Guest guest Posted February 11, 2004 Report Share Posted February 11, 2004 Dear , I am not sure how much personal info I want to divulge on an open chat, but I would be happy to speak to you more privately. Why don't you email me at olson conn@.... Leave out the space, of course. I am excited that we are so close. I work just up the road from you on 75. Maybe we could have lunch one day. Conny > Conny, > > I'm actually in Garland and I work for Texas Instruments. I haven't had much > luck in the Texas area either. Luckily, I believe Colby is one of the milder > cases based on what I read about other kids on this list serve. For several > years, I couldn't get anyone to even discuss growth hormone with me and that > was at Children's here in Dallas. Since the FDA a couple of years ago, I > still haven't had much luck. Colby sees Dr. Sher (who is quite small > herself) but that has not helped. She stated that he was on the chart (the > first time ever and only at 3%) and that she would not delay puberty because > he was of puberty age. Basically a waste of my money since she is not on my > insurance plan. She did give him the Periactin but he will no longer take > because of his idea that it made him " fat " . > > Colby was actually determined by his baby doctor that he had RSS when he was > around 6 months old. Unfortunately that doctor left the area and finding > someone who can service Colby's need has been trying. I tried to interview > endos before making an initial appointment but that didn't work. They > insisted on " seeing " him first. Too much money with too little results. Now > I am just settled that ish Rite tracks the bones and the rest I leave > to normal RSS. > > Where in the area do you live? > > Regards, > Comrie > > Re: new member here of two yr. old RSS grandson > > Dear , > > I did not know that you were in the Dallas area. We are in the burbs > of Dallas ourselves. What doctors do you use? We have been going to > Children's and have not necessarily been pleased with the results. > > Conny, great-aunt to , 22 months old, 31.5 inches and about 20 > lbs. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 12, 2004 Report Share Posted February 12, 2004 Hello fellow Texans, I think you both know that we are from Texas. We use Cook's children's in Fort Worth. Storm has been on Growth Hormone for almost 2 years now. His Ped. Endo did say he would probably not stop puberty also, BUT there is a new Nurse Practitioner that we are now seeing and she said we would delay puberty!!!! I REALLY like her. She is in the office of Dr. and Dr. Willcutts, her name is Maura and she is incredible with Storm! If you can go to Cook's, I would highly recommend her! The doctors are okay, but she is fantastic! Just a little info for you to chew on! Carmen, Mom to Storm, age 8y 6m, 50 pounds and 48 inches!!! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 12, 2004 Report Share Posted February 12, 2004 Dear Carmen, Thanks! I remember before that you told me you were happy with the doctor's at Cook's. Thanks for reminding me. By the way, how is the busiest lady in Texas these days? Conny > Hello fellow Texans, > I think you both know that we are from Texas. We use Cook's > children's in Fort Worth. Storm has been on Growth Hormone for almost > 2 years now. His Ped. Endo did say he would probably not stop puberty > also, BUT there is a new Nurse Practitioner that we are now seeing > and she said we would delay puberty!!!! I REALLY like her. She is in > the office of Dr. and Dr. Willcutts, her name is Maura and she > is incredible with Storm! If you can go to Cook's, I would highly > recommend her! The doctors are okay, but she is fantastic! > Just a little info for you to chew on! > Carmen, Mom to Storm, age 8y 6m, 50 pounds and 48 inches!!! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 13, 2004 Report Share Posted February 13, 2004 Just wanted to let you know we are in the Dallas area as well and we talked to the doctors at Children's in Dallas. I was not highly inpressed with the way the doctors treated me on the phone. Went to see Dr. at Cook's in Fort Worth. We loved her and have been her patient every since. My son saw her for the first time when he was 6 months old and he is now almost 4. Hope this info helps, mother of 3y 9m, 33in and 20 pounds Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 13, 2004 Report Share Posted February 13, 2004 I've never posted here before but I've been reading for a long time. I didn't know there were so many people here that live in Texas. We live about 100 miles east of Dallas. We're going