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Date: | Sat, 4 Sep 2010 00:04:44 +0300 |
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Hello Phyllis!
I don´t have research but I have also a child with some unknown
immunodeficiency. My 11 year old daughter has some kind of quite severe
autoimmune syndrome (her symptoms are IPEX-like, but the basic gene testing
for IPEX came back negative). Her problem is the loosing of the tolerance to
her own tissues (congenital type 1 diabetes, pancreas insufficiency, severe
allergies and pulmonary fibrosis) and she get respiratory infections easily
(pneumonias). She has been on high dose prednisone since 2,5 years of old
and later also on Prograf and Cellcept. This medication seems to keep her
immune system in better control and she dont´t get infections as often and
the tissues (especially lugns and gut) are not getting worse. She does not
have a diagnose nor prognosis, we are living day at a time basis.
My point is, I breastfed her until 2 years 11 months and she was better
somehow as long I did breastfeed her. Her infections were milder, the gut
better and the lung disease was also better somehow. I have been thinking
later at harder times that perhaps I need to try relactate for her but
haven´t done that (she did taste my milk when I breastfed her younger
brother but did not ask another time). I have been thinking that she got
protection for infections, the gut got growth-factors and maybe other immune
system support also. According some research, the baby´s immune system is
affected by breastmilk positively so with this kind of situtation when the
immune system is not working correctly, the breastmilk might help it work
better. With SCID the problem is severe deficiency of immune system and
severe infections, so the situation is different.
If the baby has really SCID, maybe he / she might get pastorized breastmilk?
It is not the same as breastfeeding or fresh breastmilk, but still better
than ABM (which might not be sterile either?). What are they using to feed
the baby?
Best wishes,
Pia Ruohotie, RN and breastfeeding counsellor
From Helsinki University Hospital, Finland
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