Guest guest Posted May 5, 2004 Report Share Posted May 5, 2004 Hi, my name is Jane Loscheider. My daughter (8 months) was newly diagnosed with RSS at Mayo Clinic in Rochester. I am so excited to be a part of this group. Because she has been recently diagnosed I am trying to get as much information as I can about the syndrome. My burning question at this point has been what to do about night feedings. eats well, I think- about 20 to 22 ounces of formula/day and now about 2 jars of step 1 food/day. She sleeps through the night and I am hearing so much info. about night time feedings or polycose. Can anyone provide me with some input if they have a child that eats about the same and what they have been told to do. We live in ND and so this syndrome is not well known in my area. I would appreciate any info. On another note I am also wondering if another parent who has an RSS child with the box shape face is out there. This had been the one feature that threw our physicians off but after emailing with Jenn she told me about some other children with this same feature. I was hoping to see a photo (and I will share mine) to see some resemblence. from desolate ND, Jane Quote Link to comment Share on other sites More sharing options...
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