Like all good news we get however, it comes with a "but..." He is approved "but" for some reason they approved him to go to a group of Neurologists he's never been to. We have had way too many problems regarding communication between his Neurologist and us too. This is probably because his Neurologist has actually become "Neurologists" due to a doctor who's only seen him a few seconds while he was hospitalized deciding he'd like to jump in on the case too. This has proven to create more problems than to solve any.
To complicate things more, when they sent my son's records they sent them to his previous Neuro that we'd seen before moving out of state. Now, I don't know where they actually want him to go. This is the communication issue I speak of. I'm sure one doc sent his files to one place while the other filed the paperwork for the insurance to the other place. I am not sure what I want for him at this point. I wouldn't necessarily mind getting a completely new perspective from a Pediatric Epileptologist. These are further specialized Neurologists who deal only with seizure disorders in pediatric patients. A lot of specialized training that I think would be good for him. However, I like his previous Neurologist, and with the plan still being to move back to the state when possible, that's probably who we're going to see again anyways. It'd be nice to keep her in the loop a little bit over the next couple years. All of these people are within one building however, their hospital rooms are only across the hall, and SHOCKER they actually communicate with one another. We'll see what happens though. If that's what we have to do to get someone who at least has new ideas and next steps, then we'll do it.
There is also currently a limit to which he is approved, and they call it a "Final consultation" for Epilepsy diagnosis and management. I really don't know what that means. If it means 1 visit at which point we can't continue following up with this individual, I'm not sure I'm ok with that. We were told to inform the doctor that we'd like to continue seeing them, and ask if they could put it in their note to continue following up there. At that point his pediatrician, who has more sense and communication skills than his 2 current Neurologists combined, can justify further out of state requests. It is a paperwork nightmare, but anything for my guy. So, with our good news, we basically just have more questions to be asked, more phone calls to be made, more phone tag to be played, and ultimately more doctors to annoy to get our answers.
I've determined the life of Epilepsy is always going to be, Good news with a "but..."