Dear Elisa, Dr. Rob, and others,

The mom whose baby has CF should, of course, continue to nuse this baby. The
primary threats to this child in infection!  Every respiratory infection
damages the lungs a little more shortening the life span.  I just attended a
funeral this past February for one of my son's close friends that we have
known since 4th grade.  He was 22 and had severe CF.
The mother of this baby should be supported and encouraged to nurse this child
as well and long as possible, hopefully well into toddlerhood and the pre-
school years.

Noone to my knowledge has mentioned Jan Ellen Brown, who spoke at ILCA several
years ago about CF.  Her daughter has CF and Jan Ellen has become an expert,
wonderful source of information on the subject, and wonderful advocate for CF
children and their parents.  I'll try to find her current phone and address
and post that ASAP.  She is (or was) president of one of the CF organizations.

What I remember from her lecture was that to give the baby the enzymes, the
parent can wet a finger in water or breastmilk and dip the finger in the
enzymes after opening the capsule.    Then mearly let the baby suck the
enzymes pellets off mom's finger.  It really is not hard at all and the baby
does not have to have the enzymes mixed in applesauce or any other way that
may not be appropriate for the age of the baby. (does not need to be mixed
into milk in a bottle etc.)  These enzymes are vital with each feeding for the
infant to digest his/her food as the thick mucus that is the hallmark of CF
blocks the pancreas.  Babies with CF typically eat huge quantities, nurse a
lot,  and don't gain weight.  They have big oily, smelly stools because of the
poor digestion and resulting malabsorption of nutrients.

I'm sure there is a tape of her lecture available from the ILCA .  Sorry I
can't remember what year it was.  ('94 or '95 perhaps, can anyone else
remember?)  I'll post more information when I find it.

Jane Bradshaw RN, BSN, IBCLC
Lynchburg, VA

Pediatrician has instructed parents to give pancrease caps
mixed in applesauce (which baby refuses) mom tried dissolving caps in
ebm to no avail.