I thought I'd post an update from the ENT visit yesterday. We've been on a bit of a medical marathon this week, and I will be glad when Saturday arrives and we get a break from all the doctors' offices!
The ENT told us the EKG and urinalysis were normal (which I already knew, but was glad to hear again). She noted Nolan had fluid in his right ear, so we have to go back to her office at the end of February to check on that ear. She was also quite concerned about the frontal bossing(unlike the pediatrician) and is sending us in to see a geneticist and to get a full head and temporal bone CT scan.
I took Nolan down for his head X-rays this morning. I should hear back from the pediatrician on Friday or Monday. X-rays are not the diagnostic standard for craniosynostosis, but are a good first step. We're getting a full head CT anyway, so that will definitely let us know if his sutures are closing prematurely.
The geneticist called and we have an appointment for February 8. I'm glad we got in so quickly! We'll start the process of looking for syndromes associated with hearing loss and frontal bossing.
The bad news is that our insurance company is balking at the temporal bone CT. This is a standard part of the diagnostic process for kids with hearing loss- to visualize the cochlea and vestibular system. Oddly enough, they don't require approval for the full head CT. Because of the difference in what they are willing to cover, we may have to do two separate CT scans. This means Nolan will have to be sedated twice, which is frustrating at best. The ENT's office is currently arguing with the insurance company to get them to cover the temporal bone CT. If the ENT's office doesn't prevail, we'll go ahead with the CT scan and begin the appeal process to get the temporal bone CT covered. Insurance companies can be quite terrible to deal with. They're great if you never need medical coverage, but if you have any medical issues be prepared for many fights!
Anyway, we should know by tomorrow whether or not we get to fight Univera for coverage of the temporal bone CT. It's a necessary part of Nolan's diagnostic process. Sheesh.