Guest guest Posted March 13, 2005 Report Share Posted March 13, 2005 Hi Brigitte From what I understand, although the UPD 7 RSS kids have the milder form, it is milder in terms of facial features not necessarily symptoms. I have heard that they are also on the smaller end of the scale which certainly fits Charlie. Charlie was fed through a NG tube from 5 months of age because he just was not drinking enough from a bottle. He was losing weight or not gaining at all and was frequently sick ie pneumonia, dehydration etc. When he started pulling the NG tube out every 2nd day at about 12 months of age, we decided that a G tube would be appropriate. He has since gained weight steadily and although still very tiny, is not now underweight for his height. He does not have much orally and is getting worse with oral feeds but he is having enough calories via the tube and that is reassuring. He is also fed on an overnight pump and this has minimised the hypo episodes significantly. Is Bobbi underweight for her height? Does she get sick much? Regards Alison ( 3yrs, Charlie, 20mths, 16lbs, 69cm Gtube zantac, about to start GHT) > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 14, 2005 Report Share Posted March 14, 2005 Hi Alison Bobbi is currently 11lb 12oz and 64.5cm so is a little under weight for height, she has only had a few colds, nothing else. She is suffering from teething at the moment and her feeding has been down to 200ml a day for the past 5 days, and has started to pick up abit today, I think she has lost some weight which worries me sick but just hope she can gain it again quickly, she has done quite well up til now gaining 2-3 oz a week. I just keep my fingers crossed that she can do without a g tube it is my worst fear! Regards Brigitte Re: UPD 7 (Brigitte) Hi Brigitte From what I understand, although the UPD 7 RSS kids have the milder form, it is milder in terms of facial features not necessarily symptoms. I have heard that they are also on the smaller end of the scale which certainly fits Charlie. Charlie was fed through a NG tube from 5 months of age because he just was not drinking enough from a bottle. He was losing weight or not gaining at all and was frequently sick ie pneumonia, dehydration etc. When he started pulling the NG tube out every 2nd day at about 12 months of age, we decided that a G tube would be appropriate. He has since gained weight steadily and although still very tiny, is not now underweight for his height. He does not have much orally and is getting worse with oral feeds but he is having enough calories via the tube and that is reassuring. He is also fed on an overnight pump and this has minimised the hypo episodes significantly. Is Bobbi underweight for her height? Does she get sick much? Regards Alison ( 3yrs, Charlie, 20mths, 16lbs, 69cm Gtube zantac, about to start GHT) > Quote Link to comment Share on other sites More sharing options...
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