A Good Day – Smiles! and Weaning off Phenobarbital

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Today is a good day. Lydia was full of smiles and her neurologist sent us a schedule to wean off the phenobarbital. Lydia hasn’t smiled much since being on the ketogenic diet. Her alertness has improved but the sacrifice was her smile. Today it was back. She responded to tickling on her chest and her mini-zebra-pig squeaky toy. Check out this girl’s grin!

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And, nearly as exciting, the neurologist got back to me with a schedule for weaning off the phenobarbital. It could have been any one of the drugs she’s on for seizures because, well, none of them have had any effect except possibly side ones. I mean side effects- “drowsiness, dizziness, problems with memory or concentration; excitement, irritability, aggression, or confusion; loss of balance or coordination; nausea, constipation; headache; or ‘hangover’ effect.” (source here). But I’m not sure if she’s experienced any of these side effects. How would I know if she had a ‘hangover’ or was feeling confused? But anyway now we won’t have to worry about that, at least with the phenobarbital.

And who knows, maybe the pheno-fog will lift and we’ll see some more smiles.

That is what I’m going to call a good and successful day.

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