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

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