Guest guest Posted May 25, 2000 Report Share Posted May 25, 2000 Ann - I normally chat with you about this time each night, but you must be sleeping! I noticed your email about the endo appt, and how Natasha's weight has been falling off. I know that Natasha has always weighed, if I remember from my notes, the same as but was 3 " shorter. I don't know if this has anything similar, but it was , too, that for the last 6 months had such a significant weight slowdown (actually 12 months overall). I honestly feel that it was the increase in physical activity (preschool 3 mornings, ballet and gymnastics for one hour each week). We got some new recipes, switched to a complex carbo (dr. H) diet, and she has suddenly gained a pound. Has Natasha's activity level increased at all in the last 6 months or so? Are you using Pediasure as a milk supplement or anything similar? We went 10 days last November without Pediasure (in KY when we couldn't find any and didn't know that half-and-half was similar). That 250-calorie per day absence related to a 1 pound drop in weight two weeks later!!! I am so sorry that you got only more questions at your appt rather than an answer. And I know that those darn disomy tests take, what, 3 months?? Did the doctors comment at all about RSS? Or was it more " let's wait and see. " Hope to talk to you tomorrow night. Thinking of you. Salem Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 26, 2000 Report Share Posted May 26, 2000 -----Original Message----- >Hi Everyone, >What a day. 2 1/2 hour endo visit... We saw a " endo Fellow, Social worker >and a endo doc that I have not met yet. We went hopeing to just get some >follow up and some further examination into whether or not Natasha has RSS. >What we ended up with was more questions, less answers and a Glucometer and >Natasha having a blood test for the Uni Parental Diosomy 7 test... and some >assorted other blood tests. . . . . Ann, Sorry to hear that your visit was a lot of testing and no answer about the RSS diagnosis. Will you be going back after the blood tests? Did they say anything one way or another about the RSS diagnosis? I might have missed it, but does what types of RSS characteristics does Natasha have? One question for those of you whose kids have had the Uni Parental Disomy 7 blood test -- what exactly does this prove? If they test positive, is this an indication for treatment for something? Ross has never had this test that I know of. When he was a baby he and my husband and I had our blood drawn for a study on RSS done at a children's hospital in Ontario, I believe, but we never heard anything about the results. This may have tested for that, but I'm not sure. Dennise Ross - 6, asymmetry, cyproheptadine (Periactin), GH Bryce - 8, not RSS Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 26, 2000 Report Share Posted May 26, 2000 Dennise, It sounds like (when you all had to give your blood) what they did to us to test Storm for Uniparental disomy on chromosome 7. Storm's test was negative. He had one chromosome 7 from each of us, and not two from me. I think about 10% (someone correct me if I am wrong) of RSS kids have the two from mom. It's just a study, I believe and it doesn't really prove anything. Storm is definitely RSS, just look at him. Carmen, Mom to Storm 4yrs9mos. 36 " 24lbs. Quote Link to comment Share on other sites More sharing options...
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