I can’t say it came as a surprise, it’s something we’ve been wondering about for a long time. We even have the prescription for the medication all ready to go, but we were holding off, waiting for confirmation. It came. Today. Jacob has been having seizures.
They aren’t the typical thrashing-around-just-like-in-the-movies kind of seizure. Nothing with Jacob is ‘typical’. They mostly happen at night, as he’s falling asleep and while he is asleep. It looks like he just heard a loud noise and was startled. It’s over within seconds but it happens every night, and several times a night when he is sick. We finally caught a few ‘good ones’ on video (thanks to the video camera mounted over his bed so we can watch him while we are in another room during the few hours we are nurse-less between shifts) and forwarded the clip to his neurologist.
So now we have another medication to introduce into his small body. He is on so many different meds: 2 for reflux, 1 for muscle spasms and 1 for his lungs. And now one for seizures.
The one bright note in this is that his new medication has sometimes shown a positive side-effect in PMD kids – it may slow down PLP production, which in English, means that there is a chance it will lessen the severity of the PMD symptoms. So for now, we’re keeping our fingers crossed and hoping for the best: no more ‘startles’ (it’s still too hard to call them seizures) and fewer symptoms.