to see Dr for the first time on April 26. Is there any chance you will be there that day? It would be so cool if my daughter, could play with someone her size. She is 3 and a half and weighs 18 lbs. I think she is 32 inches tall but she's at least 31 " . I'll post more later if this works. Charlotte Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 14, 2004 Report Share Posted February 14, 2004 Charlotte, Hi! My name is Carmen and my 8 y.o. son has RSS. We live in ville, TX. My parents live in East Texas. Where are you? Tyler, Mt. Pleasant? Just thinking 100 miles East of Dallas. I wish we were going to be there the 26th, but we don't go back until the 30th! I hope you get to meet someone there! It's usually pretty crowded, but I don't think I've ever met any others with RSS in their office! Maybe we can meet up another time! Dr. is GREAT! The Nurse Practitioners are also great! We love Cindy and Maura, right now Maura is our favorite! Hope your trip is good! Carmen, Mom to Storm age 8y 6m, 50 pounds and 48 inches tall! GH since age 6y 7m Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 16, 2004 Report Share Posted February 16, 2004 Texas Moms, I can't believe there are so many of us that are so close. We need to set up a time to meet (have our own mini-convention) and reminisce for me since my son is probably the oldest of the group. I would love for him to meet other kids with his same condition here locally. Maybe he won't feel like he is the only one. I know the convention is every July but he doesn't want to go and be around only RSS kids either. Basically he says, " I have -Silvers, what's the big deal? I don't want to spend my whole weekend there. " Maybe meeting locally would be a balance. Also, you could benefit from meeting an older kid (12.75 years). Anybody game?? Regards, Re: Texas Area RSS Charlotte, Hi! My name is Carmen and my 8 y.o. son has RSS. We live in ville, TX. My parents live in East Texas. Where are you? Tyler, Mt. Pleasant? Just thinking 100 miles East of Dallas. I wish we were going to be there the 26th, but we don't go back until the 30th! I hope you get to meet someone there! It's usually pretty crowded, but I don't think I've ever met any others with RSS in their office! Maybe we can meet up another time! Dr. is GREAT! The Nurse Practitioners are also great! We love Cindy and Maura, right now Maura is our favorite! Hope your trip is good! Carmen, Mom to Storm age 8y 6m, 50 pounds and 48 inches tall! GH since age 6y 7m Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 17, 2004 Report Share Posted February 17, 2004 Hi, I have replied to a couple of Texas moms privately, but have never posted We live in Austin, Tx and have an almost 3 yr old son with RSS and a 6 yr old nonRSS. We went to the convention last summer and enjoyed it, but we aren't sure about this summer. We would love to meet anyone in the area...My inlaws live in ville, so we are there quite often. Would love to hear from you! mom to , 3 RSS, periactin,prilosec, GH and Cody, 6 Re: Texas Area RSS Charlotte, Hi! My name is Carmen and my 8 y.o. son has RSS. We live in ville, TX. My parents live in East Texas. Where are you? Tyler, Mt. Pleasant? Just thinking 100 miles East of Dallas. I wish we were going to be there the 26th, but we don't go back until the 30th! I hope you get to meet someone there! It's usually pretty crowded, but I don't think I've ever met any others with RSS in their office! Maybe we can meet up another time! Dr. is GREAT! The Nurse Practitioners are also great! We love Cindy and Maura, right now Maura is our favorite! Hope your trip is good! Carmen, Mom to Storm age 8y 6m, 50 pounds and 48 inches tall! GH since age 6y 7m Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 21, 2004 Report Share Posted February 21, 2004 , I'm game, but let me add that the convention in Chicago is not just hanging around a bunch of RSS kids! It is a blast!!! My RSS son loves it, but I think my non-RSS daughter loves it even more. They have a field trip, a dance and Bingo night (everyone wins something). There are lots of NON-RSS kids there, it is MAGIC, not just RSS. Plus, it is Chicago! We love it! The kids mostly love the pool!!! There is also a teen party.(We're not quite there yet!) Anyhow, I would love to get together here in Texas too! I know up in the New England area they have a get together every April! Anybody have any dates to consider. I have to know at least a couple of weeks in advance to get someone to keep all the foster kids! Blessings, Carmen, Storm's mom 8y6m Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.