Fifth Time’s a Charm
James had his fifth EEG today. We were informed by the EEG tech that our boy “wins the award for the most EEGs in a short period of time” which isn’t exactly the first award we pictured him winning. However, we are starting to get the hang of them, from bedtimes to strategies to keeping…
The Spasms Strike Back
Unfortunately this isn’t the update we were hoping to make. James has had four more episodes of eye deviation that we had mentioned in the last post. This indicates that for whatever reason, his infantile spasms are trying to come back. Now the hunch is that James’ body is fighting against his current medication, which…
What a Week
This Monday, January 26, 2026, James had his fourth EEG. The doctors wanted to ensure that his new medication doses are working and that he’s not having any subclinical seizures (seizures you can’t see outwardly). Preparation for EEG days are never very easy; James needs to go to bed an hour late and wake up…
James' Journey with TSC 