This past month has been ROUGH with Bennett. PartiLly I’m sure because Olivia is here and he’s realizing for the first time that my attention is split and she’s not going away. But partially we think it’s also teething, not feeling great, medication adjustments (?), and who knows what else.
We got so desperate we actually put him back on the Zonegran for about a week, but didn’t notice a change really so we took him off of it again. His appetite has gone down this month (back to mostly just eating pouches and yogurt, not doing great on solid table food), his sleep has been alright, but he’s just sleeping less overall, hisbwalking hasn’t changed, and he’s picked up a few signs, but gets them confused a lot.
We decided to put him back on the CBD a few weeks ago and started to see more progress for a bit in his language and movement, and I still think we’re seeinf the benefits (won’t be going off again anytime soon), but it sort of plateaued.
There was a stretch of days last week where Bennett literally screamed (and I mean scream) for about 4-6 hours per day. It was very...trying. Apparently these kids sometimes just feel pain at a ridiculously intense level—to the point where some doctors hve given the parents morphing to get their kids through those bad days. Even though they don’t know what causes the screaming necessarily.
One day it just sort of stopped so we have no idea what happened. My guess is it was probably mostly teething or something, but things have been more stable since then. Still not awesome though. He’s just overall pretty fussy. Luckily seizure control has stayed good on just 2 mL of Trileptal 2x/day!
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