Well, good news...we're weaning off the phenobarb! Even though Charlie is still having some seizure activity, we need to get her off the phenobarb because it can cause delays if used long-term....like she needs anything setting her back! So we got a weaning schedule for the phenobarb and also an advancement schedule for her topamax in case she starts having regular seizures.
I talked to him about Charlie's desatting episodes (another scary story about that coming soon!) and he said it would be hard to say without an EEG and since she's not having them frequently enough, we probably wouldn't catch one. He said when she has them more regularly to call and we'll schedule one asap.
We have pulm this week and the sleep clinic next week. Hopefully we'll egt some answers about why she's desatting.