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Subject:
From:
Elisa Casey <[log in to unmask]>
Reply To:
Lactation Information and Discussion <[log in to unmask]>
Date:
Fri, 27 Aug 2004 21:27:22 -0400
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On Friday 27 August 2004 19:06, Automatic digest processor wrote:
> Date:    Fri, 27 Aug 2004 12:32:11 -0700
> From:    Brenda Phipps <[log in to unmask]>
> Subject: Neurofibromatosis and milk supply
>
> Hello,
>
> Just wondering if anyone on the list has dealt at all with the illness
> neurofibromatosis, and if so, has it effected milk supply in the mother?
> Can it effect milk supply due to carnial nerve damage?
>
> I have a mom with this disease who has been feeding and pumping
> regularly for 2 months, and cannot understand why her supply has never
> been good.
>
I can only give you my own experience here (n = 1).  I myself am affected
with neurofibromatosis.  I have a daughter (who, at age 5y 11m, is
seemingly unaffected) who I have breastfed very successfully.  I was
induced at what we thought was 39 weeks (but more likely really was 37
weeks!) for borderline pre-eclampsia and otherwise had a SVD.  Rhianna
was small- only 4 lb 9 oz.  She dropped down to 4 lb 3 oz at 48 hours (we
were discharged since she was perfectly healthy despite being tiny) and
gained to 5 lb 1 oz at 1 week 2 days, 5 lb 8 oz at 2 weeks 2 days, and
was 7 lb 12 oz at 1 month of life.  She continued breastfeeding
exclusively through 8 months of age and held her own curve on the growth
chart.  She continued to breastfeed heavily along with solids through
about 24 months and has decreased breastfeeding to where she nurses very
briefly a couple of times a day.  Supply was never a problem.  I pumped
for her while at work and typically got 8 oz combined the first pumping,
about 6 oz combined the 2nd, and about 4 oz combined the third pumping.
(This was on night shift weekends.)

I'd be more inclined to think that it's something else beside the
neurofibromatosis.  It would be worth investigating the usual suspects-
type of delivery, mother/baby separation at birth, blood loss, retained
placenta, etc.  Are there any latch issues with the baby?  Tongue tie?

Are there signs yet whether the baby is affected?  While many babies who
have inherited NF are born with cafe au lait spots, others are born with
none and develop them throughout the first couple of years of life.  I'm
sure she's aware that there is a 50% chance that the baby inherited the
NF as well.  In any case if there were any early indications of NF it's
entirely possible that there was separation-- although not for a good
reason provided APGARs were fine.  (What do they expect?  For the baby to
grow a 3rd arm or something??)

I think it would be worth getting more history on this mom.  BTW, if she'd
like to talk to another mother who is living with NF, you have permission
to forward my e-mail address to her.

--
-Elisa H. Casey, MSN, ARNP
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