Guest guest Posted October 21, 2000 Report Share Posted October 21, 2000 Lissa, i can't help you but wanted to welcome you to the list. There are lots of supportive people here in this group and i am sure someone will be able to help you....hang in there. dawn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 21, 2000 Report Share Posted October 21, 2000 Lissa, i can't help you but wanted to welcome you to the list. There are lots of supportive people here in this group and i am sure someone will be able to help you....hang in there. dawn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 21, 2000 Report Share Posted October 21, 2000 Lissa, i can't help you but wanted to welcome you to the list. There are lots of supportive people here in this group and i am sure someone will be able to help you....hang in there. dawn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 10, 2001 Report Share Posted January 10, 2001 Welcome ! You've done wonderfully! It's great having you here! Carol Richmond, VA Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 10, 2001 Report Share Posted January 10, 2001 Welcome ! You've done wonderfully! It's great having you here! Carol Richmond, VA Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 10, 2001 Report Share Posted January 10, 2001 Welcome ! Great weight loss! It is very true that this is a tool and not the cure all to our obsession with food. I am struggling right now with overcoming the snack habit. Fell off the band wagon last week and am trying to get back on. We all are in this together. Glad to have you with us. Blessings! Renonna ) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 12, 2001 Report Share Posted February 12, 2001 Welcome Kim I hope you will hang around. You will learn many things. You are so lucky (?) to have already started GH and are on your way to some good treatment. My son Adam is 8 and we just FINALLY started in January. Insurance is still not set, but we'll see. You've come to a great place and I hope you will ask any questions you have and learn many new things. Where do you live? Debby lenhartk@... wrote: > My name is Kim and my son Jordan was diagnosed with RSS at age 1 1/2 > he is now 3 1/2. He is in a size 18mos. clothing and just had his > Gtube removed before Thanksgiving. We also started the GH shots in > October, and that is going, well, as good as 3 yr. olds like shots!! > > Since having the Gtube removed, he is such a happier child, it's hard > to be active and sleep hooked up to that pump!! > > He has short stature of course, but the left side is smaller from head > to toe(webbed of course)the worst of the asymetry is in his legs. His > feet are different sized, that makes purchasing shoes fun!! His fifth > fingers are turned in and the one on the left is bractydactly? very > short! > > But, he is wonderful and keeps us busy!!! Thanks for being there, I > didn't know you existed!!! > > Kim Lenhart > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 12, 2001 Report Share Posted February 12, 2001 Welcome Kim I hope you will hang around. You will learn many things. You are so lucky (?) to have already started GH and are on your way to some good treatment. My son Adam is 8 and we just FINALLY started in January. Insurance is still not set, but we'll see. You've come to a great place and I hope you will ask any questions you have and learn many new things. Where do you live? Debby lenhartk@... wrote: > My name is Kim and my son Jordan was diagnosed with RSS at age 1 1/2 > he is now 3 1/2. He is in a size 18mos. clothing and just had his > Gtube removed before Thanksgiving. We also started the GH shots in > October, and that is going, well, as good as 3 yr. olds like shots!! > > Since having the Gtube removed, he is such a happier child, it's hard > to be active and sleep hooked up to that pump!! > > He has short stature of course, but the left side is smaller from head > to toe(webbed of course)the worst of the asymetry is in his legs. His > feet are different sized, that makes purchasing shoes fun!! His fifth > fingers are turned in and the one on the left is bractydactly? very > short! > > But, he is wonderful and keeps us busy!!! Thanks for being there, I > didn't know you existed!!! > > Kim Lenhart > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 12, 2001 Report Share Posted February 12, 2001 Welcome Kim I hope you will hang around. You will learn many things. You are so lucky (?) to have already started GH and are on your way to some good treatment. My son Adam is 8 and we just FINALLY started in January. Insurance is still not set, but we'll see. You've come to a great place and I hope you will ask any questions you have and learn many new things. Where do you live? Debby lenhartk@... wrote: > My name is