ukbb2003 said:
I guess we are getting into the real issue…insurance. It is an absolute mess. I have another kid that has been diagnosed with autoimmune encephalitis. Dealing with insurance on this has been a nightmare and I completely understand why people/parents give up. They make it almost impossible to get anything done.
Perfect example, we have been waiting on insurance for a decision to start IVIG. It was finally denied after waiting for nearly two months, but it took us calling insurance to find out. By this time, it had been 4 days since the denial and we were told that we had 21 days from the date of denial to appeal. We asked if they could email the letter to the doctor so they could begin working on the appeal. NOPE, they have to mail it and it can take 2-3 weeks.
My wife handles all these kinds of things for us. She ran the back end of several area doctor's offices / surgeons / etc. The insurance is always a problem. The difference with her is that she knows who to call, and what specifically to ask for to get stuff done. We'd be in a world of hurt without her managing the ship.
