An Update on Tristan
March 25, 2011 – Today Tristan saw Dr. Germain-Lee, his pediatric endocrinologist, for a normal blood workup, but more importantly because of the dramatic weight loss that happened to him 45 days ago. He went from the 6th percentile to the 2nd percentile in weight, which was a significant loss. She said she could not believe the number, but today he had made up the weight, and had gained to the 12th percentile, so either their machine was not accurate at the previous weight (he was NOT reweighed on another machine at the February appointment) or the people taking the measurements messed up. Today they weighed him on two different machines and he had gained weight on both scales. Also, it could be that it was accurate, because Tristan had been sick most of January and lost weight. Then after we got the results of his weight in February, I started to make everything I could with more fat like adding flax seed to everything I could, add heavy cream to yogurt, etc. Dr. Germain-Lee said it is possible that he gained the lost weight back and then put on more weight, because I increased his calorie intake. He also has not been in preschool, and so he is no longer sick week after week like before. So, whatever it is, I feel like I can breathe a little sigh of relief, and I will just keep onward with the changes I made. Also, at the February appointment they said he grew taller. Today when he stood on a more accurate scale, the results showed he did not grow after all.
Another item we talked about with Dr. Germain-Lee was the growth hormone clinical trial study in which she wants to start Tristan. I hope she will have the growth hormone and all funding in place by the summer so we can get started on the therapy. We cannot afford the growth hormone otherwise. Tristan tested as sufficient in growth hormone response metabolically despite the fact he does not grow at normal rates. Unfortunately, because of this, our insurance will not pay for the growth hormone, which costs about $30 – $40,000 per year until he is 18 years of age. So, I feel thankful because I am not sure how we could swing that kind of number.
According to his growth chart, if he were hormonally normal and growing at this slow of a rate, he is projected to end up about 5 feet 5 inches as an adult male. However, because of Tristan’s Albright Hereditary Osteodystrophy (AHO), the surge of growth that normally occurs in puberty would not occur because his bone growth plates would fuse prematurely, and he would be lucky to grow over 5 feet tall. So, basically his future growth curve projected by the charts made for normally growing children means nothing in Tristan’s case other than show a best case scenario where the disease has no effect on his growth. Likely, that is extremely unrealistic. The growth hormone use in sufficient children is a clinical trial study, because there is not much research out there on kids with AHO that are growth hormone sufficient, but who potentially still need the hormone. Only time will show any possible effect as kids enrolled in the study grow, and it will take a several years after that to accumulate final results and conclusions.
Overall, Tristan is doing better since we pulled him out of school. He and Keira go to library once a week, and they LOVE IT. Tristan is also in about eight hours of therapy a week with occupational, speech, and applied behavioral analysis therapies. We changed our insurance plan to allow for better choice of physicians, and next month my children start at a new pediatric clinic that will be more able to handle Tristan’s special health issues. Also, in May Tristan will have the new tutor Megan who will come 6 – 8 hours per week to work one on one with Tristan. I am excited to see the changes in him once we get Megan in our home.