Good News

I spoke with Dr. Pearl, Cailyn's neurologist at Children's, a little bit ago and he said he was pleased with her EEG. She did have some spikes in her brainwaves, but she was not far from normal. They did not see the hypsarhythmia which is the chaotic brainwaves they would see if she had the Infantile Spasms. They would see this whether she was having a seizure at that exact moment or not if she currently had the Infantile Spasms.

So we are to stay on the medicines she's on now, the Topamax and the Phenobarbitol, see him again within a months' time, call if she has clusters to schedule another EEG and only go to the ER for a Grand Mal seizure. He's looking at her bloodwork to make sure we've done all the tests they have. There are some tests for genetic or metabolic disorders that would explain the seizures but knowing those things wouldn't change treatment.

The ACTH, which is the injections he talked about, are specifically for Infantile Spasms and they are more powerful, sound like the last resort, so not necessary at this time.

When she's 6 or 7 months he'll want to try to wein her off the phenobarbitol but for now keep her where she is. I'm following up with him in an email to ask if other forms of epilepsy can cause clusters, the back to back seizures she had Tuesday last week, is it still possible she'll outgrow the kind of seizures she's having and whether or not she can start her vaccines. She was two months old on Tuesday and she's supposed to start those. I was going to try to get in to her pediatrician today but I'm going to wait until Monday. She's been through enough this week to be tortured with all those injections.

She woke up this morning a happy baby again. That sad grumpy baby is still gone... Thank God.