Guest guest Posted June 25, 2005 Report Share Posted June 25, 2005 --hi, of course any suggestions need to be discussed with your pediatrician, but you need to get him on periactin, it is a medicine that stimulates his appetite and makes him eat, mostif not all the kids here are on it, i made the HUGE mistake of taking my daughter off of it a year ago and had to fight the doctor to put her back on it, she is 39 inches tall and weighs 28 pounds, she has to have it to make her eat as well, it is finally starting to kick in, she wakes up in the middle of the night hungry..reminds me of when she was 'little' but if she is hungry then i will make her a bowl of cereal of ice cream or whatever she wants, she too went through every test in the book, we did the cystic fibrosis test 3 times because a little boy i babysat was diagnosed with it and he was just like her, everything the same so they presumed it was CF and did sseveral test before they decided it wasn't she is always in the hospital for dehydration, almost put in last week for it, but i would definately get him put on periactin and if he has any constipation problems, miralax.....as for the background, i too am 5'11 and my husband too is 6'4 thats weird!! LOL anyway, email me if you have any questions and let us know what the doctor says monday!! stephanei kyla 4 RSS- In RSS-Support , " " <christinafurman@y...> wrote: > I received a message from Emory Genetics that my son, , who > was diagnosed with RSS last week, has normal growth hormone levels. > So, now what? I have read that we can increase his caloric intake, > but he simply does not have an appetite some days. > > I did not have a chance to call thwm back to ask questions, so they > may have some suggestions. However, has VERY mild physical > charastics of RSS. However, he is 2 1/2 and weighs about 21 pounds. > > Now, for some background- my husband is 6'4'' and weighs about 190 > so he too is tall and thin. I am 5'11 and my daughter is 5 and is > taller than EVERYONE in all of her dance classes and at school. > > I am just a bit confused. His ped. office ran me ragged with every > test from Cystic Fibrosis to Renal Tubule Acidosis to try to pin > point why he is not gaining weight. > > I just want to know if any one else has this situation, and what you > all may have done in this situation. I also posted a pic under > Furman so you could get a feel for my two kids. Thia was > taken in February of this year... > > You guys are fantastic! > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 25, 2005 Report Share Posted June 25, 2005 ---one more thing, i just looked at the pictures and your kids are adorable!!!!! steph In RSS-Support , " " <christinafurman@y...> wrote: > I received a message from Emory Genetics that my son, , who > was diagnosed with RSS last week, has normal growth hormone levels. > So, now what? I have read that we can increase his caloric intake, > but he simply does not have an appetite some days. > > I did not have a chance to call thwm back to ask questions, so they > may have some suggestions. However, has VERY mild physical > charastics of RSS. However, he is 2 1/2 and weighs about 21 pounds. > > Now, for some background- my husband is 6'4'' and weighs about 190 > so he too is tall and thin. I am 5'11 and my daughter is 5 and is > taller than EVERYONE in all of her dance classes and at school. > > I am just a bit confused. His ped. office ran me ragged with every > test from Cystic Fibrosis to Renal Tubule Acidosis to try to pin > point why he is not gaining weight. > > I just want to know if any one else has this situation, and what you > all may have done in this situation. I also posted a pic under > Furman so you could get a feel for my two kids. Thia was > taken in February of this year... > > You guys are fantastic! > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 25, 2005 Report Share Posted June 25, 2005 Hi Im just checking that you know, most RSS kids have normal levels of growth hormone. Liam has a normal growth hormone level, its almost apart of RSS diagnosis. Thats why growth hormone treatment in some countries is hard to get for our kids, because they are not deficient. However more and more research is coming out to support growth hormone treatment in children with SGA?RSS benefiting from GH. If you knew this already I apologise, if you didnt then it just makes him more like most RSS kids(which isnt a bad thing) Take care Jody( mum to Liam 4 11kg 87cm and Cameron) > I received a message from Emory Genetics that my son, , who > was diagnosed with RSS last week, has normal growth hormone levels. > So, now what? I have read that we can increase his caloric intake, > but he simply does not have an appetite some days. > > I did not have a chance to call thwm back to ask questions, so they > may have some suggestions. However, has VERY mild physical > charastics of RSS. However, he is 2 1/2 and weighs about 21 pounds. > > Now, for some background- my husband is 6'4'' and weighs about 190 > so he too is tall and thin. I am 5'11 and my daughter is 5 and is > taller than EVERYONE in all of her dance classes and at school. > > I am