Results

I received some good news as I was grocery shopping today! Landon's nephrologist called to let us know what his Cystine level was when checked about 2 weeks ago. The test included a blood draw that was sent to the only lab in the country (in California). The lower the better! We are looking for his level to be less than 1. Landon's was 1.5! When he was initially tested in the hospital, his level was 2.4. Yayy! Over the past two weeks, we have increased his dose of Cystagon from 25 mg, to 50mg the next week, to 75mg this week. Our goal was to reach 125mg which is the appropriate dose for his weight. His nephrologist was okay with keeping the dose at 75mg. He has to have another blood draw next week so we will see what that indicates. Not only did we increase the dose, but we have been giving him the medicine right through the G tube instead of putting it in the bag with his formula. Hopefully that makes even more of a difference! I will continue to update!