Just a reprint of what I sent to Lisa.

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> From: Nofia Altman <[log in to unmask]>
> To: Dave and Lisa Logan <[log in to unmask]>
> Subject: Re: cystic fibrosis and other ramblings
> Date: Wednesday, September 25, 1996 12:10 PM
>
> Hello Lisa,
>
> I have a very close friend who gave birth to a child with cystic
fibrosis.
>   He was born with immediate failure of one kidney and
> an intestinal obstruction; she was told that he wouldn't live 24 hours.
> He's now 9 years old.
>
> I called her especially to get the info for this message.
> She received the medicine from the hospital for drying up her milk, but
she
> said that when she brought the baby home a month later, she was able to
> nurse him and nursed him for over  a year.
>
> She says the loss of weight is due solely to the CF and he must be put on
> the Pancreas enzymes ASAP!  It is possible to open a capsule and insert
the
> granules into the baby's mouth while the baby is nursing, or to spread
the
> granules on the nipple area.
>
>   The mother should NOT try to dissolve the granules in her breast milk
in
> a bottle because the granules need to reach the deradendum and dissolve
> there.
>
> If the baby is going to be put on the special substitute, they need to
> decide very soon, because it does not taste good (it smells like
> regurgitation, because it is partially digested) and the baby might
reject
> it, especially after having been breastfed (which tastes SO much better!)
>
> Lanie says that as far as weight gain goes, the baby did not gain a lot
of
> weight while he was nursing, but he gained enough to be healthy.  The
> mother should go to a doctor who understands that and won't pressure her
> about the baby's weight gain unless there is a very serious problem (Ie:
> weight loss)
>
> She says her son gained more when she started him on solids, and that CF
> kids need a LOT of calories.
>
> If the baby wakes up to eat at night (which he will because he's CF) then
> she has to give him the enzymes then as well.  The enzymes must accompany
> every nursing without fail, or he will not absorb any nutrients.
>
> As far as the benefits of breastfeeding, she said her son has a lot of
> self-confidence and she strongly feels it is because he nursed.  They are
> very close and he has a very trusting relationship with his parents.  I
> have met this child myself, and because of his attitude and the way he
> behaves, I never knew he was sick until they told me.  The child is a
very
> happy person despite his health difficulties.  Lanie says that for his
> self-confidence alone it was worth the trouble it took to BF.
>
> Lanie strongly suggests seeking out one of the main CF centers in the
> US/Canada and finding a pro-BF doctor there, who can give a lot of good
> advice about giving the enzymes.
> Her brother was a doctor in Canada, so she was in contact with the center
> in Toronto and they were much more pro BF than in Israel.
>
> Another suggestion is for these parents to seek out other parents of
> children with CF and find out what works the best for them.  It really
> helps parents, especially to see children who are older (five, and six
> etc).  It should be  noted that there are CF patients who are now
reaching
> 60 years, which was never dreamed of before this century.
> There are two major branches of CF: Pancreas problems and lung problems.
> Some kids have both and some kids have one more than the other.  Lanie's
> child has more problems with his pancreas, which is what sounds like your
> couple's baby has.
>
> Good luck and we hope that whatever this couple decides, that they will
> feel confident and resilient and be strong for their child to help him
> through the coming years.
>
>
> Nofia Altman
> ----------
> > From: Dave and Lisa Logan <[log in to unmask]>
> > To:
> > Subject: cystic fibrosis and other ramblings
> > Date: Tuesday, September 24, 1996 1:20 AM
> >
> > Greetings everyone! I need some expert advice and good suggestions
:)...
> >  First, I have been assisting a mom whose fullterm baby was diagnosed
> with
> > an intestinal atresia, subsequently went to surgery and now has been
> > diagnosed with cystic fibrosis. She has been pumping and puts the baby
to
> breast
> > whenever she visits. The baby nurses pretty well, is totally off IV
> fluids
> > and receives bottles only when mom is unavailable. The problem is that
> the
> > baby is losing about 30gms (1 ounce) every day and Peds Surgery and the
> > parents are concerned. The baby is not on enzyme supplementation at
this
> > time as they are going to do another battery of tests to confirm
initial
> > sweat test. Mom seems to have good supply of milk-usually gets 3-4oz
with
> > pumping about every 3 hours and gets only 1/2 oz after nursing. When
the
> > baby is bottlefed, takes a max of 85ml
> > every three hours. Anybody have experience with this type of baby?
> Obviously
> > the parents want to continue breastfeeding but are concerned about
> failure
> > to thrive. I have the info from Riordan and Auerbach and Ruth
> > Lawrence-haven`t gotten to the journals yet!