just a bit confused. His ped. office ran me ragged with every > test from Cystic Fibrosis to Renal Tubule Acidosis to try to pin > point why he is not gaining weight. > > I just want to know if any one else has this situation, and what you > all may have done in this situation. I also posted a pic under > Furman so you could get a feel for my two kids. Thia was > taken in February of this year... > > You guys are fantastic! > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 26, 2005 Report Share Posted June 26, 2005 Hi , Most RSS children have normal growth hormone levels. My son is on growth hormones anyway. It is almost like they need extra gh in order to grow. Judith, Steve, (RSS) and (non RSS) 5 year old twins Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 26, 2005 Report Share Posted June 26, 2005 , Most RSS kids do have gh levels that are within " normal " limits. The problem is that they don't use what they have in an efficient manner. What needs to be done is tracking of the growth velocity and curve to see if he is using that gh to grow at a " normal " rate. Now, that normal rate for a regular child might be okay, but for a child who is far below the curve, not following the curve or flatlining, then intervention is needed. Let's take my son Max, for example. He is to going to be 17 next week. He has had numerous tests for gh levels, starting at 8 months of age. They always came back within normal limits. Dr. Harbison, however, kept track of his growth velocity over time and just before he turned 3 she declared that he was in growth failure and made up a certificate of medical necessity so he could begin gh therapy. It's been a long, hard road with Max. He has had numerous medical and other issues to deal with. The medical are related to RSS with severe reflux and gut dysmotility. The other stuff came about because of the medical issues and then he was diagnosed with Tourette Syndrome. Sigh. But Dr. H's aggressive gh protocol has paid off. Dr. H. just readjusted his predicted height to be 5'8 " ! This is after a few years ago that she told us that he developed gh resistance and she was not sure if he would even make it to 5'3 " . (She did say, and I quote, " If anyone is going to get that boy to grow, it will be me! " ) Please don't give up on the gh treatment if that is what you want for your child. It is more complicated than just the numbers you received. Join MAGIC and get every single document you can get your hands on -copies of all medical articles are free to members who request them. You are going to have to be an advocate for your child. And we will help you as you need it. Jodi Z Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 28, 2005 Report Share Posted June 28, 2005 Hi As far as I know most RSS Kids do hove normal growth hormone levels. My son Brady is 2 months away from being 3 and still doesn't weigh 20 lbs yet. There is a lot of stuff out there that can increase his caloric intake. You could always try to get him to drink stuff like pedisure, or even carnation instant Breakfast. They even have the ready to drink carnation instant Breakfast. Brady wasn't more than a month old and they put a feeding tube in his belly so he does get the calories that he does need. Just remember that is always a choice just in a case things get worse. If it wasn't for the feeding tube my Brady wouldn't be here today. Brady also started getting Growth Hormone shots in December 2004. The Growth Hormone has really helped a lot. His appetite has increased he is growing a lot better, and he is becoming stonger. I remember when he couldn't get up on to a chair by him self and about 4 months after the GH was started he could climb just about anything. Another thing we do with Brady is keep food in front of him all of the time and we let him eat where ever he wants. Although at meal time he has to sit at the table with the family. I really hope all of this helps a little. Nichols mom to Brady RSS 34 months and Kiersten nonRSS 17 months > I received a message from Emory Genetics that my son, , who > was diagnosed with RSS last week, has normal growth hormone levels. > So, now what? I have read that we can increase his caloric intake, > but he simply does not have an appetite some days. > > I did not have a chance to call thwm back to ask questions, so they > may have some suggestions. However, has VERY mild physical > charastics of RSS. However, he is 2 1/2 and weighs about 21 pounds. > > Now, for some background- my husband is 6'4'' and weighs about 190 > so he too is tall and thin. I am 5'11 and my daughter is 5 and is > taller than EVERYONE in all of her dance classes and at school. > > I am just a bit confused. His ped. office ran me ragged with every > test from Cystic Fibrosis to Renal Tubule Acidosis to try to pin > point why he is not gaining weight. > > I just want to know if any one else has this situation, and what you > all may have done in this situation. I also posted a pic under > Furman so you could get a feel for my two kids. Thia was > taken in February of this year... > > You guys are fantastic! > 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.