed minimal EEG correlation or sometimes the EEG correlation was obscured by EMG activity. Some spasms showed diffuse spike wave activity followed by attenuation. We would not localize the seizure onset..
I know grasping at straws, and its all confusing for people to read. I an not saying Daniel isn't having seizrues of some kind, or he has a high potential. We have always know this because of his brain malformation he will never have an absolutely perfect EEG, its impossible. He has spikes, which means there is potential for seizure activity. There are no hypps. When he was having the "seizure" (odd movement) it didn't cooralate with the EEG. I can induce it. Seizures?? Maybe, but I need more to think that it is infantile spasms again.
But who am I? I am not a doctor and I am new to this (3 yrs only) seizure stuff. I have researched a ton, but again I am not a doctor and I don't pretend to be one. But it is a gut feeling that i have, and I am around him pretty much all the time. I am his mom, and yeah probably grasping at straws.
But wouldn't you too?
We have an appointment on Tuesday with the neuro. Then I will point out all my thoughts and he'll probably think I'm nuts....