The last few weeks have been pretty crazy for our schedules and I think it will continue to be hectic until the end of July when we'll be able to finally catch our breath again. I've been asked a lot of questions about additional testing, and this is pretty much the breakdown of what we're looking at having done:
This will give baselines for where Evan is developmentally to include fine motor, gross motor, language skills, social skills, etc. It is important to have this baseline for the doctors to refer to when determining if the seizures are creating any kind of deficit. Evan is ahead of age on everything except gross motor and they want to make sure he continues to progress accordingly.
Week-long Video EEG
We are not looking forward to this one. Evan will be hooked up do an EEG in the hospital and video taped the whole time. The goal is to see where the seizures are originating and how many areas are involved once a seizure starts. This will also reveal if he's having more seizures than what we're aware of.
This is pretty basic, non-invasive and involves no painful procedures so I would like to think it'll be pretty easy. Unfortunately, Evan freaks out as soon as he sees an exam table, so I'm dreading even this simple test. Because the kidneys are often affected in Tuberous Sclerosis patients, this would be a test that could confirm a diagnosis of TS. If there are any issues with his kidneys, that is something that would have to be closely monitored.
Eye Exam for TS
Again, another simple test that would be dreadful for us. This one we'll probably hold off on for as long as we can though. The benefit is that it could give a TS diagnosis because the eyes are often affected, but if the eyes are involved, it usually doesn't cause any vision problems, so we're having a hard time giving the green light on having a test done that will freak Evan out and not change anything in terms of his medical treatment.