Guest guest Posted March 28, 2003 Report Share Posted March 28, 2003 Angel - what length was your son born at, what gestational age, and what birth weight and length was your older son born at. Remember that there are many idiopathic SGA kids out there, that are very similar to RSS kids, but are not RSS, but the treatment is the SAME. We group both groups together at the MAGIC convention. Salem > Hi everyone, > > I just need to blow off a little steam. We finally had the > appointment with the genetics doc today.(we only wanted to find out > if he had the thing with the 7th cromazone) And she had the gall to > tell me that my son wasn't RSS because he wasn't IUGR. Has anyone > else been told this? It took me 4 years to find out what was going > on with him. And now some doc is trying to tell me that nothing is > wrong with him and he's just little. Anyway we are coming to the > convention in july and i figure we'll know for sure after we see > Dr.H. I can't wait. well i better get goin. Hubby is gripin that > i'm spending too much time on the puter. > > Angel > mom to Donovan 9 and 4 1/2 (RSS) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 28, 2003 Report Share Posted March 28, 2003 Angel, Do you have pictures in the Photo section that we could look at. I wanted to see if had a real RSS look to him. My son was not IUGR and has some RSS characteristics but not all of them. As said, Dr. H told me that he has RSS but even if I don't believe it, we will still follow the same protocol to get him some heigth. Pattie > > Hi everyone, > > > > I just need to blow off a little steam. We finally had the > > appointment with the genetics doc today.(we only wanted to find out > > if he had the thing with the 7th cromazone) And she had the gall > to > > tell me that my son wasn't RSS because he wasn't IUGR. Has anyone > > else been told this? It took me 4 years to find out what was going > > on with him. And now some doc is trying to tell me that nothing is > > wrong with him and he's just little. Anyway we are coming to the > > convention in july and i figure we'll know for sure after we see > > Dr.H. I can't wait. well i better get goin. Hubby is gripin that > > i'm spending too much time on the puter. > > > > Angel > > mom to Donovan 9 and 4 1/2 (RSS) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 28, 2003 Report Share Posted March 28, 2003 Hi , The geneticists we have dealt with are Dr. Bonnie Pagon and Dr. Ian Glass. When is your next genetics appointment? I sent Angel a private note - I think I would be frustrated too, to have the only possible diagnosis thrown out without any other options offered (been there & done that, more times than I care to remember!) Chris > Message: 6 > Date: Fri, 28 Mar 2003 00:35:03 -0800 (PST) > > Subject: Re: annoyed > > > Angel, > Which geneticist did you see? We saw Dr. Stiener in Anchorage last November. We have another genetics appointment coming up and I requested a new doctor. The last one agreed that Zoe had RSS (we were reffered by the Endo. Dr. ). But, Dr. Steiner isn't as experienced as I had homes. I can't remember who we are seeing this next time but I'm sure knows (Charissa's mom) because she gave me the name. How did they explain the asymmetry that has? I don't think I'd let this upset you - just wait to see Dr. H. > > lil_angel_0910 angel@...> wrote:Hi everyone, > > I just need to blow off a little steam. We finally had the > appointment with the genetics doc today.(we only wanted to find out > if he had the thing with the 7th cromazone) And she had the gall to > tell me that my son wasn't RSS because he wasn't IUGR. Has anyone > else been told this? It took me 4 years to find out what was going > on with him. And now some doc is trying to tell me that nothing is > wrong with him and he's just little. Anyway we are coming to the > convention in july and i figure we'll know for sure after we see > Dr.H. I can't wait. well i better get goin. Hubby is gripin that > i'm spending too much time on the puter. > > Angel > mom to Donovan 9 and 4 1/2 (RSS) > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 29, 2003 Report Share Posted March 29, 2003 I Have pictures of him in the photo section. When was born he was 18 in long and weighed 7lbs 1oz. his brother was 23 1/4 inches long and weighed 8lbs. both were full term. Angel mom to Donovan 9 and 4 (RSS) > > > Hi everyone, > > > > > > I just need to blow off a little steam. We finally had the > > > appointment with the genetics doc today.(we only wanted to find > out > > > if he had the thing with the 7th cromazone) And she had the > gall > > to > > > tell me that my son wasn't RSS because he wasn't IUGR. Has > anyone > > > else been told this? It took me 4 years to find out what was > going > > > on with him. And now some doc is trying to tell me that nothing > is > > > wrong with him and he's just little. Anyway we are coming to the > > > convention in july and i figure we'll know for sure after we see > > > Dr.H. I can't wait. well i better get goin. Hubby is gripin > that > > > i'm spending too much time on the puter. > > > > > > Angel > > > mom to Donovan 9 and 4 1/2 (RSS) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 29, 2003 Report Share Posted March 29, 2003 I Have pictures of him in the photo section. When was born he was 18 in long and weighed 7lbs 1oz. his brother was 23 1/4 inches long and weighed 8lbs. both were full term. Angel mom to Donovan 9 and 4 (RSS) > > > Hi everyone, > > > > > > I just need to blow off a little steam. We finally had the > > > appointment with the genetics doc today.(we only wanted to find > out > > > if he had the thing with the 7th cromazone) And she had the > gall > > to > > > tell me that my son wasn't RSS because he wasn't IUGR. Has > anyone > > > else been told this? It took me 4 years to find out what was > going > > > on with him. And now some doc is trying to tell me that nothing > is > > > wrong with him and he's just little. Anyway we are coming to the > > > convention in july and i figure we'll know for sure after we see > > > Dr.H. I can't wait. well i better get goin. Hubby is gripin > that > > > i'm spending too much time on the puter. > > > > > > Angel > > > mom to Donovan 9 and 4 1/2 (RSS) Quote Link to comment Share on other sites More sharing options...
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