A little about this test.... The exercise test is performed on a treadmill and lasts a minimum of 10 minutes. To gather data for this test cardiac leads are placed on the chest, pulse ox is placed on the finger, blood pressure cuff is attached to the arm, a nose clip is clipped on the nose and a headpiece gadget hugs the head while holding the mouth piece that you are to keep firmly in your mouth. None of this intimidated our Phoebe.
The beginning of the test consists of stationary breathing tests. Once on the treadmill and hooked up to all the leads and equipment, it's a normal paced walk to start. In a couple minutes the treadmill inclines to have you walking up a hill. After 3 minutes of the hill, the speed of the treadmill is increased to a fast paced walked. After 3 minutes of the face paced hill walk, the speed of the treadmill is increased to a jog. The jog is also supposed to be a 3 minute interval.
I stood next to Phoebe with my hand on the small of her back and my elbow locked into my side so I could help keep her standing straight and from falling too far back on the treadmill. We stayed like this for the 9 minutes Phoebe could withstand the test before she said "my legs are tired".
After unhooking all of the leads and equipment, Phoebe and I sat in the chairs for 5 minutes so she could rest the allotted time before finishing the end breathing tests. It was then time to wait for the doctor to see what, if any, data the test gave us and what he could tell so far.
"Interesting" is the word he chose to use to describe the data we got from this test.
1) Phoebe's lungs are behaving as restrictive. What restriction means is the lungs expansion is restricted which results in decreased lung volume and inadequate ventilation/oxygenation and an increased work of breathing (lungs working harder than they should)
2) Phoebe becomes anaerobic very quickly. What this means is that the cells are using up the oxygen so fast that glucose starts breaking down for muscle energy which results in leg pain and tiredness.
From what he could tell from this data without analyzing it and plotting it out is that there is muscle weakness and a metabolic issue going on. It is going to take him at least a week to prepare the lengthy reports to send to her doctors, so we have to wait until then to see all the details of what he discovers.
So for now, at the suggestion of this doctor..
-we continue to pursue mitochondrial DNA testing
-get the official scoliosis* diagnosis (he could tell as soon as he was connecting her cardiac leads)
-get the official sleep apnea diagnosis (he was not happy she hasn't been diagnosed since her saturation drops to 90% when she sleeps)
-plan to return to see him for a repeat test in a year
-prepare for more testing this upcoming year because we have a lot more questions now
*Scoliosis "fun" fact: When a patient has scoliosis their arm span is usually longer than their height because of the curving of the spine. This doctor tested Phoebe's arm span and leave it to Phoebe, her arm span is shorter than her height! Of course!