Guest guest Posted November 16, 2005 Report Share Posted November 16, 2005 Hi Jeanie! Been there - now I can help by saying don't panic - we are here to help! My 33 month old daughter is SGA (small for gestational age) with many many characteristics of RSS excepte the triangular face. Either way, treatment is the same. We are from MA...where are you from? There is probably a family near you too...Let us know about your child...EMerence was born IUGR (intrauterine growth restriction) via emergency c section at almost 37 wks - 4 lb 6 oz 16.25 and she was a moose compared to most of the kids here!! She is now the queen bee/self designated empress of the world (complete with hands on hips, foot stamping and attitude). She is smart and funny and short. She will be 3 in February and we are hoping to start growth hormones by then. Plan ahead and try to come to Chicago next summer - best investment in your child's future you will ever make! , mom to almost 6 and Emerence 33 months 22 lbs 32 " > > Jeanie, > > I am not doing the official greeting since that is Sheldon's job > these days, but I just could not go without responding to your > email. Look! You DID do something right! Your message came > through! It probably had to be approved by Ken before you could > start posting right away. He's the moderator and he rules with an > iron fist. > > I am one of several Jodis on this listserve, but only two of us > spell Jodi correctly. I have a 17 year old son, Maxwell, who has > RSS and a 20 year old daughter who is adding more gray to my head > than I care to admit. She does not have RSS, however. If you have > not already noticed, I post a lot. I do my best to help whoever I > can. > > That being said, tell us more about your son. I'm sure you are > partly devestated and partly relieved to have a diagnosis. This > group of people is the best resource and the best source of support. > There is also the MAGIC Foundation who sponsors a yearly convention > in Chicago. Check out their website at www.magicfoundation.org. > > Once you tell us more, we can be more specific with information to > share with you. HOWEVER if you have not been warned about the > possibility of nighttime hypoglycemia, consider this to be it. Many > of our kids have that and their parents have not been told. There > are a couple of ways to check and simple things to ensure it does > not happen. But I don't want to overwhelm you right now. > > Please also tell us where you live. Many of us take our kids to see > Dr. Madeleine Harbison in NYC. She is the guru of RSS in the US. > There are only two other doctors in the world who know as much and > they are in Europe. Dr. H, as we call her, has over 200 RSS > patients and has come to our rescue many a time. > > Again, welcome and I look forward to hearing from you soon. > > Jodi Z > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 17, 2005 Report Share Posted November 17, 2005 Jeanie - Welcome! We are so glad you are here. I see you have met a few people and you will meet many many more here. There are SO many wonderful people here and I want you to know that you can always feel comfortable to chat, vent, cry, share, and ask lot's of questions whenever you need to. We are here for you! Please keep us posted. I so much look forward to hearing more from you. - H ( - there are a few of us as well <grin>) > > Jeanie, > > I am not doing the official greeting since that is Sheldon's job > these days, but I just could not go without responding to your > email. Look! You DID do something right! Your message came > through! It probably had to be approved by Ken before you could > start posting right away. He's the moderator and he rules with an > iron fist. > > I am one of several Jodis on this listserve, but only two of us > spell Jodi correctly. I have a 17 year old son, Maxwell, who has > RSS and a 20 year old daughter who is adding more gray to my head > than I care to admit. She does not have RSS, however. If you have > not already noticed, I post a lot. I do my best to help whoever I > can. > > That being said, tell us more about your son. I'm sure you are > partly devestated and partly relieved to have a diagnosis. This > group of people is the best resource and the best source of support. > There is also the MAGIC Foundation who sponsors a yearly convention > in Chicago. Check out their website at www.magicfoundation.org. > > Once you tell us more, we can be more specific with information to > share with you. HOWEVER if you have not been warned about the > possibility of nighttime hypoglycemia, consider this to be it. Many > of our kids have that and their parents have not been told. There > are a couple of ways to check and simple things to ensure it does > not happen. But I don't want to overwhelm you right now. > > Please also tell us where you live. Many of us take our kids to see > Dr. Madeleine Harbison in NYC. She is the guru of RSS in the US. > There are only two other doctors in the world who know as much and > they are in Europe. Dr. H, as we call her, has over 200 RSS > patients and has come to our rescue many a time. > > Again, welcome and I look forward to hearing from you soon. > > Jodi Z > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 17, 2005 Report Share Posted November 17, 2005 Hi Jeanie, We live in Westchester County NY. We also have a house in the Poconos (Lord's Valley). My son has RSS. He is now 5 3/4 year of age. He, like some other RSS children, cannot eat enough by himself to grow so he has a portable feeding pump. He is on growth hormones and is doing very well. He gets ST, PT and OT in school. He is very bright and funny. He loves people. We see Dr H every quarter. Judith, Steve, (RSS) and (non RSS) 5 3/4 year old twins Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 17, 2005 Report Share Posted November 17, 2005 Where is Westchester County? Is that closer to NYC? Sidny27 wrote:Hi Jeanie, We live in Westchester County NY. We also have a house in the Poconos (Lord's Valley). My son has RSS. He is now 5 3/4 year of age. He, like some other RSS children, cannot eat enough by himself to grow so he has a portable feeding pump. He is on growth hormones and is doing very well. He gets ST, PT and OT in school. He is very bright and funny. He loves people. We see Dr H every quarter. Judith, Steve, (RSS) and (non RSS) 5 3/4 year old twins Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 17, 2005 Report Share Posted November 17, 2005 Westchester County is the first county north of NYC. It takes me about 2 hours to get to Albany. My sister-in-law attend SUNY Buffalo (Amherst campus). It takes us 7 hours to get there. Judith Hi Jeanie, > > We live in Westchester County NY. We also have a house in the Poconos > (Lord's Valley). My son has RSS. He is now 5 3/4 year of age. > He, like some other RSS children, cannot eat enough by himself to grow > so he has a portable feeding pump. He is on growth hormones and is > doing very well. He gets ST, PT and OT in school. He is very bright > and funny. He loves people. > > We see Dr H every quarter. > > Judith, Steve, (RSS) and (non RSS) 5 3/4 year old twins > > > > > > > > Quote Link to comment Share on other sites More sharing options...
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