At 3 am Cailyn woke us up screaming and crying and she was having more seizures. These went on every 2 to 3 minutes for an hour and a half. It seems like we just have to wait it out, feed her and she'll fall asleep. She had more seizures during the day today but nothing like last night.
We had our 2nd opinion appointment today with Johns Hopkins and that's confusing too. The doctor said yes she did have a seizure the first time she was in the hospital but probably not the last times. At this point the only way to make sure what she's having is seizures is to take her off the meds while she's on an EEG. That would mean she'd be in Johns Hopkins for about a week.
Tomorrow we have to get in touch with the first doctor and then decide which one we are going to continue with. I also need to get back in touch with the gastro folks in case this isn't seizures. Its just about too much to handle at this point.
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