Evie still at PCH

Today was kind of a long - but slow - day, with all of the action at PCH.

We got up early (5:30am), mainly because... it was less painful to be awake than asleep. ;-) The main activities for the day were, basically, to consult with Dr. Bernes (Evie's neurologist), get an EEG, and get these blasted seizures figured out! Daniel ended up taking most of the day off.

In brief - for any that are unaware, seizures are a very expected symptom of Aicardi Syndrome - perhaps the signature outward symptom. Typically, the seizures initially present around 2-3 months (which... Evie is), when most kids are diagnosed, as all of a sudden, they start seizing noticeably. It's really more an issue of controlling the seizures, on an ongoing basis, rather than preventing them absolutely.

Anyhow, late the previous night, Evie was administered a dose of fosphenytoin, to try and take the edge off the seizures "now" (the "faster-acting anti-convulsant referenced earlier). This seemed to work until.... maybe 8 or 9am, until (naturally) right after Dr. Bernes paid Evelyn a visit.

Shortly after Dr. Bernes departed, Evie began continuing her seizures. They weren't drastically different from the previous night, at this point; typically around 6 distinct ~20 second episodes in the 20-30 minutes following waking up. Anyhow, we essentially waited & Evie slept most of the morning until the EEG around noon. Naturally, most of her seizures occurred while not hooked up to the EEG, but they did manage to capture one.

Kim left for the house about 1:30pm to go grab a shower and a change or two of clothes (Daniel stayed); returning later in the afternoon. Dr. Bernes came by around 2:00pm or so to discuss "where to go from here". In short, he wasn't comfortable to let her go home without getting her seizures under a little more control (and frankly, neither were/are we). It's Daniel's own suspicion that Dr. Bernes was a bit surprised the fosphenytoin didn't completely knock the seizures down.

Anyhow, we went ahead & re-started Topamax, this time at 10mg twice a day (instead of 15mg once a day) - the theory, I think, being to build it up in her system faster, through a slightly higher, but mostly more constant, flow. Most of these seizure medications "build up" in your system, so it takes some time to ramp up (and down) when changing medications. Topamax has had reasonably good success, as reported by a few Aicardi parents, so we're hopeful once it gets built up, we'll see good results.

Evie continued to have worsening episodes of seizures into the afternoon & evening, transitioning to a few more pronounced & somewhat longer seizures (the longest around 45-60 seconds), interspersed by more occasional but drawn out "semi-seizures", or "waves" as we've taken to calling them. It's as if you can see her fighting with herself, starting to seize, but then not, so on and so forth. Really not the easiest thing to watch, but we're just hopeful that in the end it confirms what we've thought all along; that she's stubborn & a fighter. ;-) The past two wake-up cycles - when she seems to experience the most, lately - we've counted about 8-10 distinct seizures over the hour after she wakes up, some of those with the "waves" in between.

At this point, Evie is continuing on phenobarbital and Topamax "regularly" (twice daily ongoing), and will have at least one more fosphenytoin dose overnight.

At any rate, both because "official" policy at the hospital is only one parent staying overnight, and because Daniel needs to get to work, we decided to send Daniel home tonight, to take care of poor Rocky & Rufus, with Kim staying at PCH with Evie. He'll swing by the hospital tomorrow morning on his way in to work. If Evie continues in the hospital tomorrow night (which is at least 50-50 odds), we'll probably switch.

So, that leads us to the present: Daniel drafting this post at the kitchen table when he should be sleeping, and Kim sleeping fitfully on a hospital chair-sleeper next to Evie's crib at PCH. Hopefully good - or at least better - news tomorrow! :-)