Dear Lactnetters

I need your help for a little girl, 8 years old. She has a rare illness,
ataxy telangiestasy (hope you can understand, I don't have the translation
in my english dictionnary) ; it is a cerebellous and immunologic disorder
(her uncle died recently of the same illness) ; she has an IgG-2 and IgG-4
deficit. When she was a todler, she get a lung's infection with pyocyanic,
and was treated with success with human milk (mother milk first, her mother
was breastbeeding the subsequent baby, milk from milk bank after). Human
milk was given very discreetly, with help from a pediatrician full of
willingness, and permetted her to stay infection free some years. But, 2
years ago,  the "great specialist" who follow this little girl arrived to
learn the fact and was absolutely furious, because human milk was not in the
protocol of treatment he wanted to experiment for the publication he wanted
to write on this illness ; he required to suppress human milk.

Soon, the little girl suffer again from the lung's infection to pyocyanic,
which induced severe bronchial distention, and nothing arrived to get off
the infection. Now, the great specialist is OK for giving human milk to this
little girl, and prescribed 120cc per day, in 3 doses.

But the little girl is in a bad state of health now. The bronchial
distention makes her very obstructed, she needs respiratory physiotherapy,
and all of that makes her vomiting a lot. Very difficult to give her human
milk 3 times a day, and to be sure she keep it. So, we would like to ask :
. does some of you have an experience of this sort of illness ?
. the milk is pasteurizated, and a part of IgG are probably destroyed ; are
120 cc enough in this case ?
. is it absolutely necessary to give it in 3 doses ? would the result be the
same or not with the same total dose of human milk given once or two times a
day ?

Thank you a lot for all the help you can give.
Kindly
Françoise Railhet
Manager of the LLL France Medical Associates Program
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