Kim and my son Jordan was diagnosed with RSS at age 1 1/2 > he is now 3 1/2. He is in a size 18mos. clothing and just had his > Gtube removed before Thanksgiving. We also started the GH shots in > October, and that is going, well, as good as 3 yr. olds like shots!! > > Since having the Gtube removed, he is such a happier child, it's hard > to be active and sleep hooked up to that pump!! > > He has short stature of course, but the left side is smaller from head > to toe(webbed of course)the worst of the asymetry is in his legs. His > feet are different sized, that makes purchasing shoes fun!! His fifth > fingers are turned in and the one on the left is bractydactly? very > short! > > But, he is wonderful and keeps us busy!!! Thanks for being there, I > didn't know you existed!!! > > Kim Lenhart > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 14, 2001 Report Share Posted February 14, 2001 Hi, Robin! Welcome to our site. You will find lots and lots of support here! I am the mom of a 12 year old boy with RSS - and, yes, he has ADHD. I have to leave to teach school now, but I will be back later today and I will tell you more about that. I just wanted to say hi before I leave. Jodi New Member > Hello Everyone, > I am so thrilled I finally found a site where I can connect with > other parents of children with RSS. My son was born > 9/7/95 and weighed 2lbs 15oz and was 17 " long, when he was born there > was not as much information about some of the issues we would have to > dealwith such as rsv, ear infections, poor suck, and poor eating > habits, tooth problems, its hard to explain to people that you cannot > just force them to eat and so on , now that he is in kindergarden we > are now searching out ways to get him OT and speech, he had been in > early intervention since he was born and after he turned 3 Mass > public Scools took over. Our problem now is we had bought a house in > New Hampshire and they don't offer public kindergarden and they told > me he did not have an identifiable need which if they took a good > listen and look they would see that he does have some issues, Our new > pedi. is try to get approval from our hmo for services. I was > wondering if any one else has had a similar situation? > > I was also wondering if any of you have experianced any ADD/related > symptoms? This is something new that has just come to light from an > eval at school. Thanks for listening I look forward to any input you > might have. > > Robin Leblanc rscobnoxs@... > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 14, 2001 Report Share Posted February 14, 2001 Hi, Robin! Welcome to our site. You will find lots and lots of support here! I am the mom of a 12 year old boy with RSS - and, yes, he has ADHD. I have to leave to teach school now, but I will be back later today and I will tell you more about that. I just wanted to say hi before I leave. Jodi New Member > Hello Everyone, > I am so thrilled I finally found a site where I can connect with > other parents of children with RSS. My son was born > 9/7/95 and weighed 2lbs 15oz and was 17 " long, when he was born there > was not as much information about some of the issues we would have to > dealwith such as rsv, ear infections, poor suck, and poor eating > habits, tooth problems, its hard to explain to people that you cannot > just force them to eat and so on , now that he is in kindergarden we > are now searching out ways to get him OT and speech, he had been in > early intervention since he was born and after he turned 3 Mass > public Scools took over. Our problem now is we had bought a house in > New Hampshire and they don't offer public kindergarden and they told > me he did not have an identifiable need which if they took a good > listen and look they would see that he does have some issues, Our new > pedi. is try to get approval from our hmo for services. I was > wondering if any one else has had a similar situation? > > I was also wondering if any of you have experianced any ADD/related > symptoms? This is something new that has just come to light from an > eval at school. Thanks for listening I look forward to any input you > might have. > > Robin Leblanc rscobnoxs@... > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 14, 2001 Report Share Posted February 14, 2001 Hi, Robin! Welcome to our site. You will find lots and lots of support here! I am the mom of a 12 year old boy with RSS - and, yes, he has ADHD. I have to leave to teach school now, but I will be back later today and I will tell you more about that. I just wanted to say hi before I leave. Jodi New Member > Hello Everyone, > I am so thrilled I finally found a site where I can connect with > other parents of children with RSS. My son was born > 9/7/95 and weighed 2lbs 15oz and was 