Guest guest Posted March 4, 2000 Report Share Posted March 4, 2000 Hi Kathleen, I have a question for you. I somewhat remember when you went to Dr. H for Abbys consult, but can not for the life of me remember why she feels that Abby is not RSS. My daughter is close to Abby in age, size, ect. Allie is going to be 16mo tomorrow, weighs 17lb,and is 251/2 " . I am just trying to figure out how our daughters could be so close and both not have rss. Does she give you any other advise as to her size etc. I read she was sick and hope not to bother you, but I just keep thinking about it. My daughter is very small but has had very significant problems outside of the rss diagnosis. She does have reflux but has had to have a few surgeries on her intestines. At 10 months she weighed 10lb and now at 16 months weighs 18lb. We realy dont have to work to get weight anymore, but she just doesnt seem to want to grow much in length even with growth hormone. She is gh deficient so sometimes I wonder if she really has rss or just ghd, but Dr. H says she does????? thanks for any information.... jim father to little allie --- Kathleen wrote: > Don't be silly! I'm happy to do it. I can add the > weights if you find them > out. I hope you get some answers about Trey. > Remember that its fun to > compare notes on how similar our kids look but that > none of us can really > say whether he " looks " RSS with any certainty. > Kathleen [Mom to Abby--16 mos, 13 lbs., 26 1/4 in.- > Close but not RSS ] > > >> >>Date: Thu, 2 Mar 2000 12:31:34 -0800 > >> >> > >> >>, > >> >>Got your pics in the mail. I can't decide > which ones to post! They're > >>all > >> >>cute! You didn't write on the back of the > wallets how old he was in > >> >>them-let me know & I'll include that in the > name of the file when I > post > >> >>them. Should I post them all and if the > files get too big, we can > >> >>delete some? > >> >>Kathleen [Mom to Abby--16 mos, 13 lbs., 26 1/4 > in.- Close but not RSS > > >>] > >> > > >> > >______________________________________________________ > >> >Get Your Private, Free Email at > http://www.hotmail.com > >> > > >> > > >> > >------------------------------------------------------------------------ > >> >GET A NEXTCARD VISA, in 30 seconds! Get rates > >> >as low as 0.0% Intro APR and no hidden fees. > >> >Apply NOW! > >> > >http://click./1/975/0/_/229381/_/952087679/ > >> > >------------------------------------------------------------------------ > >> > > >> > > >> > > >> > > > >______________________________________________________ > >Get Your Private, Free Email at > http://www.hotmail.com > > > > > >------------------------------------------------------------------------ > >GET A NEXTCARD VISA, in 30 seconds! Get rates as > low as 0.0% > >Intro or 9.9% Fixed APR and no hidden fees. Apply > NOW! > >http://click./1/937/0/_/229381/_/952191558/ > >------------------------------------------------------------------------ > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 6, 2000 Report Share Posted March 6, 2000 Jim, Ann, & everyone, Well, to answer your question without making this message so long that you won't want to read it, I'll be brief. I thought from going down Magic's list and from comparing notes with everyone on the list that Abby had RSS for sure. I'd read think upper lip, IUGR, small chin, etc and she fit almost everything. Also she looked to me like some of the posted pictures. What I learned is that you have to fit the diagnosis to the child not the child to the diagnosis. I was certain that is was RSS as was her ST and her GI. Also I think I " wanted " her to have RSS because compared to some of the other syndromes, it is relatively okay to handle. When we saw Dr. H, I realized that in fact Abby doesn't look RSS at all. Yes, she has a thin upper lip but so do a lot of people and it is not at all an RSS mouth. By triangular shaped head, they mean dramatically so. Same with large head and prominent ears. She is small like RSS but her in uteruo growth didn't fit with the way an RSS fetus grows either. Basically, though it seemed so at first, Abby doesn't have many RSS traits. I don't think the brief list by Magic is meant to be used to make a diagnosis-there are a lot more details about each feature and really, only someone who knows what they are talking about can diagnosis it-like Dr. H. Even some geneticists, especially those who don't like saying " I don't know " will diagnose RSS when its close but truly isn't. Apparently there is some controversy about this in the medical community so much so that I found RSS in a medical book and it cautioned about the many times it is mis-diagnosed. There's no point in going with a diagnosis that isn't right. So anyway, we're not sure why Abby is so small. I think now that there are some genetic growth disorders that haven't been discovered or named yet and that Abby may fall into one. We will be seeing a geneticist in Utah when Abby is well and maybe he'll have some ideas. If not, that's okay too. I'd love to know what to expect and what she may need but I'm covering all bases anyway (ST, OT, nutritionist, etc.) so I hope things will be okay. One reason I'd like to have some answers is if we'd ever try to have another child since we lost out first and she grew much like Abby in uteruo. Jim-Dr. H said that yes,Allie is RSS? Abby isn't GHD. Can I ask what surgeries Allie has had on her intestine? We may be doing a colonscopy and endoscopy soon and I wonder if there is something going on in there hindering her growth. She just had an elevated A1 & AT stool test so the GI wants to do them but I see him tomorrow and will get more details. Kathleen [Mom to Abby--16 mos, 13 lbs.1 oz, 26 1/4 in.- Close but not RSS ] >> >> >>Date: Thu, 2 Mar 2000 12:31:34 -0800 >> >> >> >> >> >>, >> >> >>Got your pics in the mail. I can't decide >> which ones to post! They're >> >>all >> >> >>cute! You didn't write on the back of the >> wallets how old he was in >> >> >>them-let me know & I'll include that in the >> name of the file when I >> post >> >> >>them. Should I post them all and if the >> files get too big, we can >> >> >>delete some? >> >> >>Kathleen [Mom to Abby--16 mos, 13 lbs., 26 1/4 >> in.- Close but not RSS >> >> >>] >> >> > >> >> >> >>______________________________________________________ >> >> >Get Your Private, Free Email at >> http://www.hotmail.com >> >> > >> >> > >> >> >> >>------------------------------------------------------------------------ >> >> >GET A NEXTCARD VISA, in 30 seconds! Get rates >> >> >as low as 0.0% Intro APR and no hidden fees. >> >> >Apply NOW! >> >> >> >>http://click./1/975/0/_/229381/_/952087679/ >> >> >> >>------------------------------------------------------------------------ >> >> > >> >> > >> >> > >> >> >> > >> >>______________________________________________________ >> >Get Your Private, Free Email at >> http://www.hotmail.com >> > >> > >> >>------------------------------------------------------------------------ >> >GET A NEXTCARD VISA, in 30 seconds! Get rates as >> low as 0.0% >> >Intro or 9.9% Fixed APR and no hidden fees. Apply >> NOW! >> >>http://click./1/937/0/_/229381/_/952191558/ >> >>------------------------------------------------------------------------ >> > >> > >> > >> >> > >------------------------------------------------------------------------ >GET A NEXTCARD VISA, in 30 seconds! Get rates as low as 0.0% >Intro or 9.9% Fixed APR and no hidden fees. Apply NOW! >http://click./1/937/0/_/229381/_/952195856/ >------------------------------------------------------------------------ > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 6, 2000 Report Share Posted March 6, 2000 Kathleen, Thanks! Grandma Ann Quote Link to comment Share on other sites More sharing options...
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