Our Journey with Infantile Spasm: Part 4
We gave Josiah his ACTH shot every morning. Kevin was great at administering the shot, and Josiah handled it like a trooper (as long as he had a bottle). We even got some fun Band-Aids to make the task a little less dreary.
The first week after Josiah started ACTH things seemed to be looking up. His seizures stopped completely within a couple of days and he seemed to have some of his old spunk back. He even shared some giggles with Nana.
On Wednesday we took him to Dr. G for a follow-up EEG. The doctor was concerned because Josiah's brain activity had not normalized as it is supposed to within a few days of starting ACTH. Dr. G was still seeing some hypsarrhythmia—or disorganized, chaotic electrical activity in his brain. The hypsarrhythmia could be evidence that the ACTH was not working, which would lower Josiah's chances of full developmental recovery.
We left the appointment very discouraged. The worst part was not knowing what would happen. Would the seizures stay away? Would Josiah recover developmentally or would he grow up with moderate to severe special needs? The doctor couldn't offer us any answers. "We'll just have to wait and see," he said.