I'm sorry that I don't have any resources to share, I'm just shaking my head at the lack of logic in the suggested treatment plan here ...
Baby is growing and thriving on her mother's breastmilk, obviously tolerating it fine. But *in case* she might need supplemental nutrition at some point down the line, we should take her off the known nutritious and tolerated breastmilk, and put her on the artificial substitute which they suspect may not be tolerated: "so baby can be tested on various formulas to determine if allergic to dairy or soy."
Makes no sense at all. Not to mention, pumping rather than breastfeeding disrupts the beautiful feedback allowing mom's breasts to respond to baby's needs and make milk in the quantity and composition required. Why disrupt such a beautiful partnership and risk weaning when they don't even know if baby is able to tolerate any of the artificial options?
If this were my baby, I would be asking the doctors to provide risks and benefits of potential treatment plans. It seems to me, as baby is doing well on breastmilk, the risks of weaning and not having a safe and reasonable alternative food are much, much higher than the possibility that mom's breastmilk will prove insufficient for baby's nutritional needs before baby is able to tolerate supplemental foods. And while nutritional supplements can be trialed for introduction *if and when* needed for a concerning growth pattern, should the baby experience issues with the various formulae they propose weaning to, bringing baby back to breast/reestablishing mom's supply may be much more difficult.
That was my long-winded way of expressing the old standby: if it ain't broke, don't fix it!!
Call me puzzled,
Spencer Joslin-Montlick, MD, Breastfeeding USA Counselor (Central CT)
Responding to:
Allison Laverty Montag <[log in to unmask]>
Subject: Info on FPIES
PTP
I have a mother whose child has been diagnosed with FPIES Food
Protein-Induced Enterocolitis Syndrome. http://fpiesfoundation.org/ . Baby
is 11 months old and cannot eat solids, she is exclusively breastfed. Birth
weight was 6# 4 oz. She is currently 21# and is thriving and in the 75%.
Mother is being instructed to wean so baby can be tested on various
formulas to determine if allergic to dairy or soy. They are considering
introducing Alimentum. Mom does not want to wean and is feeling pushed into
it. She is also being told to pump and they will use her milk to mix with
formula to entice the baby to drink it. Baby currently will not take a
bottle from Mom.
She is being told her milk will not have enough vitamins and nutrients in
the long run.They are concerned with weight gain problems in the future.
Baby cannot eat oats, rice, green beans. Mom eats them and baby tolerates
them well via breast milk.
They will likely be going to allergy specialists in other states as this is
very rare and there are no local specialists. Allergist admits to not being
very familiar with the syndrome.
I am look for good, solid information for Mom. Any specialists, contacts,
support groups, resources you can suggest would be greatly appreciated.
Thank you, ladies.
Allison Laverty Montag BA, RLC, IBCLC
Wisconsin, USA
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