I have an interesting case and I need some input/insight (mom has 
given me permission to post):

Primipara
Vaginal Delivery at 26 weeks
Infant 4 pounds and change
Spent 4-5 days in NICU (transitioning issues) then discharged home, 
exclusively breastfeeding
Infant gained weight appropriately for first 3 months of life (5-7oz/week 
until approximately 1.5 months ago)
Over last 5 weeks, gained 10 ounces in month and no weight gain over 
5th week
Infant pale
Anemic
Blood in stool

At this point pediatrician dx with milk/soy allergy.  No atopic skin 
reactions noted or dx based on blood in stool and inefficient weight gain.

I did not know what came first, blood in stool or growth retardation.  
Were they directly/indirectly linked or coincidental?

Infant would not take bottle AT ALL.  Pediatrician/hematologist/ and 
eventually Gastroenterologist agreed baby needed to be feed at breast.

Eliminated all sources of milk/soy from mother’s diet.  We recognized it 
would take approximately 2 weeks to clear.

PO iron not effective, transfusion given.  During admission to hospital 
for infusion, infant had GI scope and biopsy taken.  GI doctor assumed 
based on scope that we were looking at a milk/soy allergy.

Biopsy just came back and GI has confirmed it NO longer looks like a 
milk/soy allergy, and instead feels it may be a “crazy immune disorder” 
and suggested to mom it may be Crohn’s.  

Mom is taking baby to Children’s Hospital for further evaluation.

I know blood is stool has been a hot topic lately, but I really need some 
insight.  I have never heard of infant Crohn’s and I guess I never 
suspected such a dx with a breastfed baby.  Has anyone else ever had a 
similar case?  Do you have any recommendations?  Mom is going to 
maintain her elimination diet of milk/soy until we have further 
information.  Is it diet related?  

I would appreciate any help.

Thank you, 

Casi Leahy
BA, RN, MSN, LCCE, IBCLC

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