Guest guest Posted September 7, 2004 Report Share Posted September 7, 2004 Hello, My name is Kerri and I am trying to learn more about RSS. My daughter may have the syndrome, but it has not been diagnosed as of yet. She was born at 34 weeks via c section due to severe IUGR. She weighed 2 lbs 8 oz and was 13 1/4 inches long. She has low muscle tone gross and fine motor delays and is still very small. She is 25 lbs at 3 1/2 years. She is about 33 inches tall. She always been below 5th percentile on the growth charts. It took forever for her soft spot to fill in and she also has a hypoplastic left thumb and single creased palms. She was a terrible eater and still very picky. She has a very limited diet. She also has facial asymmetry. I just discoverd RSS on my own and am making an appointment to follow up with genetics... My question is, do any of these symptoms sound familiar? I have not seen hypoplastic thumbs or low set thumbs or single creased palms listed as symptoms... can she still have RSS with only a few symtoms. I just need an answer as to what is going on with my child. Thanks in advance for your help. Kerri, Mom to Shea (pronounced Shay), 3 1/2 years, and Colton 7 months birth weight 1 lb 15 oz(my other preemie due to pre eclampsia) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 7, 2004 Report Share Posted September 7, 2004 Thanks , The Magic foundation is sending me information today. My daughter also has a very prominate forehead and her bangs are set very far back. I have also been reading other posts about night sweating and waking up very grumpy. She does this at times... I am waiting to talk to the Ped as we speak. Thanks again, Kerri > > Hello, > > > > My name is Kerri and I am trying to learn more about RSS. My > > daughter may have the syndrome, but it has not been diagnosed as of > > yet. She was born at 34 weeks via c section due to severe IUGR. She > > weighed 2 lbs 8 oz and was 13 1/4 inches long. She has low muscle > > tone gross and fine motor delays and is still very small. She is 25 > > lbs at 3 1/2 years. She is about 33 inches tall. She always been > > below 5th percentile on the growth charts. It took forever for her > > soft spot to fill in and she also has a hypoplastic left thumb and > > single creased palms. She was a terrible eater and still very > > picky. She has a very limited diet. She also has facial asymmetry. > > I just discoverd RSS on my own and am making an appointment to follow > > up with genetics... My question is, do any of these symptoms sound > > familiar? I have not seen hypoplastic thumbs or low set thumbs or > > single creased palms listed as symptoms... can she still have RSS > > with only a few symtoms. I just need an answer as to what is going > > on with my child. > > > > Thanks in advance for your help. > > > > Kerri, Mom to Shea (pronounced Shay), 3 1/2 years, and Colton 7 > > months birth weight 1 lb 15 oz(my other preemie due to pre eclampsia) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 7, 2004 Report Share Posted September 7, 2004 hi kerri, if your child has rss you have found a woundreful place would you mind telling us where you live it could help us ie. see if any of us are near you and maybe doc sujestions not a whole lots of doctors know how to deal with these issues. cara mom to jacob Kerri wrote: Hello, My name is Kerri and I am trying to learn more about RSS. My daughter may have the syndrome, but it has not been diagnosed as of yet. She was born at 34 weeks via c section due to severe IUGR. She weighed 2 lbs 8 oz and was 13 1/4 inches long. She has low muscle tone gross and fine motor delays and is still very small. She is 25 lbs at 3 1/2 years. She is about 33 inches tall. She always been below 5th percentile on the growth charts. It took forever for her soft spot to fill in and she also has a hypoplastic left thumb and single creased palms. She was a terrible eater and still very picky. She has a very limited diet. She also has facial asymmetry. I just discoverd RSS on my own and am making an appointment to follow up with genetics... My question is, do any of these symptoms sound familiar? I have not seen hypoplastic thumbs or low set thumbs or single creased palms listed as symptoms... can she still have RSS with only a few symtoms. I just need an answer as to what is going on with my child. Thanks in advance for your help. Kerri, Mom to Shea (pronounced Shay), 3 1/2 years, and Colton 7 months birth weight 1 lb 15 oz(my other preemie due to pre eclampsia) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 7, 2004 Report Share Posted September 7, 2004 Hi Kerri, Welcome to our group. I hope we can answer your questions. First of all, yes all the symptoms you describe are very common to RSS kids. And your daughter does not need to have all the symptoms to have RSS. Many kids on this list, my son included, have only a few symptoms. My son is 7 and is a very very picky eater, besides not having much of an appetite. He is also