Guest guest Posted July 19, 2004 Report Share Posted July 19, 2004 I know exactly how you feel, I could have written your post myself! Our genetisist had been thinking RSS from 10 months old until just last month, 3.5yrs old. He now doesn't think that she has RSS. It seems odd, but we're comfortable with RSS, we've gotten to know it if you know what I mean. However I'm prepared to hear " Not RSS " for the main reason that her head, although big for her body, is not normal size for her age, it's too small. As I understand it this is one thing that all RSS kids have. She does have many other factors that could be the cause of a smaller head though. I guess we'll just have to wait 3 more days to know for sure!! Hope to meet you soon, Leah, mom to 9yrs and Olivia 4.5yrs, RSS/SGA??, OI, 19.5lbs, 33 " , lactulose, senokot, zantac, tums > Hi, > > Now that that the famous Dr. Harbison is going to see my daughter and > say yea/nay this week I'm getting nervous. At this point I just > want a diagnosis but am afraid she might say Emerence doesn't have > RSS (which means we will keep searching). People talk about a " look " > and her geneticist doesn't think she looks " RSS " but has some > features of RSS. > > I just wanted to say thanks to all who have been so helpful so far! > > , 4.5 non RSS, Emerence 17 mo. 16 lb 11 oz 26 " maybe? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 19, 2004 Report Share Posted July 19, 2004 -- I thought the same way to about RSS or not, I understood from the Dr. and research before the convention and he has 25 charecteristics and well when I arrived at the convention he just didn't quite have the look, he did look the same as some but mild, she gave me the RSS diagnosis but ?? I am comfortasble with this but still wonder if it is more with all the other issues he has!! Good luck and don't worry, God has them all here for a reason!!! - In RSS- Support , " Leah " <littlegemf@h...> wrote: > > > I know exactly how you feel, I could have written your post myself! > Our genetisist had been thinking RSS from 10 months old until just > last month, 3.5yrs old. He now doesn't think that she has RSS. It > seems odd, but we're comfortable with RSS, we've gotten to know it > if you know what I mean. However I'm prepared to hear " Not RSS " for > the main reason that her head, although big for her body, is not > normal size for her age, it's too small. As I understand it this is > one thing that all RSS kids have. She does have many other factors > that could be the cause of a smaller head though. I guess we'll > just have to wait 3 more days to know for sure!! > Hope to meet you soon, > > Leah, mom to 9yrs and Olivia 4.5yrs, RSS/SGA??, OI, 19.5lbs, > 33 " , lactulose, senokot, zantac, tums > > > > > Hi, > > > > Now that that the famous Dr. Harbison is going to see my daughter > and > > say yea/nay this week I'm getting nervous. At this point I just > > want a diagnosis but am afraid she might say Emerence doesn't have > > RSS (which means we will keep searching). People talk about > a " look " > > and her geneticist doesn't think she looks " RSS " but has some > > features of RSS. > > > > I just wanted to say thanks to all who have been so helpful so > far! > > > > , 4.5 non RSS, Emerence 17 mo. 16 lb 11 oz 26 " maybe? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 19, 2004 Report Share Posted July 19, 2004 , I wanted to reassure you that you will not be going through any of this alone. Many of us are working with Dr. H this week to check in people and talk to them before and after the appointments. No matter what Dr. H says you will have RSS and SGA folks to talk with after the appointment and many other families who are there who have gotten positive and negative diagnosis from her. Whether she thinks he is RSS/ SGA or something else she will give you direction for where to go from here. See you there. Pattie Warren (Jon(9) RSS, (5) spoiled brat) > Hi, > > Now that that the famous Dr. Harbison is going to see my daughter and > say yea/nay this week I'm getting nervous. At this point I just > want a diagnosis but am afraid she might say Emerence doesn't have > RSS (which means we will keep searching). People talk about a " look " > and her geneticist doesn't think she looks " RSS " but has some > features of RSS. > > I just wanted to say thanks to all who have been so helpful so far! > > , 4.5 non RSS, Emerence 17 mo. 16 lb 11 oz 26 " maybe? