The first video of a seizure I recorded was at 4 days old and hospitalizations started at 6 days old. All he knows is being “high” his entire life — starting with phenobarbital, so much at 3 months old (10 ml of pheno) that he slept 21 hours a day.
Ezra was developing normally until 3 months until this high dose of pheno and topamax, then the seizures were so severe (generalized tonic clonics with apnea….he’d stop breathing…and was put in a medicated coma for a week because he’d stopped breathing 3 times before arriving at the hospital, and was bagged with each violent seizure). At that point, the next med he was put on triggered Infantile Spasms and he completely regressed to that of a newborn and has been that way ever since.
He started medical marijuana in the form of a lower ratio oil (a 1:1 THC: CBD oil) about 2 weeks ago. Due to the level of THC, he’s on a low dose of CBD. However, in those 2 weeks, he is holding my gaze and actually looking at me for periods of time instead of just glancing in my direction (he also has Cortical Visual Impairment due to the seizures and bilateral amblyopia, which makes him legally blind). He’s also turning his head and moving his arms and legs more than I’ve seen consistently since he was 3 months old. He’s trying to hold his head up, and tonic and myoclonic seizures have been cut in half! This gives me great hope for the progress I’ll see when he starts Charlotte’s Web (a strain high in CBD and low in THC) and can actually have a much higher dose of CBD.
We moved to Colorado from SC seeking treatment for Ezra. It’s a 24 hr drive from home and we miss our family terribly, especially the great grandparents that won’t be around much longer.