Guest guest Posted March 1, 2006 Report Share Posted March 1, 2006 Hi , just thought i'd mention it, i dont know if you've joined the Child Growth Foundation, a uk version of magic, but they have a conference annually and this year its in sep,i rhink, i'm hoping to get down as i went a couple of years ago and met other rss kids and an adult for the first time ever and it was great, email me privately if you want more info morvmum wrote: > > > > This is the 2nd post ive made dont know where the first one ended > up > > so sorry if Im repeating myself. > > > > We were at the Endo yesterday who said that Morven definatly does > not > > have RSS.He said her catch up growth was too quick.She is 79 cm > and > > almost 20lb and she has just turned 17mths.He said he has never > know a > > baby this tall with RSS. > > > > Im not convinced though.She has too many anomalies.Webbed > toe,Dimple > > on bottom,Slightly rotated ear.Endo said all theses things are so > > common and that Im just looking for things. > > > > Does anyone else know of any kids who have been this height and > its > > tailed off?Morven is the 50th centile for height.When she was born > she > > wasnt even on the chart. > > > > Thanks > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 2, 2006 Report Share Posted March 2, 2006 , My daughter also has achieved so called " catch up " growth. She is now nearly 75% for height at just over 4ys old (30.5lbs and 41inc.) At Morvens age we had a feeding tube placed and her growth sky rocketed from there. She was obviously not eating enough calories and the tube provided her with necessary nutrition needed to maximize her growth potential. Now having said all of that I would be remiss if I did not point out a few things. Without the feeding tube I am quite sure she would NEVER have been able to grow this well. Also, her recent advancements in height we now know are because she is in adrenarche. I would urge any parent of an RSS child that is within " normal " growth percentiles to be sure to have a bone age done. Young RSS children have a delayed bone age, the age of their bones is younger than their chronological age. As the child ages at some point, usually around adrenarche, the bone age starts advancing farther than the chronological age. For Alyssa, her bone age at 2yrs (when her tube was placed) was 16 months. At 3yrs it had PASSED her chronological age and a year later at 4 her bone age is now nearly 7yrs. This means that the time left for her to grow before her bone plates fuse is getting shorter and shorter. So although she seems average for a 4 yr old, she isn't even on the charts for a 7yr old. Does this make sense?? We are treating her with Arimidex to slow down her bone age. A bone age is a simple way to determine whether Morven is " really " catching up. If her bone age is past her chronological age, she is losing growing time. So although she looks tall on paper now, later that may all change. Obviously I am not a doctor and can only share what we have learned with Alyssa. Perhaps your physician would be willing to do a bone age. If you are a member of MAGIC, (www.magicfoundation.org <http://www.magicfoundation.org/> ) you can get several articles from their Library Log to give to your doctor that documents what I've summarized above. Also they have a pamphlet that lists the characteristics of RSS. Unfortunately there is no test. Diagnosis is based on the child having many (thought some have more or less than others) of these specific characteristics. If Morven's bone age is not advanced or delayed, I think she is pretty tall as well as pretty heavy at her age for an RSS child. At Morven's age Alyssa was one71cm and only weighed 14lbs. That does not mean she might not be SGA. Was she small when she was born?? I'm not sure if you've mentioned it before?? Dayna _____ From: RSS-Support [mailto:RSS-Support ] On Behalf Of morvmum Sent: Wednesday, March 01, 2006 2:16 PM To: RSS-Support Subject: Re: Morvens Diagnosis > > > > This is the 2nd post ive made dont know where the first one ended > up > > so sorry if Im repeating myself. > > > > We were at the Endo yesterday who said that Morven definatly does > not > > have RSS.He said her catch up growth was too quick.She is 79 cm > and > > almost 20lb and she has just turned 17mths.He said he has never > know a > > baby this tall with RSS. > > > > Im not convinced though.She has too many anomalies.Webbed > toe,Dimple > > on bottom,Slightly rotated ear.Endo said all theses things are so > > common and that Im just looking for things. > > > > Does anyone else know of any kids who have been this height and > its > > tailed off?Morven is the 50th centile for height.When she was born > she > > wasnt even on the chart. > > > > Thanks > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 3, 2006 Report Share Posted March 3, 2006 Hi my name is Lori I have boy/girl twins Cole & Chloe. Chloe has been diagnosed with RSS. She never eats more than a 4 oz bottle but will eat baby food even 2 jars at a time she is 9 months and almost 11 lbs her twin is almost 19 lbs. Not sure if she just doesn't like formula because she eats food very aggressively. Any suggestions. morvmum wrote: > > > > > > > > This is the 2nd post ive made dont know where the first one > > ended > > > up > > > > so sorry if Im repeating myself. > > > > > > > > We were at the Endo yesterday who said that Morven definatly > > does > > > not > > > > have RSS.He said her catch up growth was too quick.She is 79 > cm > > > and > > > > almost 20lb and she has just turned 17mths.He said he has > never > > > know a > > > > baby this tall with RSS. > > > > > > > > Im not convinced though.She has too many anomalies.Webbed > > > toe,Dimple > > > > on bottom,Slightly rotated ear.Endo said all theses things are > > so > > > > common and that Im just looking for things. > > > > > > > > Does anyone else know of any kids who have been this height > and > > > its > > > > tailed off?Morven is the 50th centile for height.When she was > > born > > > she > > > > wasnt even on the chart. > > > > > > > > Thanks > > > > > > > > > > > > > > > > > > > > > > > > > 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.