Guest guest Posted March 29, 2004 Report Share Posted March 29, 2004 I've only posted once here -my " Roll Call " , but have been reading your posts daily and have learned a lot about RSS. Sorry this is kind of long- I am not known for being brief, but will work on it! My 13 month old daughter had her 1st appointment with the Endocrinologsit today. He asked us what other specialists had said and when we told him possible RSS his face kind of lit up. He responded " That is exactly what I thought the moment you walked in the door- Russel Silver. " He examined her more and agreed that she had some features of RSS, but not all and feels that it is either a mild case of RSS or a RSS type syndrome. I had never noted the bluish/dull tinge to the " whites " of her eyes until he had me look at my husband's eyes next to Meg's. How could I have missed it? I also never really looked at her face from the angle he did to see the triangular face shape and the asymmetry of her cheeks. I guess maybe I didn't want to see it. Anyway, we go back in 3 months to check her growth again, get some blood work and to talk about our progess in the decision making about GHT. He said he would like to get her started around 18 months, if we choose to start GHT. We are already leaning towards doing GHT, I have already done tons of research on it (in preparation for our visit) and have also read how many of your children have had positive results on GHT. Thank you for the input you have already provided to us. I have one question- I see that several of your children have feeding tubes. Is this a " normal " part of RSS or is it very child dependent. Meg eats well and is not undernourished per her Dr, so maybe we won't have to do tube feedings (she hasn't been tube fed since she a month and 1/2 old & in the NICU after her birth). Ginger Mommy to (13 months- 12lb 11oz, 26 inches)newly dx RSS. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 30, 2004 Report Share Posted March 30, 2004 Ginger - Welcome! With regards to your question on tube feedings, normally a tube is not needed for a child who eats well but doesn't gain weight. This is because for a child who can eat well but is flat in weight, it can take as little as 10-20% increase in calories to get them gaining, and this increase can be accomplished relatively simply with caloric/nutritional additives, or with the antihistamine Periactin/cyproheptadine. If your daughter goes on GH, and her growth velocity suddenly doubles, her caloric intake will be even a bigger issue. Keep reading, and good luck! Salem (, 8) > I've only posted once here -my " Roll Call " , but have been reading > your posts daily and have learned a lot about RSS. Sorry this is > kind of long- I am not known for being brief, but will work on it! > > My 13 month old daughter had her 1st appointment with the > Endocrinologsit today. He asked us what other specialists had said > and when we told him possible RSS his face kind of lit up. He > responded " That is exactly what I thought the moment you walked in > the door- Russel Silver. " He examined her more and agreed that she > had some features of RSS, but not all and feels that it is either a > mild case of RSS or a RSS type syndrome. I had never noted the > bluish/dull tinge to the " whites " of her eyes until he had me look > at my husband's eyes next to Meg's. How could I have missed it? I > also never really looked at her face from the angle he did to see > the triangular face shape and the asymmetry of her cheeks. I guess > maybe I didn't want to see it. > > Anyway, we go back in 3 months to check her growth again, get some > blood work and to talk about our progess in the decision making > about GHT. He said he would like to get her started around 18 > months, if we choose to start GHT. We are already leaning towards > doing GHT, I have already done tons of research on it (in > preparation for our visit) and have also read how many of your > children have had positive results on GHT. > > Thank you for the input you have already provided to us. > > I have one question- I see that several of your children have > feeding tubes. Is this a " normal " part of RSS or is it very child > dependent. Meg eats well and is not undernourished per her Dr, so > maybe we won't have to do tube feedings (she hasn't been tube fed > since she a month and 1/2 old & in the NICU after her birth). > > Ginger > Mommy to (13 months- 12lb 11oz, 26 inches)newly dx RSS. Quote Link to comment Share on other sites More sharing options...
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