17 " long, when he was born there > was not as much information about some of the issues we would have to > dealwith such as rsv, ear infections, poor suck, and poor eating > habits, tooth problems, its hard to explain to people that you cannot > just force them to eat and so on , now that he is in kindergarden we > are now searching out ways to get him OT and speech, he had been in > early intervention since he was born and after he turned 3 Mass > public Scools took over. Our problem now is we had bought a house in > New Hampshire and they don't offer public kindergarden and they told > me he did not have an identifiable need which if they took a good > listen and look they would see that he does have some issues, Our new > pedi. is try to get approval from our hmo for services. I was > wondering if any one else has had a similar situation? > > I was also wondering if any of you have experianced any ADD/related > symptoms? This is something new that has just come to light from an > eval at school. Thanks for listening I look forward to any input you > might have. > > Robin Leblanc rscobnoxs@... > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 18, 2001 Report Share Posted February 18, 2001 > Hello, I am a new member also and live in Southern California Welcome. Hi, I guess I need to be " California Debbie " to avoid confusion! , I see you have Kaiser too. I go to the Kaiser in Fontana. I had Kaiser when they sent me to UCLA, because the first ERCP they did at Kaiser made me very sick with a pseudocyst and many other complications and the doc thought it best to send me elsewhere. The next year my Kaiser doc did other ERCP's, and I would only get the pancreatitis without the other complications. He actually is a very good doc, if you look at my pancreas cross-eyed I get pancreatitis LOL :)I am worried about this ERCP, just because I am older I guess (not too old, I am 41, but older since the last one!)The doc doing it is very good, and is friends with Dr. Sherman at IU (who used to be at UCLA). Anyway, thanks for the welcome everyone!! California Debbie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 18, 2001 Report Share Posted February 18, 2001 > Hello, I am a new member also and live in Southern California Welcome. Hi, I guess I need to be " California Debbie " to avoid confusion! , I see you have Kaiser too. I go to the Kaiser in Fontana. I had Kaiser when they sent me to UCLA, because the first ERCP they did at Kaiser made me very sick with a pseudocyst and many other complications and the doc thought it best to send me elsewhere. The next year my Kaiser doc did other ERCP's, and I would only get the pancreatitis without the other complications. He actually is a very good doc, if you look at my pancreas cross-eyed I get pancreatitis LOL :)I am worried about this ERCP, just because I am older I guess (not too old, I am 41, but older since the last one!)The doc doing it is very good, and is friends with Dr. Sherman at IU (who used to be at UCLA). Anyway, thanks for the welcome everyone!! California Debbie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 18, 2001 Report Share Posted February 18, 2001 > Hi Debbie #3... *LOL* > > I am the Colorado Debi, and I having an ercp/ sphinct on Friday to open a duct. I'm not sure > which one, and didn't know there was more than one to be opened. I have pancreatic > divisum, so I'm sure it is the main duct that needs to be opened. The vicodin is still in > me, or I'd remember the name... > > Nice to meet you, and we will keep our fingers crossed for each other! > Hi, it is only recently that a pancreatic duct could be cut during an ERCP. They measure the pressures inside the duct and if they are too high they cut it. I have had 3 pancreatic stents, but they never last very long (they get plugged). I have had pancreatitis almost constantly since July 2000, with 3 hospitalizations, I am ready to get the ERCP over with! Hugs and good luck to you Colorado Debbie!!! From, California Debbie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 18, 2001 Report Share Posted February 18, 2001 > Hi Debbie #3... *LOL* > > I am the Colorado Debi, and I having an ercp/ sphinct on Friday to open a duct. I'm not sure > which one, and didn't know there was more than one to be opened. I have pancreatic > divisum, so I'm sure it is the main duct that needs to be opened. The vicodin is still in > me, or I'd remember the name... > > Nice to meet you, and we will keep our fingers crossed for each other! > Hi, it is only recently that a pancreatic duct could be cut during an ERCP. They measure the pressures inside the duct and if they are too high they cut it. I have had 3 pancreatic stents, but they never last very long (they get plugged). I have had pancreatitis almost