Guest guest Posted January 4, 2006 Report Share Posted January 4, 2006 Hi Jayne Welcome to this site. I have 2 children Liam has RSS he is 4 and Cameron who is 7. We live in Australia, and this site has provided much support, information and many answers. Lots of debates as well. Please ask lots of questions, and tell us lots about Lily. Sometimes when you are new it is good to pick a few children who might be about Lilys age or who seem similar to Lily and do a search of the archives, it will give you a pretty good history of those kids and how things have been dealt with. Also, just ask, someone will always answer. Have you seen the Magic foundation website or joined. A great place to find information. ope to hear lots about Lily soon Jody(mum to Liam 4 RSS on growth hormone, losec, gtube, and Cameron who should have a syndrome called PS2, since santa gave it to him) > > hello there, i dont really know how this all works but here goes.Our > daughter,Lily is 14months old and has RSS.She has been diagnosed only > a few months and we are trying to find out as much as possible about > RSS,growth hormone,what to expect in the future and basically as many > ways there is possible to help her.I would love to hear from anyone > who can help. Jayne xxx > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 4, 2006 Report Share Posted January 4, 2006 Jayne, Where are you from?? Welcome to the group Chrissy Mom to Louis 6 Madison 4 RSS Shane 2 1 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 4, 2006 Report Share Posted January 4, 2006 Hi Jayne, Glad you found the group! There is so much information and help on this site it is unbelievable! So many friends that are so wonderful! There are alot of issues with RSS, but not all affect every child ... some are mild and some have a lot to deal with. My son Noah is 3 years old, weighs just over 20 lbs and is 32.5 " tall, he doesn't seem to have a lot of the " gut " problems but still doesn't eat like he should. We started a drug called Periactin to help stimilate his appetite at the end of November and so far so good. Noah has been tested and is Growth Hormone deficient, which is rare for RSS children. Most are not deficient but need the growth hormones just the same. We start growth hormone therapy at the end of January. Looking forward to hearing more from you ... all about Lily, where you live etc etc! Dawna Matt 13, 11, 8 and Noah 3 RSS > > hello there, i dont really know how this all works but here goes.Our > daughter,Lily is 14months old and has RSS.She has been diagnosed only > a few months and we are trying to find out as much as possible about > RSS,growth hormone,what to expect in the future and basically as many > ways there is possible to help her.I would love to hear from anyone > who can help. Jayne xxx > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 4, 2006 Report Share Posted January 4, 2006 hi jayne!! i see you have gotten alot of responses but i wanted to jump on the welcome wagon!! this is such a great place for support and info!! ((HUGS)) i have a 5yr old son, christopher who is rss. jodie c (one of 4 jodis on the list!!!) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 4, 2006 Report Share Posted January 4, 2006 > > hello there, i dont really know how this all works but here goes.Our > daughter,Lily is 14months old and has RSS.She has been diagnosed only > a few months and we are trying to find out as much as possible about > RSS,growth hormone,what to expect in the future and basically as many > ways there is possible to help her.I would love to hear from anyone > who can help. Jayne xxx > Dear Jayne, I'm glad you finally have a diagnosis for Lily so that you can go forward with the information and support you will need. This is a most wonderful support network that will help you over your hurdles. There is so much involved in the syndrome that you'd have to read a very thick book to digest it all. Each child is a little bit different, with different issues to face. And depending upon age, the issues change. You can't take it all in at once, so the best thing to do is to ask a question and slowly abosrb the answers. Your questions will arise as Lily has difficulties. Don't be afraid to ask the same question many times until you feel comfortable. That's what we're here for. There are some very knowledgeable persons who monitor this group very closely. You've come to the right place. Dianne - Ian's grandmother Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 6, 2006 Report Share Posted January 6, 2006 Jayne, I also wanted to say " Welcome " ! I have a 3 year 7 month old, , who has RSS. Pictures posted in photo section. I hope you are finding out that the people here are wonderful and full of information. The support here is awesome. I can't get on here half as much as I would like sometimes, though. ;o) Jodi R. 's mommy > > hi jayne!! > i see you have gotten alot of responses but i wanted to jump on the > welcome wagon!! this is such a great place for support and info!! > ((HUGS)) i have a 5yr old son, christopher who is rss. > > > > jodie c (one of 4 jodis on the list!!!) > Quote Link to comment Share on other sites More sharing options...
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