I need input from anyone on Lactnet with experience with children with
desquamative interstitial pneumonia.  The child in question was weaned 10
months ago after being BF for three years, during which time mother had to
adhere to a strictly non-allergenic diet.  She was born very SGA and has
congenital diabetes, and has developed severe allergies and celiac disease
since.  Her pancreas is basically wiped out.  Cortisone therapy has not been
successful for her lung condition, which was diagnosed last December, and an
immunosuppressant drug called Prograf (tacrolimus) is now being tried.
She is not in the hospital, but can be admitted if the family feels they
need a break from being the full-time caregivers or if she is sicker.
Doctors are doing everything they can think of, but this is a rare condition
in a rare child so I am using Lactnet on the chance there is someone out
there who can help the family.  They would like contact with anyone who has
experience with, or information about it.
If your reply is BF-related please send it to the list *and* to me directly.
If it only relates to the disease, please reply off the list.

Thanks
Rachel

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