Thanks for all the information. Unfortunately, she is under one of the best pediatric cardiologist. Apparently, people drive 8 or 9 hours to see this doctor.

The stress test was the one with the pulmonary function and her lungs were cleared and they said they were no breathing issues. This is what we were told about the stress test:
- at level two kids her age have a max heart rate of 142. When she started level 2 she was already at 145 heart rate.
-then at the final stage of the test her heart was at 218 and her blood pressure was tanking.. she got to 82/49 and the test was stopped.
- we were told there clearly is an issue but the doctor was going to go back and review her blood work and the results from the halter moniter she wore for 10 days again
- The conclusion from that was that there was no clear signs of why this was happening and no wires to fix.
-no medication would be given at this time because of how low the blood pressure got
- we were to recondition the heart meaning getting her heart rate up to 130 for 2 1/2 hours a week and then as high as we can get it for 30 minutes. So we did this for about a month before she started band camp (which we were cleared to start by cardiologist)
- we were told to restrict her to 3 hours a day and that it was just conditioning it faster.
-nothing has improved and I can't even get an appt