As soon as the doctor came in the room she pulled up Phoebe's spread sheets to show her history of percentile rankings of heights and weights taken by all the doctors at Goryeb. (And since Phoebe has 10 specialists at Goryeb, there is a very thorough history in her records). What she noticed was drastic, steady declines in her height, weight and BMI since March of this year.
Up until March, you saw Phoebe's normal growth pattern. She would fluctuate a pound or two, plataeu for a little, but the record showed an incline. Everything after March showed nothing but decline. The BMI percentile was the most alarming to the GI doc. In March Phoebe was above the 50 percentile for BMI. But at today's appointment, she was below the 30 percentile. And she has not grown in height enough to warrant that kind of dramatic drop.
True to Phoebe form though, her blood work did not give us a clear cut reason for her weight loss. What happened next is one of the reason's why I love Phoebe's team of doctors so much and why, despite still having no answers, I know we have the best team working on Phoebe's care.
Phoebe's GI doctor said "children with chronic pulmonary, cardiac or neurologic problems have been proven to have a harder time gaining weight let alone maintaining their weight. Because of the extra work these systems have to do to work properly and the difficulties they can experience, the amount of calories a healthy 6 year old would consume are not enough for these children."
I have always kept Phoebe's entire team up to date on everything she goes through, tests other doctors order and findings other doctors find. I have always felt her entire team needs to be as up to date on everything as much as possible. Because of this, the GI doctor was aware of the pulmonary issues Phoebe has been facing, most especially in the past 5 months.
This doctor could have easily looked at us and said that since the problem did not appear to be specifically GI related, she was signing off on this issue. Instead, this doctor (like the others on Phoebe's team) looked at the whole patient, all the systems of the body, all the complications and difficulties Phoebe has, and tried to connect the dots of how all these other systems and difficulties play a role in her weight loss.
Phoebe's CT results, shortness of breath, difficulty breathing, and poor pulmonary function test results could be a major contributing factor to Phoebe's weight loss. And by following her spread sheet, the more difficulty Phoebe was having with her lungs/breathing, the more we saw her weight drop.
The GI doctor suggested we do two things. The first is a stool test to see if Phoebe is losing too many fats, Though she is predicting this test will come back normal, she wants to make sure we cover all our bases given Phoebe's history. The second is a food diary to calculate the caloric intake over three days. The diary will then be submitted to a dietician who will analyze what Phoebe ate while taking her vast medical complications and history into consideration. The dietician's recommendation will hopefully give us a better game plan than "eat 7, 8, 9 meals a day".
We submit the completed diary tomorrow evening. Since it's a holiday weekend, I don't believe we will hear anything until the end of next week, at the earliest.