Sitting down at your computer and opening up an email that the subject line says
Re: Daniel S.
Do you feel dread too?! I did!
Opening it and reading this:
Good news! Everything looks good. EEG - no epileptic activity. Background waves a little slow - that's because of the syndrome - doesn't worry us at all. And both VEP and ERG are normal!
Let me know if you need anything else.
As my daughter would say "Hells yeah!" Me I just sat there and re read it about 5 times, cried and then got up and did the happy dance! It you're not sure what the happy dance is, click here!
Yesterday we went to the hospital got all these tests done and Daniel did not like them one bit. I actually broke down and cried in front of everyone during the second test because he was so upset and they had to give him medication to relax him. Hell I'd be upset too if I was strapped to a stretcher and my arms taped down not being able to move for over an hour. Plus he was overheating from being wrapped up and taped down and screaming. Just got to me this time, just how shitty it is that he has to go through this crap. I know there are other children out there that have to go through far worse then we do. And my heart aches for you, it really truly does.
This was Daniel's 3rd clean EEG since he was on ACTH. This means we can now start to wean Daniel off his seizure medication and the only meds he will be on is for drooling and constipation. Which if I can start to get him to eat things like prunes and such, we will be off that too.
So, 6 weeks from now...Daniel will be off Vigabatrin (hopefully for good!) NO MORE INFANTILE SPASMS. Now please realize that I know we are not completely out of the woods because with his brain malformation (CBPS) seizures will ALWAYS be a great possibility. I know this. But for right now......they are frickin' gone!!
This also means that we can start back up on the TES therapy, the TENS therapy, and the VitalStim therapy! I will hopefully in a few months have a little body who has a stronger trunk, who can swallow better than before, and who will be more alert and aware because he is mostly drug free.
On another note: Daniel started doing swim therapy and he isn't screaming like he was a month ago when we first tried and had to stop because it wasn't productive!! I'll post pictures later of that one. I have to get his therapists permission ;)