We just got back from our appointment with the neurologist. Froggy LOVED her. She kept walking up to her and saying, "doctor, doctor, doctor." The doc was charmed of course.
So here's what we know. The doc said she's pretty sure they're seizures. And we don't think it's related to Cystic Fibrosis. Sometimes a severe pulmonary problem (ya know, like a lung transplant, or major lack of oxygen to the brain) can cause seizures, but that's not Froggy. Nope, we're just sooooo lucky, that little Froggy has CF and epilepsy! Woo hoo. You'll have to excuse my sarcasm. Froggydadda and I are going on no sleep and super stress, so it's a wonder I'm making any sense at all.
The doc wants to schedule an EEG and an MRI as soon as possible. But getting a prior authorization through our lovely insurance company could take a week or two. Hopefully we'll get the EEG next week. She'll have to be sedated for the EEG, but the MRI requires a general antisthetic - which really scares me. She's so little. But we need to find out what is actually causing the seizures, (epilepsy is just a generic term for anyone who has had over 3 seizures). Because the seizures are affecting her right side (eyes and arms), it could be something with the temporal lobe. The doc said they also need the MRI to rule out developmental cortical dsyplasia (which involves the outer rim of the brain,) where sometimes there is abnormal growth. I guess this accounts for about 20% of epileptic seizures.
The good news is that the seizures are very short and are not causing damage to her little brain. The doc said that 50% of the time, kids outgrow seizures. And the meds for controlling them are excellent.
The big thing obviously is ruling out growths/tumors or a malformation of her cortical development. The doc doesn't see any signs of behavior or congnitive development, so that's a good sign.
Now, we wait, we call and make appointments, we deal with our evil insurance company. The next couple weeks won't be fun, but hopefully we'll get some answers. In the mean time, this sassy girl will continue showing us how she is absolutely worth every moment. Please keep Froggy in your thoughts and prayers.