below the 5th percentile. I think most parents on this list would jump for joy if their children were up to the 5th percentile. I know I would. However, with the help of growth hormone, my son is closing in on that. The single creased palms is called ( forgive my spelling) simian crease and it is common in people with growth disorders along with Pilonidal (sacral) dimples ( cute dimples just above th butt). I don't know about the thumbs. Hopefully, your doctor can answer many of your questions. I hope this helps. Ken M > Hello, > > My name is Kerri and I am trying to learn more about RSS. My > daughter may have the syndrome, but it has not been diagnosed as of > yet. She was born at 34 weeks via c section due to severe IUGR. She > weighed 2 lbs 8 oz and was 13 1/4 inches long. She has low muscle > tone gross and fine motor delays and is still very small. She is 25 > lbs at 3 1/2 years. She is about 33 inches tall. She always been > below 5th percentile on the growth charts. It took forever for her > soft spot to fill in and she also has a hypoplastic left thumb and > single creased palms. She was a terrible eater and still very > picky. She has a very limited diet. She also has facial asymmetry. > I just discoverd RSS on my own and am making an appointment to follow > up with genetics... My question is, do any of these symptoms sound > familiar? I have not seen hypoplastic thumbs or low set thumbs or > single creased palms listed as symptoms... can she still have RSS > with only a few symtoms. I just need an answer as to what is going > on with my child. > > Thanks in advance for your help. > > Kerri, Mom to Shea (pronounced Shay), 3 1/2 years, and Colton 7 > months birth weight 1 lb 15 oz(my other preemie due to pre eclampsia) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 7, 2004 Report Share Posted September 7, 2004 Hi Cara, We live in SE Michigan. Thanks for your response, any information would be helpful. Kerri > Hello, > > My name is Kerri and I am trying to learn more about RSS. My > daughter may have the syndrome, but it has not been diagnosed as of > yet. She was born at 34 weeks via c section due to severe IUGR. She > weighed 2 lbs 8 oz and was 13 1/4 inches long. She has low muscle > tone gross and fine motor delays and is still very small. She is 25 > lbs at 3 1/2 years. She is about 33 inches tall. She always been > below 5th percentile on the growth charts. It took forever for her > soft spot to fill in and she also has a hypoplastic left thumb and > single creased palms. She was a terrible eater and still very > picky. She has a very limited diet. She also has facial asymmetry. > I just discoverd RSS on my own and am making an appointment to follow > up with genetics... My question is, do any of these symptoms sound > familiar? I have not seen hypoplastic thumbs or low set thumbs or > single creased palms listed as symptoms... can she still have RSS > with only a few symtoms. I just need an answer as to what is going > on with my child. > > Thanks in advance for your help. > > Kerri, Mom to Shea (pronounced Shay), 3 1/2 years, and Colton 7 > months birth weight 1 lb 15 oz(my other preemie due to pre eclampsia) > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 7, 2004 Report Share Posted September 7, 2004 ---> Kerri, There has only been one other child here who had the thumb symptom you mentioned, but I think a few of us have kids with the single crease in the palm. I think that has something to do with low muscle tone. Good luck on finding answers and check out the photos. Cindy >> > > __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 7, 2004 Report Share Posted September 7, 2004 Hi kerri My name is kim and i'm an rss adult age 26. I'm 4' 3 " tall( never had growth hormone treatment) I live in Scotland in the UK. I have a dimple above my butt, one above/ on the back of my right shoulder blade and one on my left thigh. I also have the curved pinkies ( very curved on the right hand. I had eating and weight issues as a child and frequent ear/ hearing problems which meant having several sets of tubes inserted. Cant think of any thing else for now. Feel free to email me of im me on the yahoo messenger service. Welcome to the list serve kmerrith wrote: Hi Kerri, Welcome to our group. I hope we can answer your questions. First of all, yes all the symptoms you describe are very common to RSS kids. And your daughter does not need to have all the symptoms to have RSS. Many kids on this list, my son included, have only a few symptoms. My son is 7 and is a very very picky eater, besides not having much of an appetite. He is also below the 5th percentile. I think most parents on this list would jump for joy if their children were up to the 5th percentile. I know I would. However, with the help of growth hormone, my son is closing in on that. The single creased palms is called ( forgive my spelling) simian crease and it is common in people with growth disorders along with Pilonidal (sacral) dimples ( cute dimples just above th butt). I don't know about the thumbs. Hopefully, your doctor can answer many of your questions. I hope this helps. Ken M > Hello, > > My name is Kerri and I am trying to learn more about RSS. My > daughter may have the syndrome, but it has not been diagnosed as of > yet. She was born at 34 weeks via c section due to severe IUGR. She > weighed 2 lbs 8 oz and was 13 1/4 inches long. She has low muscle > tone gross and fine motor delays and is still very small. She is 25 > lbs at 3 1/2 years. She is about 33 inches tall. She always been > below 5th percentile on the growth charts. It took forever for her > soft spot to fill in and she also has a hypoplastic left thumb and > single creased palms. She was a terrible eater and still very > picky. She has a very limited diet. She also has facial asymmetry. > I just discoverd RSS on my own and am making an appointment to follow > up with genetics... My question is, do any of these symptoms sound > familiar? I have not seen hypoplastic thumbs or low set thumbs or > single creased palms listed as symptoms... can she still have RSS > with only a few symtoms. I just need an answer as to what is going > on with my child. > > Thanks in advance for your help. > > Kerri, Mom to Shea (pronounced Shay), 3 1/2 years, and Colton 7 > months birth weight 1 lb 15 oz(my other preemie due to pre eclampsia) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 7, 2004 Report Share Posted September 7, 2004 Hi Kim, Thanks for the information... It is good to hear from people who really know what is going on... I will email you or post later I am sure with more questions. > > Hello, > > > > My name is Kerri and I am trying to learn more about RSS. My > > daughter may have the syndrome, but it has not been diagnosed as of > > yet. She was born at 34 weeks via c section due to severe IUGR. > She > > weighed 2 lbs 8 oz and was 13 1/4 inches long. She has low muscle > > tone gross and fine motor delays and is still very small. She is > 25 > > lbs at 3 1/2 years. She is about 33 inches tall. She always been > > below 5th percentile on the growth charts. It took forever for her > > soft spot to fill in and she also has a hypoplastic left thumb and > > single creased palms. She was a terrible eater and still very > > picky. She has a very limited diet. She also has facial > asymmetry. > > I just discoverd RSS on my own and am making an appointment to > follow > > up with genetics... My question is, do any of these symptoms sound > > familiar? I have not seen hypoplastic thumbs or low set thumbs or > > single creased palms listed as symptoms... can she still have RSS > > with only a few symtoms. I just need an answer as to what is going > > on with my child. > > > > Thanks in advance for your help. > > > > Kerri, Mom to Shea (pronounced Shay), 3 1/2 years, and Colton 7 > > months birth weight 1 lb 15 oz(my other preemie due to pre > eclampsia) > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 7, 2004 Report Share Posted September 7, 2004 Hi Kerri, welcome to the group! My name is Leah and my 4.75 year old daughter, Olivia, has RSS. She was born at 29/30 weeks weighing 1 lb. 11 oz. and was 13 inches long, she also had a 2 vessel cord. After only an 8 week NICU stay she came home weighing 3 lb. 6 oz. Olivia had very low muscle tone also and sat up at 12/13 months, walked at 25 months etc. Her fine motor skills were very delayed too. We only have PT now as she's caught up with the OT and Speech. Olivia has a very small appetite and we have a horrible time getting weight on her, actually she hasn't gained anything in almost 2 years, she hasn't been tube fed since she was in the NICU. Olivia seems to be smaller than most of the RSS kids her age but she does have 2 types of dwarfism as well as very short parents! All in all, Olivia is very happy and outgoing, loves life and getting into EVERYTHING!! lol Can't wait to get to know you better! Leah, mom to 9 years and Olivia, 4.75 years, 18lbs, 33 " , RSS, OI, tons of meds > Hello, > > My name is Kerri and I am trying to learn more about RSS. My > daughter may have the syndrome, but it has not been diagnosed as of > yet. She was born at 34 weeks via c section due to severe IUGR. She > weighed 2 lbs 8 oz and was 13 1/4 inches long. She has low muscle > tone gross and fine motor delays and is still very small. She is 25 > lbs at 3 1/2 years. She is about 33 inches tall. She always been > below 5th percentile on the growth charts. It took forever for her > soft spot to fill in and she also has a hypoplastic left thumb and > single creased palms. She was a terrible eater and still very > picky. She has a very limited diet. She also has facial asymmetry. > I just discoverd RSS on my own and am making an appointment to follow > up with genetics... My question is, do any of these symptoms sound > familiar? I have not seen hypoplastic thumbs or low set thumbs or > single creased palms listed as symptoms... can she still