Pediatrician/neurology update

Addysons weight is 55.8. Gi isn’t thrilled about her weight. Pediatrician said he gets it but isn’t overly concerned. He said keep working to increase her to 58.

We discussed all her updates. He said he is happy that we are getting coordinated care and he is sad that the hospital he works for couldn’t provide the care she needed. He said it makes him want to work at chop. He said there is a reason chop is world renown. He said he is just so grateful that we have a complex team and that they are all on the same page.

Her neurologist called me on the way to the pediatrician. He had just looked over her whole exome sequencing results that identified the adnfle gene. He said this isn’t what we wanted to see but also not shocking. He said it does confirm the epilepsy that we had already suspected. He said he will not even consider decreasing seizure meds until she is seizure free for one full year!!!! If we hit one full year then we will repeat the sleep deprived eeg and go from there. (This will be a ways out).

We already had heard him use the words nocturnal seizures and he has told us that is epilepsy but every time I hear that word it scares me so much. It’s terrifying. I can handle surgeries and tubes but epilepsy/seizures scare me. I don’t handle them well. We are grateful that she has a pulse ox at night as well as her seizure watch (thank you holly for setting up). Without them I don’t think we would sleep much.

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