Infantile Spasms . . . Now I’m Mad

Infantile Spasms is “one of the catastrophic childhood epilepsies.” It is very difficult to control and is associated with severe mental impairment. Since her diagnosis of infantile spasms I’ve been googling as I threatened to do and have joined a forum and a facebook group…the modern way of doing research. Prognosis is poor – early death, severe mental impairment are likely unless the spasms can be controlled. Let’s not be light-footed about this. But there are some incredible stories of kids who have gotten through the infantile spasms and gone on to thrive. So miracles can happen. My hope for Lydia is the size of a battered, dried up potato skin but it’s still there. Barely. Our biggest and most infuriating chance is that of all the medications we haven’t tried. Apparently the usual front-line medications include ACTH and Vigabatrin. Why have we not tried these for her? Well I think it might be the way we’ve sidled up to an Infantile Spasms diagnosis, when we were already hospitalized to get on the ketogenic diet. It was, apparently, sometime then that they decided it was IS. We, her parents, didn’t know until last Friday, however that is a big blazing anger ball I don’t want to get into right now. So, again, why have we not tried the usual medications? The only ones that have any proven effect on IS? Well…I suspect it is partially because the doctors have already given up on her. That sounds dramatic. But really, I do get that feeling and when they say things like – “it isn’t what you were expecting but some kids have hundreds of seizures an hour, let alone a day” I just feel like we are spinning away, in the dark cut loose from the ship and sent to perish in cold, dark, space. No up or down. Just spinning loose. Anyway, I sent my email to a handful of doctors – “how soon can we get on these meds?” – and the best I’ve got is an appointment, ONE MONTH AWAY, in the clinic in the next town over because the nearer one was booked three months out. It would all be funny if my heart weren’t a smear on the road by this point. This is the best they can do? Or the best they will do? So we add one more month until we can even meet to make a plan with the doc. That is 24 more days which, at 100 seizures a day is 2,400 more seizures, just to make a plan. Crushing.