Tuesday, January 19, 2010

Abnormal EEG

It took a couple of weeks and many phone calls to get Sam's EEG report. The neurologist, as soon as she got it from the hospital, left me a voice mail message telling me to make an appointment as soon as possible. I think most people expected me to be upset by this. I really wasn't. Look at it this way - Sam is profoundly disabled. This test was either going to come back normal, leaving us exactly where we were before, or abnormal, giving us more to investigate and possibly an action plan. Sam is still very disabled but with the abnormal result and an action plan, at least there is the hope of at least a small amount of improvement.

A certain percentage of the typical population gets abnormal EEG results even if there are no true seizures occuring. A certain percentage of autistic people will also get abnormal results with no real seizure but for autistics, the chance is higher that seizures are occuring. The neurologist wanted to do a video EEG to get more information as to whether we are looking at a seizure disorder but since that involve sticking things to his head and making him stay in a bed for 48 hours, we detemrined that such a test is next to impossible.

The other option, the one we are persuing, is to give Sam a low dose of an anti-seizure med to see if he shows improvement. If he does we move forward. If he doesn't we re-think our plan.

So that is where we are.

If this medication helps Sam I will be incredibly happy. I will also be frustrated. You see, I mentioned concerns about seizures to a number of doctors because Sam had these spasms as a baby that made him rake his face during his sleep and he showed some strange eye movements. It seems like once you have an Autism diagnosis, doctors stop looking for other issues. Only the neurologist felt an EEG was an important step. I first asked about an EEG over 2 years ago when we met with a developmental pediatrician.

Keep your fingers crossed for Sam!

2 comments:

Rossa Forbes said...

This is good news, because now there is a new avenue to explore that might lead to symptom alleviation. Yes, it is unacceptable that parents' observations are discounted by the doctors. As you say, once you get a diagnosis, case closed.

KAL said...

I am keeping my fingers crossed for Sam, hoping that the low-seizure medication helps him - but I know this must be hard too. How frustrating to have tried to pursue this avenue for so long. I agree, once they hear 'autism', a lot of doctors stop looking for anything else. Hang in there, you've been doing a great job getting him what he needs.