Hi Smileys, thanks for sharing your story. A diagnosis from a pulm, and on the first visit? WOW.
I’m no expert on ANS, but I’m an RN with POTS so I’ve had a few of them - there are many, however. I’ll name them here and let you Wiki them yourself. I think a Tilt Table Test (TTT) is a must have and all EDSers should have one to assess for POTS, if only to establish a baseline for later comparision. POTS tends to arrive abruptly - and it can at any age.
I also had 2 sweat tests to investigate my heat tolerence. In one, electrodes pass a current through your nerves to see how your sweat glands react, decreased sweating/normal/excessive.
In the second, (thermoregulatory, I think it was called) you get heated up in a dry sauna room after being covered in a powder that shows where sweating is occurring. The vitals are also taken often to observe changes in heart rate and blood pressure.
The last test monitored heart rate and BP while doing to the Valsalva. We usually do it instinctively when struggling to defecate, and that is mentioned as they explain what they want you to do. 8 is an awkward age, she might benefit if you bring that up first. Surprise poop discussions with several strangers? Noooobody wants that. Maybe 8yo BOYS.
Finally, I know of one other test for the ANS but haven’t had it yet, it assesses the gastric emptying time (from eating until they see her stomach is empty). She’ll arrive on empty tummy and be given a mostly carb food choice (often grilled cheese sandwich). Imaging of stomach is repeated until she’s empty again.
Hope this helps. Sending good luck and love from our family to yours.