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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