We met with the neuro's PA today. Obviously she cannot diagnose, but she has dysautonomia herself and said that all of Paige's symptoms fit, along with her prematurity. She did strongly suggest that we get a 2nd opinion with a different cardiologist. She would like Paige to, at the very least, have a Holter monitor. She did mention that another option would be for Paige to wear an event recorder, which would be worn for a longer period of time in order to increase the chances that it would catch some activity.
She said that most kids grow out of it by the time they are finished with puberty or into their early 20's.
As far as medicine goes... since Paige is not passing out or falling, we can hold off on medicine. Obviously this may change if any cardiac issues are involved. She also felt that there is no reason to push for a tilt table test if the cardiologist doesn't see a need for it. She said... "if it looks like a duck, and sounds like a duck... let's call it a duck."
I found myself reflecting on the discussion under the previous post. Could we have skipped this appointment and continued to play the "wait and see" game. Yep. Do we need to do anything different in Paige's life? Nope.
Could I have relaxed if I would have waited? Nope.
Do I feel at ease now, confident that the diagnosis is correct? Nope.
I have this constant nagging, gut twisting feeling that I am going to be under-responsive to something and Paige is going to suffer because I didn't act quick enough.
Why is this?