Jordan, my 23 year old son with MSUD, and I traveled to Houston, Texas again in June for the last phase of the Buphenyl trial (see last newsletter Vol 31, Number 1). For two weeks prior to going to Houston, he took the opposite medication (Buphenyl or placebo) of what he took earlier this year. Jordan didn’t think that this drug tasted as bad as the one he took previously and he tolerated it better.
We spent two nights at the research center and again blood and urine tests were done. His intake of formula, food, and snacks was controlled by the staff and was very similar to what he consumed during the first phase. Jordan was comfortable during his stay and spent time doing his schoolwork, watching TV, and playing games.
Dr. Lee expects to be in the data collection phase for approximately 2 years. After that he will analyze his data and share his results.