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 20, 2004 Report Share Posted July 20, 2004 <<People talk about a " look " and her geneticist doesn't think she looks " RSS " but has some features of RSS. >> That's Liam too.... I'm also getting nervous Mom to Liam (3 1/2 years old 34 3/4 " 27 lbs SGA / possible RSS, Hypothyriod, Epilepsy.) Started GHT 5/18/04 and Jed (11 years old) Tourettes, CAPD,SVT. SW Orlando FL **Push for Bush 'cause Kerry is scary** Check out my group: http://health.groups.yahoo.com/group/ToddlerswEpilepsy/?yguid=174302728 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 20, 2004 Report Share Posted July 20, 2004 Hi , Last year I went to the convention with my husband and my then 4 year old son Max a.k.a. Maxi. Dr Harbison said he did NOT have RSS or SGA but did present with some form of short stature and needed further testing (none of which his doctors here will order). While this was upsetting because I didn't know if I belonged to this group anymore (and they were very supportive), and because I still didn't have a diagnosis beyond short stature, at no time did I feel like other people didn't want me there or that I didn't belong to this group. This group and the RSS group at the convention will be there, REGARDLESS of the diagnosis or lack there of. It is also worth noting that Max saw 3 other doctors while at the convention and a dentist. While none of them could diagnose him, other than to admit he was short and had midline anomalies, it did give us some avenues to explore. They all agreed he needed growth hormone, something we have yet to convince the docs here of. We are now on our third enocrinologist. Anyway, I have always known that whenever I needed them, Magic has been there, even if I still don't have the answers. This group has always been welcoming, and as many of his issues are that od RSS/SGA kids, this is the group I choose to affiliate with. Hugs and good luck, AmyMarie, Mom to Max 5 1/2 years 33 pounds 39 inches and still getting up to eat at night! > Hi, > > Now that that the famous Dr. Harbison is going to see my daughter and > say yea/nay this week I'm getting nervous. At this point I just > want a diagnosis but am afraid she might say Emerence doesn't have > RSS (which means we will keep searching). People talk about a " look " > and her geneticist doesn't think she looks " RSS " but has some > features of RSS. > > I just wanted to say thanks to all who have been so helpful so far! > > , 4.5 non RSS, Emerence 17 mo. 16 lb 11 oz 26 " maybe? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 20, 2004 Report Share Posted July 20, 2004 Amymarie!!:-) J here. I talked with you at the convention last year. Pattie Warren and I were just talking about how we had not seen any posts from you for a long long time... It is funny on how when you say something like that you hear from the person in question. I am glad to see you are still around here. You are such a wonderful person and I am sorry you are having difficulty getting a Dx for Maxi. Take Care, J > > Reply-To: RSS-Support > Date: Tue, 20 Jul 2004 21:54:31 -0000 > To: RSS-Support > Subject: Re: diagnosis? > > Hi , > > Last year I went to the convention with my husband and my then 4 year > old son Max a.k.a. Maxi. Dr Harbison said he did NOT have RSS or SGA > but did present with some form of short stature and needed further > testing (none of which his doctors here will order). While this was > upsetting because I didn't know if I belonged to this group anymore > (and they were very supportive), and because I still didn't have a > diagnosis beyond short stature, at no time did I feel like other > people didn't want me there or that I didn't belong to this group. > This group and the RSS group at the convention will be there, > REGARDLESS of the diagnosis or lack there of. It is also worth noting > that Max saw 3 other doctors while at the convention and a dentist. > While none of them could diagnose him, other than to admit he was > short and had midline anomalies, it did give us some avenues to > explore. They all agreed he needed growth hormone, something we have > yet to convince the docs here of. We are now on our third > enocrinologist. Anyway, I have always known that whenever I needed > them, Magic has been there, even if I still don't have the answers. > This group has always been welcoming, and as many of his issues are > that od RSS/SGA kids, this is the group I choose to affiliate with. > > > Hugs and good luck, > > AmyMarie, Mom to Max 5 1/2 years 33 pounds 39 inches and still getting > up to eat at night! > > >> Hi, >> >> Now that that the famous Dr. Harbison is going to see my daughter and >> say yea/nay this week I'm getting nervous. At this point I just >> want a diagnosis but am afraid she might say Emerence doesn't have >> RSS (which means we will keep searching). People talk about a " look " >> and her geneticist doesn't think she looks " RSS " but has some >> features of RSS. >> >> I just wanted to say thanks to all who have been so helpful so far! >> >> , 4.5 non RSS, Emerence 17 mo. 16 lb 11 oz 26 " maybe? > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 20, 2004 Report Share Posted July 20, 2004 thanks to everyone for your comments and to my " partners in stomach knots " - see you all at the conf! > > Hi, > > > > Now that that the famous Dr. Harbison is going to see my daughter and > > say yea/nay this week I'm getting nervous. At this point I just > > want a diagnosis but am afraid she might say Emerence doesn't have > > RSS (which means we will keep searching). People talk about a " look " > > and her geneticist doesn't think she looks " RSS " but has some > > features of RSS. > > > > I just wanted to say thanks to all who have been so helpful so far! > > > > , 4.5 non RSS, Emerence 17 mo. 16 lb 11 oz 26 " maybe? Quote Link to comment Share on other sites More sharing options...
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