When people hear that my baby girl has a seizure disorder called Infantile Spasms, often one of the first things that they ask me is whether she will grow out of it. My answer is never an unqualified yes or no, as I'm sure they are expecting. It's more complicated than that, or at least I am. I haven't quite decided which. . .
I've come to the conclusion, though, that the name is to blame for this conundrum. "Infantile" suggests something that will be grown out of once the child leaves, well, infancy. (and it also makes it sound rather benign and piddly when in actuality it is absolutely devastating to development, but I digress.) Which is technically true, but not in the way most mean it. Yes, the brain grows out of this type of spasm because it only responds to the underlying etiology (cause) in this certain way when it is immature. Unless the spasms are halted by intervention (medication or surgery), the brain only "grows out" of them usually to morph into another form of difficult and varying seizures that are not typically very responsive to treatment. Read: scary bad prospects out there.
Anyway, what I think people who ask if Ellie will grow out of infantile spasms are getting at is "how will she turn out?" Sorry if I'm projecting, but that's at least what I'm thinking exactly 100% of the time.
So my answer typically goes a little something like this (usually without quite so much medical-ease but I can hardly help myself): "Welllll, her best chance to develop normally is to stay spasm-free (nine months and two days so far, but who's counting), which she achieved after a six-week course of high-dose hormone injections last summer. She is developmentally delayed currently, but she is making wonderful strides at catching up to her peers. (and I always finish with this) I have great hope for her."
Not that it's not just a thought away at all times anyway, but actually getting to talk about the potential outcomes often makes me go home and google "infantile spasms prognosis", searching for anything I might have missed the first time around, as if in the magic of the information age some new tidbit published yesterday will finally shed light on just exactly what we're in for later in her life.
What I really want to google, if I'm being honest with you, is: Will my daughter walk? If so, when? Will she need leg braces (my newest fixation since the physical therapist at Ella's new school asked about the possibility last week)? Will she speak? Will she have obvious deficits? Will she be socially competent? Will she be normal?
I know it doesn't work that way, and really I'm not sure what I would do with that information if I had it anyway, but it doesn't stop me from wondering.
