Guest guest Posted June 20, 2001 Report Share Posted June 20, 2001 - My name is Salem, and I am the mother of a 5-year-old daughter named with RSS. Oh, I wish I could hug you right now!!! Please check out the website for magicfoundation.org and check out the literature for the RSS Division. I am the volunteer Division Director this year. Jodi Zwain is our email coordinator, and she will undoubtedly be sending you an email with a lot of good basic information, so I won't type it all here. What I would like to offer you (I don't know where you all live) is a scholarship to attend MAGIC's annual convention coming up in 6 weeks, if it would help you be able to attend. July 19-22 in Chicago. We currently have over 200 various RSS children, adults, and family members attending the convention (and 600 more children/adults with other growth disorders). On Friday, the RSS Division has an entire day dedicated to learning more about the latest treatments for RSS and its various charactertistics, as well as a presentation on your legal rights as an RSS parent in the educational system. Dr. Madeleine Harbison is a pediatric endocrinologist in New York City who is considered one of the three " RSS experts " in the world (Dr. Stanhope in London and Dr. Wollmann in Germany). Dr. Harbison currently has over 100 RSS patients and consults on hundreds more every year. She is making a full presentation, and in addition, will be visiting with every family/child that requests time (we will be making a schedule for the visits). Now, I want to give you some good news. The fact that your son has a genetic predisposition for tall genes is GREAT NEWS!!!! It means that if you choose to begin growth hormone shots in future years (and I do mean future - 3-5 years of age seems to be average around here), there is great hope that he could gain a great deal of incremental height!!!! I am 5'4 " and my husband is 6'4 " (his dad was 6'7 " ). was born at 37.5 weeks, and similar to Colin, was 5lbs and 17 " . Throughout her first 4 years, she seemed to be, on average, way below the 3rd %'tile on weight and either just below or sometimes around the 3%tile for height. However, in the year that we have begun flying to New York to see Dr. Harbison as her endocrinologist. First, we changed her diet to more complex carbos and tried Periactin (although we did discontinue it). Those first six months she gained 3 pounds but grew just 1 inch (normal rate for her age). We then began growth hormone shots in October. In the next 6 months, she has grown at least 3 inches more and gained over another 5 pounds (for a total of 4 inches growth and 8 pounds weight gain in the first year). Now she is actually hit the 25%'tile in height!!!! And climbing!!! Keep reading this listserve - you will find invaluable wisdom, support (and humor) every day. Feel free to call me at home if you want to talk. . Salem (, 5.5yrs, RSS - 35lbs, 42 " , and Tyler, 4.3yrs, 40lbs, 42.5 " ) RSS-Support wrote: > Hi , > > My name is Cheryl and I have 3 year old triplets, , , and > . is my RSS son. I'm sure others will post as to what kinds > of medical interventions you might be in for, but let me start by saying > you're not alone in this process. It is very difficult in the beginning to > learn your child " has something wrong with him/her " . I was in shock as well > when we first learned of s diagnosis. It does get a easier over time > when you've had a chance to digest things, learn more about RSS, and then > figure out what road you shall travel on. The main concern with RSS is > short-stature but for some kids, including my , it can potentially go > past just that. We learned that had RSS at 18 months, severe > congenital scolisios at 20 months as well as having a single kidney, then to > top things off at 23 months learned he's profoundly deaf. Deafness is not a > characteristic of RSS, but scoliosis is a potential as well as having a > single kidney. He also had 1 undescended teste / hernia that needed to be > corrected. > > To give you background on my triplets, they were born at 34 wks., was > 1.13 lbs., 14-1/2 " , was 4.5 lbs., 17-1/2 " , and was 5.1 lbs., > 19-1/2 " . The main reason for my delivery (I had a c-section) was > wasn't growing and we didn't know why. We thought he was small cause he > wasn't properly nutritioned in the womb, but boy were we wrong. As my kids > have gotten older the span in size between and /Jen has > significantly grown. is off the chart, Jen's in the 90th percentile, > and 's not even on the chart. So we say, what chart? It means > nothing in my house. We call being on the chart. He's in > the percentile. It's hard watching my kids being the exact same age > with such a size difference. You will probably get comments over time of > people thinking there's a year or two between them and noone will believe you > when you say they're twins. I argue with people all the time cause they > don't believe I've got triplets. They think my kids are either a year apart > from one another or I have twins and one other. But, that's all another > story I'll save for when you're kids are older. Comments - LOL! > > Overall, my is doing great. He's growing at his own pace (with the > help of a feeding tube and oral eating), his deafness has somewhat been > corrected with the aid of a Cochlear Implant which allows deaf kids to hear, > and right now we're waiting to see what we're going to do with the > scoliosis. He will eventually need back surgery, but time will tell. His > single kidney is functioning fine - we just monitor it 1X/year. And, I guess > that's about it. He's a wonderful little boy that I'm glad to have part of > our family. > > Take one day at a time and check out www.magicfoundation.org when you get a > chance. That will give you more info on RSS. Good luck and feel free to > write if you should have any questions for me. > > Cheryl > Mom to , , and - all 3 > > > jebarker@... wrote: > > > Hi, > > My name is and I have 6 mo. old boy/girl twins. My son Colin > > was IUGR and at 37 weeks was born at 4.3, 17 " . His twin was 6.8, 19 " . > > He has struggled with reflux and projectile vomiting since birth and > > as a result developed an oral aversion to the bottle and refuses to > > eat while awake. He takes about 20 oz. a day on average all while > > sleeping. > > > > He is now about 13.5 at 6.5 mo. and almost 24 " . We have been to many > > doctors trying to figure out why he refuses to eat, and recently the > > geneticist to determine why he is so small. We had just assumed he > > was small because he didn't eat. His twin is now in the 90% for > > height and 55% for weight. > > > > Yesterday Colin's physical therapist by mistake mentioned that they > > believe he has RSS. She assumed the doctors had told us. I have done > > some reading and he does appear to have all the symptoms. He has the > > large forehead, small pointy chin, small downturned mouth, lowset > > ears, low tone, sweaty head, hyperactive, and the fifth finger thing, > > among others. > > > > This has all come as quite a shock to my husband and I. Our families > > are both tall. My husband is 6.1 and I'm 5.7. My father is 6.6! So > > from what I've read online short stature is the primary concern with > > this disorder. Can they determine how tall they will be this early > > on? What is average for a male? Are the growth hormones effective? > > When do they start treatment? What else can be done for these kids? > > Realistically how is this going to impact his life? What kinds of > > medical intervention will he need? I just want to prepare myself for > > this and know what to expect? Will eating always be a struggle for > > him? How common is this disorder? > > > > It is so especially hard because he is a twin and his sister is > > growing so well. I have a feeling she will be tall and that will be > > hard on him growing up always in comparison to his sister. > > > > How do all of you deal with this? I am still in such a state of > > shock. We are waiting on a bone age study, a chromosome study, and a > > kidney ultrasound before the final diagnosis is determined, but it > > really sounds like this is it. > > > > Is there a way to post a picture so you could look at him and see if > > you think he has it? > > > > Thanks for listening.... > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
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