constantly since July 2000, with 3 hospitalizations, I am ready to get the ERCP over with! Hugs and good luck to you Colorado Debbie!!! From, California Debbie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 20, 2001 Report Share Posted February 20, 2001 Hi Debbie. Sorry I have not responded earlier. I work a second job (working with adolescents) other than my 40 hour Social Work job and I found that although I can read the postings at work I can not respond. It is good to meet you. I am new to Kaiser. brand new and frustrated because they won't do anything without my old recors and my old doctors are dragging their feet. I took today off because I am not feeling well and I need to get to Kaiser and get blodd work done as well as an EKG. I wonder if your doctor might know someone at the Panorama center that he could recomend. So many doctors know little or nothing about this. The first one I saw at Kaiser said to me " Oh, so you are hooked on Vicodin! " The Pain Management Clinic there told me I am not elligible because I am taking " only 12 a day " Go figure!! Anyway, it is nice to meet you hope you are feeling better today I am sending you visiona of white and pink healing light!! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 20, 2001 Report Share Posted February 20, 2001 Hi Shirley, Thanks for your input. I do not have an ERCP coming up, I was just courious as to everyone's opinion. Ya know, a then & now theory. Thanks for your suggestion. After my bad time at Ohio State, no one else will ever do an ERCP on me except Dr. Lehman. By the way, nothing anyone says will ever scare me as much as the ERCP itself does. I'm just terrified of them! I think after the Ohio State ordeal, nothing will ever change my thinking! Hey, I read you are finally eating. YOU GO GIRL!! Talk to you later. Lots of Hugs, ______________________________________________________________________ > Hi , I found no difference with the ercp from 93 to now. I did have Dr. > Lehman do all my ercps and stints which I feel are harmful but if anyone is > going to do them he or Dr. Sherman would be the best. I hope this helps and > not scares you. Love, Shirley Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 20, 2001 Report Share Posted February 20, 2001 > Hi Debbie. Sorry I have not responded earlier. I work a second job (working > with adolescents) other than my 40 hour Social Work job and I found that > although I can read the postings at work I can not respond. It is good to > meet you. I am new to Kaiser. brand new and frustrated because they won't do > anything without my old recors and my old doctors are dragging their feet. I > took today off because I am not feeling well and I need to get to Kaiser and > get blodd work done as well as an EKG. I wonder if your doctor might know > someone at the Panorama center that he could recomend. So many doctors know > little or nothing about this. The first one I saw at Kaiser said to me " Oh, > so you are hooked on Vicodin! " The Pain Management Clinic there told me I am > not elligible because I am taking " only 12 a day " Go figure!! Anyway, it is > nice to meet you hope you are feeling better today I am sending you visiona > of white and pink healing light!! Hi , I can't remember, have you had an ERCP? Has Kaiser sent you to the GI clinic yet? I will see my doctor on March 1st and I will ask him about Panorama. I wonder if you need an ERCP, maybe you can come to Fontana, Dr. Kestenbaum is excellent. So they are treating the pain, are they treating the cause? You need a referral to the GI dept as soon as possible. Don't just stop taking the Vicodin, if they won't give you more you should wean off of it (of course you still would have pain!)There has to be someone there that can understand your problem. Hope you are feeling better. Keep me posted! Cal Debbie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 20, 2001 Report Share Posted February 20, 2001 > Hi Debbie. Sorry I have not responded earlier. I work a second job (working > with adolescents) other than my 40 hour Social Work job and I found that > although I can read the postings at work I can not respond. It is good to > meet you. I am new to Kaiser. brand new and frustrated because they won't do > anything without my old recors and my old doctors are dragging their feet. I > took today off because I am not feeling well and I need to get to Kaiser and > get blodd work done as well as an EKG. I wonder if your doctor might know > someone at the Panorama center that he could recomend. So many doctors know > little or nothing about this. The first one I saw at Kaiser said to me " Oh, > so you are hooked on Vicodin! " The Pain Management Clinic there told me I am > not elligible because I am taking " only 12 a day " Go figure!! Anyway, it is > nice to meet you hope you are feeling better today I am sending you visiona > of white and pink healing light!! Hi , I can't remember, have you had an ERCP? Has Kaiser sent you to the GI clinic yet? I will see my doctor on March 1st and I will ask him about Panorama. I wonder if you need an ERCP, maybe you can come to Fontana, Dr. Kestenbaum is excellent. So they are treating the pain, are they treating the cause? You need a referral to the GI dept as soon as possible. Don't just stop taking the Vicodin, if they won't give you more you should wean off of it (of course you still would have pain!)There has to be someone there that can understand your problem. Hope you are feeling better. Keep me posted! Cal Debbie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 3, 2001 Report Share Posted April 3, 2001 WOW - I don't believe it, another Aussie !!! (I am assuming New South Wales for the NSW) Welcome to the group ne my son Darcy is 16 months and we're in Melbourne, we look forward to hearing more from you. Steph (mum to Darcy 16 months ?RSS various other physical malformations and Tessa 5) > My name is ne, and my son was diagnosed with RSS at 2 years of age. > was born at 25 weeks weighing 800 grams with the usual complications expected of such a premature infant. is now 14 years old. > His height is currently 136cm and he weighs 29 kg. His bone age is 11, and growth age 10. > > Although closely monitored over the years, he has had no treatment for his short stature. The studies available 12 years ago were inconclusive as to the benefits of GH in RSS children. > > He has suffered no ill effects from our decision to withhold GH. He is currently in his 2nd year at high school and doing extremely well at school. He also has the confidence of a politician and will tackle any task put before him. He does find team sports difficult because he is so much shorter than his peers. This has been overcome by many sporting organisations allowing him to compete 2 to 3 years below his chronogicial age. > > He is lucky in that we live in a small town in NSW where everyone has known him since his birth and have always looked out for him (he has never been bullied because of his size) and included him in all activities. > > I have enjoyed reading the different e-mails and reading of the same tests and results that we went through over the past 10 years . Believe it or not, you do forget the horror times and can actually sit back and enjoy them, and their pursuits in life. > > If there are any older RSS children I would be interested to hear how they have fared with or without GH. > > ne > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 11, 2001 Report Share Posted April 11, 2001 Hi , Welcome to our group. I hope we can answer your questions. First, as far as treatment with growth hormone, that depends on your son and his doctor. Some doctors are opposed to growth hormone for RSS. Other doctors, like Dr. Harbison in NY use growth hormone regurlarly. Most are some where in between. Also, a diagnosis of RSS doesn't have to wait until 2. Many on this list have children that were diagnosed almost at birth. My son was first diagnosed with RSS when he was about 1. Others were not diagnosed until much later. Last, There are others on this list who live in New Zealand and Austrialia. If you have any questions, please feel free to ask. I hope this helps. Ken M > hi > My name is . > My gorgeous little boy is currently 16 months old. He was born at 35 > weeks weighing 1515grams - 3lb 5oz. He has not done any " catching > up " in terms of weight and length since birth. I was interested > recently to learn about RSS - having been told by one doctor that my > son was " just little " I decided to do some investigating of my own! > I found the MAGIC web site and of course tne RSS page - Finlay has > ALL the charecteristic traits of RSS - mnay traits we had observed > over the last few months but not realised they were at all related - > eg small high ptiched voice, curved fifth finger, small crowded > teeth, lateness of closure of fontanel...incredible > Anyway we have not receive a formal diagnosis but were already aware > that being small was always going to be an issue for him. My > understanding is that RSS is not diagnosed or " treated " in terms of > GH therapy until after the age of 2 - but it has been great to read > all of the posts on this site and just find out a bit more about the > road ahead! > Finlay is currently 16 months old and weighs 7 kg (14 lbs???) we have > been using periactin anyway for the last few months and also a liquid > fod supplement - pediasure . > We live in New Zealand and would be interested in hearing of anyone > else with a similar experience > Many thanks > Jul Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 11, 2001 Report Share Posted April 11, 2001 Hi , Welcome to our group. I hope we can answer your questions. First, as far as treatment with growth hormone, that depends on your son and his doctor. Some doctors are opposed to growth hormone for RSS. Other doctors, like Dr. Harbison in NY use growth hormone regurlarly. Most are some where in between. Also, a diagnosis of RSS doesn't have to wait until 2. Many on this list have children that were diagnosed almost at birth. My son was first diagnosed with RSS when he was about 1. Others were not diagnosed until much later. Last, There are others on this list who live in New Zealand and Austrialia. If you have any questions, please feel free to ask. I hope this helps. Ken M > hi > My name is . > My gorgeous little boy is currently 16 months old. He was born at 35 > weeks weighing 1515grams - 3lb 5oz. He has not done any " catching > up " in terms of weight and length since birth. I was interested > recently to learn about RSS - having been told by one doctor that my > son was " just little " I decided to do some investigating of my own! > I found the MAGIC web site and of course tne RSS page - Finlay has > ALL the charecteristic traits of RSS - mnay traits we had observed > over the last few months but not realised they were at all related - > eg small high ptiched voice, curved fifth finger, small crowded > teeth, lateness of closure of fontanel...incredible > Anyway we have not receive a formal diagnosis but were already aware > that being small was always going to be an issue for him. My > understanding is that RSS is not diagnosed or " treated " in terms of > GH therapy until after the age of 2 - but it has been great to read > all of the posts on this site and just find out a bit more about the > road ahead! > Finlay is currently 16 months old and weighs 7 kg (14 lbs???) we have > been using periactin anyway for the last few months and also a liquid > fod supplement - pediasure . > We live in New Zealand and would be interested in hearing of anyone > else with a similar experience > Many thanks > Jul Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 11, 2001 Report Share Posted April 11, 2001 Hi , Welcome to our group. I hope we can answer your questions. First, as far as treatment with growth hormone, that depends on your son and his doctor. Some doctors are opposed to growth hormone for RSS. Other doctors, like Dr. Harbison in NY use growth hormone regurlarly. Most are some where in between. Also, a diagnosis of RSS doesn't have to wait until 2. Many on this list have children that were diagnosed almost at birth. My son was first diagnosed with RSS when he was about 1. Others were not diagnosed until much later. Last, There are others on this list who live in New Zealand and Austrialia. If you have any questions, please feel free to ask. I hope this helps. Ken M > hi > My name is . > My gorgeous little boy is currently 16 months old. He was born at 35 > weeks weighing 1515grams - 3lb 5oz. He has not done any " catching > up " in terms of weight and length since birth. I was interested > recently to learn about RSS - having been told by one doctor that my > son was " just little " I decided to do some investigating of my own! > I found the MAGIC web site and of course tne RSS page - Finlay has > ALL the charecteristic traits of RSS - mnay traits we had observed > over the last few months but not realised they were at all related - > eg small high ptiched voice, curved fifth finger, small crowded > teeth, lateness of closure of fontanel...incredible > Anyway we have not receive a formal diagnosis but were already aware > that being small was always going to be an issue for him. My > understanding is that RSS is not diagnosed or " treated " in terms of > GH therapy until after the age of 2 - but it has been great to read > all of the posts on this site and just find out a bit more about the > road ahead! > Finlay is currently 16 months old and weighs 7 kg (14 lbs???) we have > been using periactin anyway for the last few months and also a liquid > fod supplement - pediasure . > We live in New Zealand and would be interested in hearing of anyone > else with a similar experience > Many thanks > Jul Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 20, 2001 Report Share Posted April 20, 2001 Hi Welcome to the group. You've found a great place, and as you've mentioned, you learn so much from here. My son Adam, is 8 and in Grade 3 here in Canada. He is terribly small compared to his peers but I can honestly say that what the other kids say is not an issue. First, most of " our " kids seem to have these incredibly resilient personalities, which I have always felt was God's gift to them. They are also