I have a patient with Olser-Rendu-Weber Syndrome. She has lung involvement--she had 1/3 of her lung removed, 5 surgeries on her nose for telangiectasias, and part of her bowel removed. Her baby is about 6 weeks old. She has been struggling with overactive supply and cannot slow down her milk supply, despite using cabbage, ice, nursing 6, then 12 hours/side, etc. In addition, her baby has reflux. She stopped breastfeeding "cold turkey" without my knowledge. For three days she did not nurse or pump. On the fourth day, I convinced her to resume pumping and using cabbage. The engorgement, which she has been experiencing since delivery, has not subsided. Now she is experiencing symptoms of mastitis. She has no fever due to the fact that she has been taking Tylenol since she weaned her baby. She is desperate to end her misery. Her physician put her on Parlodel. My question is this--is anyone heard of these patients having possible pituitary involvement? My husband, who is an anesthesiologist, did her anesthetic for a tubal ligation after delivery. In 20 years of practice, he has only seen one case of Osler-Rendu-Weber Syndrome. I am eager to hear if anyone out there has any experience assisting patients with this syndrome breastfeed. Warmly, Sharon Gollman, RN, BSN, IBCLC *********************************************** The LACTNET mailing list is powered by L-Soft's renowned LISTSERV(R) list management software together with L-Soft's LSMTP(TM) mailer for lightning fast mail delivery. For more information, go to: http://www.lsoft.com/LISTSERV-powered.html