have RSS > with only a few symtoms. I just need an answer as to what is going > on with my child. > > Thanks in advance for your help. > > Kerri, Mom to Shea (pronounced Shay), 3 1/2 years, and Colton 7 > months birth weight 1 lb 15 oz(my other preemie due to pre eclampsia) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 8, 2004 Report Share Posted September 8, 2004 hi kerri!! welcome to this great group!!!my son is also 3 1/2 and weighs 24lbs 4oz and is 34 3/4 " . there is no definite test for rss. but you should really see and endo (if you dont already). fell free to email me at jlcals2003@ yahoo.com (no space after @). good luck!!! jodie c. (one of 4 jodis on the list) (nicholas-6 nonrss, christopher-3 1/2 rss 24lbs 4oz 34 3/4 " periactin, ght (on hold until oct), ADHD (possible), assmentry (left side 1cm), johnathon-14months nonrss) -- In RSS-Support , " Kerri " <kerrigoff@s...> wrote: > Hello, > > My name is Kerri and I am trying to learn more about RSS. My > daughter may have the syndrome, but it has not been diagnosed as of > yet. She was born at 34 weeks via c section due to severe IUGR. She > weighed 2 lbs 8 oz and was 13 1/4 inches long. She has low muscle > tone gross and fine motor delays and is still very small. She is 25 > lbs at 3 1/2 years. She is about 33 inches tall. She always been > below 5th percentile on the growth charts. It took forever for her > soft spot to fill in and she also has a hypoplastic left thumb and > single creased palms. She was a terrible eater and still very > picky. She has a very limited diet. She also has facial asymmetry. > I just discoverd RSS on my own and am making an appointment to follow > up with genetics... My question is, do any of these symptoms sound > familiar? I have not seen hypoplastic thumbs or low set thumbs or > single creased palms listed as symptoms... can she still have RSS > with only a few symtoms. I just need an answer as to what is going > on with my child. > > Thanks in advance for your help. > > Kerri, Mom to Shea (pronounced Shay), 3 1/2 years, and Colton 7 > months birth weight 1 lb 15 oz(my other preemie due to pre eclampsia) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 8, 2004 Report Share Posted September 8, 2004 Kerri - welcome to the group. My name is Jane, my daughter - 1 year today - is diagnosed SGA ?RSS. She was born at 40 weeks and 4# 10.3oz. Interesting you mention your daughter with her thumbs as has the same thing - low placed and hypoplastic. I don't really know if this is a feature or not but interesting that both our daughters have this. Other features has: bossed forehead, assymetry - leg, buttock, ears - IUGR, low set ears, failure to thrive. has a good appetite in comparison to many of these children (she does not require a feeding tube). Current stats for are: approx 14#, 25 " . Best of luck in your search - I know the frustrations! Jane, mom to - SGA. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 9, 2004 Report Share Posted September 9, 2004 Hi Jane, Not sure if you remember me - we took a picture together because I thought looked so much like my Emerence when she was younger. Happy Birthday to her! Funny thing, I thought only Emerence had asymmetry of the buttock (she has left buttock and leg!) I thought that was weird to have asymmetric butt cheeks! , 4.5, Emerence almost 19 mo, 18 lb 1 oz, 29ish " > > Kerri - welcome to the group. My name is Jane, my daughter - 1 year today - is diagnosed SGA ?RSS. She was born at 40 weeks and 4# 10.3oz. Interesting you mention your daughter with her thumbs as has the same thing - low placed and hypoplastic. I don't really know if this is a feature or not but interesting that both our daughters have this. Other features has: bossed forehead, assymetry - leg, buttock, ears - IUGR, low set ears, failure to thrive. has a good appetite in comparison to many of these children (she does not require a feeding tube). Current stats for are: approx 14#, 25 " . Best of luck in your search - I know the frustrations! Jane, mom to - SGA. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 10, 2004 Report Share Posted September 10, 2004 Hi Kerri, My son (Storm age 9 yrs) has the single crease palm, but only on one hand. Just thought I would share, I think there are several that do. It used to be listed under not as common a characteristic. Have you checked out the Magic foundation web sight. It is great and lists every possible thing. I don't think any one child has all the possible signs of RSS, they all have a few. Check it out. It also says the ones that are definitely a part of RSS and the ones that are more likely, etc. it is www.magicfoundation.org it is a wonderful organization and has helped me save my sanity and help my son grow!!! I hope you find the answers you need! Carmen, mom to Storm 9, RSS, 53 pounds and 48 inches and Paisley NOTRSS and 11.5 Quote Link to comment Share on other sites More sharing options...
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