My daughter has PELVIS Syndrome and we really struggle to keep the hemangioma around her anus from tearing open. We have both metrogel and desonide to help and she takes miralax every day to keep her stools really soft (she is 9mo now so solid foods have firmed them up a lot). Good luck with the specialist, these things can cause major internal issues so a full workup is essential.
Ellie- born 5/24/11
Forehead Hemangioma, Finger Tip Hemangioma
Large Diaper Area Hemangioma w/ PELVIS Syndrome
Tethered Spinal Cord, Bladder Exstrophy/Cloacal Anomoly
Diagnosed with Rhabdomyosarcoma 3/19 begins 46 week Chemotherapy treatment 4/9
On Propanol 1.4mL/3 times daily