extremely warm and affectionate which pulls on the heart strings of whomever they meet. Those two things combined make them irresistible!! I can not begin to even count how many times I have heard someone say " he is so cute " when referring to Adam. Supermarket, school, Church, you name it, I hear it. Part of their resilience comes from this ability to stand up for themselves. Adam doesn't have problems with his peers, but often with adults. They don't mean any harm but I have often heard an adult say " you are such a polite little boy " or " you are such a cute little boy " (the key word being little) and these people mean well. But Adam will very firmly say " I am NOT little I am 8 " and that's that. He doesn't seem to carry any type of stigma from that but is very (I mean very!!) outspoken when he wants or needs something. He is not shy to tell someone exactly what he thinks--and he believes he has every right to correct people and then it's forgotten. I can't describe it any better than that. But that is definitely not our worry. Time will tell for you, but I bet some of the phrases I've used above to describe Adam, you were probably nodding your head and saying " same as my son " . They all seem to be terrific, special kids. Take everything one day at a time is my best advice. Being a teacher, I would add that it probably isn't a good idea to keep him back a year. I know exactly what you are saying, I was offered the same when Adam was in J.K. (age 4) to be held back a second year. Everyone at the school said due to his size he wouldn't " stand out " (which is true). I was worried he would be bored a second time through the curriculum and didn't keep him back. I am so glad I didn't!!! Now that he is older, age is something all the kids talk about. Yes he is the smallest but he can say " I am 8 too!! " if he had to say " I am 9 " and the others were 8; he'd probably then feel really " different " . He's the same age as all his peers and, for kids, age is the comparison (more than size)! Just my humble opinion, but our school system is a firm believer in age appropriate placements. Now if in your school system it is common to " repeat " grades or start late, well then he has a chance of not being the only kid a year older than everyone else and yet, much smaller. Good luck on your journey. And please write often with any questions, comments etc. etc. you may have. Debby wilkinsonz@... wrote: > Hello, > > My name is Wilkinson, and I'm a new member of this group > (thanks to our friends and Finlay here in Wellington, NZ). Our > son Tyler was born on 1/29/99 at 31 weeks with severe IUGR. He > weighed 1 lb 8 oz and was 12 " long - very scary start to life, but we > are happy to say that he is a very healthy, happy little boy now and > our only concern is his growth/weight. > > He was " supposed " to catch up by age 2, but it's now apparent that > that did not happen! He's still under the 3rd percentile at 31.5 " > tall and 18.5 lbs. We've seen a pediatric endocrinologist who has > performed several tests, although we won't know the results for a > couple of months. Regardless of whether he has RSS, the doctor made > it pretty clear that he thought that Tyler will most likely start on > GHT sometime this year. > > I'm really glad we've found this group because I've already learned a > bit through reading lots and lots of messages. We discontinued the > Periactin because Tyler's appetite didn't seem to be affected at > all. Thanks to your messages, I'm now determined to give it another > really good chance. > > Apart from the medical intervention, I'm most concerned with how > he'll be affected at school. At age 2, he and the other kids are > still unaware that Tyler is " different. " But by age 3 (when he > starts kindergarten here in New Zealand), I'm worried that his > personality might be affected by what other people say. > > Does anyone have any experience or advice about the pros and cons of > holding children back a year at school? By his " due date " he would > be one of the youngest children in the class if we don't hold him > back. But based on his actual birthdate, they might be reluctant to > keep him back. It might seem early to start thinking about it now, > but he'll start kindergarten in 8 months. > > My husband is a New Zealander, but I'm American (with parents in > Milwaukee) - so hopefully, next year we'll be able to plan a trip to > Chicago to go to the annual MAGIC convention. 25 hours on a plane > with two small children is not very fun - but it sounds like it would > be well worth it!!! > > Many thanks, > > (mom to Tyler, 2 (IUGR/RSS?) and , 10 months) > > > > > Quote Link to comment Share on other sites More sharing options...
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