Hi,
       I have some questions I really need some help/support with. I am
fairly new to Lacnet and I am still learning proper etiquette. I do work in a
professional setting (private lactation practice doing home visits with 3
consultants). However, I am writing today on a personal note that I think is relevant
to recent posts on the benefits of any breastmilk at any age. I think (hope)
this post is appropriate after reading the rules.
       Our third child has an undiagnosed genetic disorder that involves
severe feeding problems, short stature and slow growth. The team working with her
(genetics, pediatrics, neurology, endocrinology, etc.) have no clue what the
problem is but that it is genetically based. It was originally thought to be
Rubenstein-Taybi Syndrome (FYI..there is an article in archives of JHL on this
syndrome and breastfeeding) but that diagnosis has been taken off the table.
       Here is some feeding background (as brief as possible). After long
term breastfeeding (no pumping) of my first two children, we have struggled to
give the same nutrition to our third. I fought against a high and narrow palate,
recessed chin, neurological issues, minor low tone, and lack of feeding cues
to feed her at breast as much as possible. I also pumped 6-8 x a day and used
Domperidone. After struggling at breast and fingerfeeding for 5 months, she
was true FTT and we opted for tube feeds (NG first then G-Tube).
       We began getting milk from a milk bank (after struggling to find a
pediatrician who would write the prescription) because I could not pump enough.
While my breast was still offered for all feeds we depended on the pump feeds
at night for weight gain. She received all banked breastmilk at night, fresh
from Mom in small quantities during the day, and whatever solids she would take
at 8 months.
       We followed this plan until she was 1 year than we introduced an
organic soy-based toddler formula to supplement the breastmilk because she could
not eat enough orally. We continued to use the banked milk as a solvent for the
organic toddler formula in the pump for night feeds (instead of mixing with
water). This added calories and the benefits of breastmilk (albeit pasteurized
EBM).
       She still continued to grow slowly but was progressing at a nice pace
for her.  She also never has had a single, ear infection, respiratory
infection, constipation, or much more than short colds. This pleased her medical team
who are used to seeing special needs kids with more illnesses or medical
problems.
       Here is our current situation. The nutritionist involved just did a
new evaluation. First off, she told us the breastmilk is useless because it is
from mothers of infants and therefore has little to no benefit for our 27 month
old. We explained that we realize she needs other foods at this point but
that the breastmilk is still beneficial so we use it as a solvent for the formula
instead of water. She understood this but seemed unimpressed by any continued
benefits of banked breastmilk.
       Next she explained the need for complete nutrition and that the over
the counter organic formula was not providing this since our daughter takes so
little other foods by mouth. We understand this. She brought out 3 samples of
prescription formulas as options to replace the organic toddler formula. We
are unhappy about all 3 choices but opted for the one with the closest to
"natural" ingredients for the pump feeds.
       We would like to continue with some of the banked breastmilk for bolus
feeds during the day. I will continue to mix it in to her food anyway.
However, both the nutritionist and the pediatrician say there is no benefits for her
because the milk expressed by the donor moms is "infant milk." I say if it
can benefit adults how can it not be helpful to my genetically challenged 27
month old? I would love to have some evidence to back this up. Can anyone refer
me to something helpful?
       Please know, we do understand that she needs age appropriate nutrition
and we certainly wouldn't depend on banked breastmilk to fulfill her total
daily nutritional needs at this age. However I would love to present the team
with some evidence based research of the benefits of continuing to use EBM.
Thanks, Heather Dana

P.S. In the two days of using the new formula her poops are so hard and
stinky!

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