Visit with Endocrine @ChildrensPhila ❤️
Riley’s endocrine appt went well. We will draw some extra labs during his next transplant appts (November), and do a bone density scan around the same time. Riley did do a xray today before we left to check bone age.
We did briefly discuss growth hormones, but Riley seems to be where he needs to be for his age minus stature. Future labs will better determine that. Transplant is who originally mentioned the growth hormones, and Dr Mancilla agreed that a lot of transplant patients receive them because of long term steroid use, however, she isn’t aware of any with Loeys-Dietz (connective tissue disorder). She has concerns for any vascular issues they could cause. She is going to talk with Dr Drant (LDS doc). We explained that we’re not interested in doing anything that would put Riley at risk. Not for his stature. So we’ll see what the future holds.
#CHD #Heterotaxy #LoeysDietz #Transplant #Warrior #BeatingtheOdds Everyday. ❤️♻️💜