Infantile Spasms

So, got a call back from the neurologist. Right now, we don't know anything. But they've classified the seizures as "infantile spasms". They've decided to put him on some steroids with the hopes of making the spasms go away. (now he's on 5 different medications, each with different restrictions on when they can be administered based on feeding times and such--my wife is amazing! I have no idea how she keeps up on all of that!)

Now, being the knowledge seeking parents that we are, we searched out all we could find out about "infantile spasms" . . . and didn't much like what we found. The Child Neurology Foundation put out a pretty detailed pamphlet on infantile spasms. They are characterized by an specific, but irregular brain wave pattern called hypsarrhythmia--which isn't present with epilepsy. Unfortunately, hypsarrhythmia is also strongly associated with cognitive impairment.

Another website, epilepsy.com, gave a less than positive outlook. It did say that the earlier the spasms are stopped, the better the outcome, but if they are a cause of a brain disorder (such as having nerve clusters in the frontal lobe and under-mylenation on the nerve cells??), then they have a higher likelihood of moderate to severe retardation.

Like I said, we don't know anything. We're just looking into possibilities and trying to learn as much as possible. One thing that has us worried is that taking steroids weakens your immune system. I know what you're thinking, perfect timing, right? Right smack dab in the middle of flu, whooping cough, rsv, pneumonia and every other nasty bug season. Please don't be offended if you don't see him much in the next little while, and please help us out by keeping your children away from him. Sorry, I know that's sad, but it's one more thing we don't want him to have to deal with.

Anyway, more doctor visits coming soon, and lots of prayers ongoing. 

Thanks to everyone for your concerns and prayers.