Hopkins on Monday

Ok looks like the ketogenic diet is the route we are taking for Cailyn's seizure control. She's had very little seizure control all week. We've been upping the medicine but the doctor doesn't think its going to kick in all of a sudden and we are entering the point where there could be toxicity from the levels she's on.

So she's being admitted to the hospital Monday through Thursday, we'll meet with the doctors and dieticians and learn all about the diet and she'll be on it for at least 6 months. Starting now will be easier than starting later because she'll just be on prescription formula for 1-2 months and then we'll be able to add in babyfood. She's been eating a little food now but really seems like she can take it or leave it. So she'll be on the special formula for 6 months and then depending on EEG results they'll determine if she can come off. I believe the thinking is this will help the Infantile Spasms and may help some with the Epilepsy but she will probably have to be on some lower dose of medicine afterwards as well.

We're working out the details as to which one of us will spend the night with her on which nights. This ends my internal struggle (and extreme guilt) with trying to decide whether to discontinue nursing or not. She can only have that prescription formula.

This all came about really quickly. Her doctor called me at 1 p.m. and explained that they only admit new patients for the diet once a month and that this coming Monday is the admittance for September. So she'd have to struggle with the seizures and really not be Cailyn for that much longer. There have been no smiles, no recognizing Mommy and Daddy... she's just trapped inside.