Cathy, 

I will speak as a very grateful Aunt of a beautiful girl who had a hemangioma on her nose that was treated with Propanolol.  My sister (the girl's mother) is an ICU Charge Nurse at a large hospital and is very well educated and proactive in research and advocating for her daughter's condition.   This was what we learned (disclaimer: I am not an MD or RN, this is my anecdotal experience!)   My niece's hemangioma was on her nose and they began treating her when it was discovered at 4 weeks of age.  As you may know, it is a vascular lesion, and grows until approx age 2, and then can take until age 9-10 years old to dissipate.  While they do tend to dissipate on their own, the deformation to the face, and the impact on the child's self image and impact on social interaction during this very formative time can be tremendous.  Propanolol can have an enormous impact on reversing and limiting vascular growth throughout the growing period of approximately the first two years.

My niece was treated with propanolol, in increasingly higher doses as she gained weight, until 2 years old.  At approx 14 months, the dose was tapered back, and the hemangioma began to grow again, so treatment was continued for several more months.  As your client was advised, during the first year, my sister was told that because it can have an impact on blood sugar, she could go no more than 3 hours between feeds, and she should shoot for 2 hours when possible.  My niece was EXCLUSIVELY breastfed, no formula ever, and my sister was vigilant about not going more than 3 hours between feeds.  I can only guess that in your client's case, the doctor was referring to "feeds" and the mother assumed "formula". (Or the doctor assumes that "everyone" formula feeds, and stated "formula" not knowing that the mother intended to breastfeed).

After a few searches on Google to see what the heartbreaking outcome could have been had my niece not been treated, we are so grateful for propanolol.  It has changed my niece's life.  She is now 2.5 years, and has just a tiny bit of what looks like broken blood vessels on the tip of her nose, but none of the growth and redness/bruising that is to be expected with such a diagnosis.  She has undergone 2 laser treatments, and has one more to completely eliminate any trace of it on her nose, but no one would ever know she had such a diagnosis by looking at her.  Your mother can definitely breastfeed through this process!!

Best, 
Leanna Moore Watson, BS, IBCLC, RLC
International Board Certified Lactation Consultant
 
Santa Barbara County Public Health Department
Nutrition Services/WIC

 Date:    Mon, 23 Sep 2013 23:44:24 -0400
From:    Cathy Urroz <[log in to unmask]>
Subject: Help for mom whose baby has hemangioma in eye

My name is Cathy Urroz, IBCLC and LLLeader from Guadalajara, Mexico.  PTP I´m hoping you can help me here, a mother contacted me for my opinion on the following: her five month old baby has a hemangioma in eye area, the treatment will be propanolol drops, and the dermatologist told her that one of the side effects of this medicine is lowering glucose and told her she needs to feed a bottle of formula after administering the drops.  I almost fainted, never heard of this before.  She would not like to have to do this, but she´s worried that her milk won´t be good for her baby´s glucose levels. This doesn´t sound logical to me, but since I have no medical or nursing background, I wouldn´t know where to begin searching for an answer for this.  Thank you for your help, sending hugs and blessings to all, Cathy Urroz

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