Our Shortest Hospital Stay Ever

At 9:00 this morning we checked in to the hospital for what was supposed to be a 48-72 hour video EEG in hopes of finally naming the the type of seizures M has been having. Her seizures have become more frequent and more severe in the past several weeks despite new medications and increased doses. She got "wired" by 10:30 and at 12:15 they came in to disconnect her as they had "plenty of information." When there are enough events to provide "plenty of information" in less than 2 hours, it certainly can't be good news. We were discharged and sent back to the clinic where the dreaded Sabril starter packet was waiting on the table in the exam room.

What our hope was, was that M has been having myoclonic jerks. What she is indeed having are literally hundreds of Infantile Spasms per day. Basically, there are two options - don't treat and wait for them to resolve knowing that with each one, she is suffering additional damage to her already severely compromised brain function; or treat them with Sabril which carries great risks of its own. We opted to treat them. Approximately 1 out of 8 of the children our Neurologist has treated has not responded. Hopefully M is one of the lucky 7.

There is A LOT involved with starting this medication, a lot of waivers to sign, monitoring to be done. IF it works, we can expect to see results in as little as a week. Dr. D says that when it works really well, these kiddos just suddenly "wake up" and "come alive." We're praying for that outcome.

The very unfortunate side of this is what lies ahead. Because of the extent of M's brain injury combined with complications of prematurity and underlying seizures, she is at extremely high risk of developing Lennox-Gastaut Syndrome down the road. We can't think about that just yet, but it's hard to ignore once the knowledge is there.