Guest guest Posted October 31, 2005 Report Share Posted October 31, 2005 Pernille has enough growth hormone in her system. The question is: will she get any effect of using growth hormone? Love from Stine mom to Kristoffer 5 and Pernille 3 RSS Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 31, 2005 Report Share Posted October 31, 2005 Stine ... I am certainly not the expert here but from what I know, most RSS kids aren't deficient but benefit greatly from still taking it! Others will respond I am sure! Dawna > > Pernille has enough growth hormone in her system. The question is: will she get any effect > of using growth hormone? > > Love from Stine mom to Kristoffer 5 and Pernille 3 RSS > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 31, 2005 Report Share Posted October 31, 2005 Stine, I think it was Dr. Stanhope from Great Ormond Street Hospital in London who said that our kids do produce growth hormone within the normal range, but they do not use it efficiently. (I'm sure if I got it wrong, someone will correct me.) That means that our kids need more gh than the " normal " child in order to grow. And to catch up in their growth. Remember, they start out behind and need that extra help to catch up. Jodi Z Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 27, 2005 Report Share Posted December 27, 2005 Jeanie, Most of our RSS kids do produce enough growth hormone, but they do not use what they have efficiently. They need the extra gh to maximize what they already have and to achieve catch-up growth. This cannot be done, according to Drs. Harbison and Stanhope, without first achieving catch-up growth through caloric replenishment. The caloric deficit must first be made up through eating or g-tube and then the child will start to grow and appear to be catching up. That growth will eventually flatline and then gh is started. Does this help at all? Jodi Z Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 27, 2005 Report Share Posted December 27, 2005 Yes. I am now wondering how old our kids are when they start to consider GH. I just want to make sure that we don't " miss the boat " , so to speak. I think the Geneticist that diagnosed Brockton was a little miffed that I want to see Dr. Harbison. Also, how important is an endocrinologist at this stage? They said that the Endo. involved in his case sees no reason to see him right now. I just don't know how concerned I should be and if I should be pressing the issue. Any advice and knowledge on these subjects is, of course, GREATLY appreciated! Thank you! Jeanie.......Brockton (16 mo. actual age, 13 1/2 corrected age, RSS) and 's (18) mom Jodi Zwain wrote: Jeanie, Most of our RSS kids do produce enough growth hormone, but they do not use what they have efficiently. They need the extra gh to maximize what they already have and to achieve catch-up growth. This cannot be done, according to Drs. Harbison and Stanhope, without first achieving catch-up growth through caloric replenishment. The caloric deficit must first be made up through eating or g-tube and then the child will start to grow and appear to be catching up. That growth will eventually flatline and then gh is started. Does this help at all? Jodi Z Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 28, 2005 Report Share Posted December 28, 2005 You won't miss the boat with starting gh. There are some who start at age 2 or 3 and others who don't start until several years later. It depends on several factors: -caloric repletion and catch-up growth from making up the calories -the flatlining of the catch-up growth -the age of your child when you are able to get to a knowledgable endo, who, by the way, does not necessarily have to be Dr. H., although she is an expert on RSS -blood sugar issues that may or may not exist in your child -the parents' readiness or willingness to use gh -and, I'm sure, other factors I just cannot think of at this point in time. Endocrinologists like to see patients at an early age so that they can begin tracking their growth and monitor eating and other changes in the body. Sometimes blood sugar/ketone issues do not arise at a young age, but will pop up in the preschool years. The endo will keep records of the child's weight/height/growth velocity, track asymmetry if it exists, watch for signs of adrenarche (some people see it in babies or toddlers, believe it or not), etc. Jeanie, you are not running out of time. Please don't feel as if you have to see someone yesterday. You are taking Brockton to doctors who are keeping an eye on his growth and other issues, so that is good. You should record any information they give you, including height and weight, growth velocity, etc. When you do get to an endocrinologist, that information will come in handy, helping the endo to see a pattern. The geneticist, by the way, may be a bit out of sorts because geneticists tend to " lose " patients once they start with endos. They like to keep track of their patients and offer advice and guidance, too. Some keep going to the geneticist, some do not. It's your choice. Jodi Z Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 28, 2005 Report Share Posted December 28, 2005 Hi Jeanie I have to second what Jodi Z said. Some kids start around the ages of 2-5, my son didn't start GH until he was 8. I would have liked to have started earlier, but there were several factors involved. First we didn't even KNOW there was a thing wrong with Adam until he was 2 years old. NO ONE said anything was amiss when he was an infant/baby. Once we started to figure there was something wrong, our doctors here in Canada said there was nothing they could do. Once THAT endo retired, the new one started to give out GH. It took me another year to convince Adam's father to allow the GH and so we started at 8. I remember asking Dr. H. if that age was too late and she said no way! So relax, do all the necessary steps (like calorie intake) first and get Brockton on the right path. If the endo is saying nothing can be done, well see Dr. H. or another endo. You have time and you will do what is best for Brockton! Oh I should say, Adam's projected height as an adult WITHOUT GH was 4'7 " ; he's now 4'8 " at the age of 13 so I have now been guaranteed 5 feet for sure and probably more than that. Deb Re: Re: Growth hormone Yes. I am now wondering how old our kids are when they start to consider GH. I just want to make sure that we don't " miss the boat " , so to speak. I think the Geneticist that diagnosed Brockton was a little miffed that I want to see Dr. Harbison. Also, how important is an endocrinologist at this stage? They said that the Endo. involved in his case sees no reason to see him right now. I just don't know how concerned I should be and if I should be pressing the issue. Any advice and knowledge on these subjects is, of course, GREATLY appreciated! Thank you! Jeanie.......Brockton (16 mo. actual age, 13 1/2 corrected age, RSS) and 's (18) mom Jodi Zwain wrote: Jeanie, Most of our RSS kids do produce enough growth hormone, but they do not use what they have efficiently. They need the extra gh to maximize what they already have and to achieve catch-up growth. This cannot be done, according to Drs. Harbison and Stanhope, without first achieving catch-up growth through caloric replenishment. The caloric deficit must first be made up through eating or g-tube and then the child will start to grow and appear to be catching up. That growth will eventually flatline and then gh is started. Does this help at all? Jodi Z Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 28, 2005 Report Share Posted December 28, 2005 Okay. Thanks. I'm still a little freaked out by the fact that Brockton lost weight last week. He's been following an upward curve right along but now he's got this " glitch " . I'm hoping when I take him back tomorrow he'll be over 16 lbs. How nice that would be. Deb wrote: Hi Jeanie I have to second what Jodi Z said. Some kids start around the ages of 2-5, my son didn't start GH until he was 8. I would have liked to have started earlier, but there were several factors involved. First we didn't even KNOW there was a thing wrong with Adam until he was 2 years old. NO ONE said anything was amiss when he was an infant/baby. Once we started to figure there was something wrong, our doctors here in Canada said there was nothing they could do. Once THAT endo retired, the new one started to give out GH. It took me another year to convince Adam's father to allow the GH and so we started at 8. I remember asking Dr. H. if that age was too late and she said no way! So relax, do all the necessary steps (like calorie intake) first and get Brockton on the right path. If the endo is saying nothing can be done, well see Dr. H. or another endo. You have time and you will do what is best for Brockton! Oh I should say, Adam's projected height as an adult WITHOUT GH was 4'7 " ; he's now 4'8 " at the age of 13 so I have now been guaranteed 5 feet for sure and probably more than that. Deb Re: Re: Growth hormone Yes. I am now wondering how old our kids are when they start to consider GH. I just want to make sure that we don't " miss the boat " , so to speak. I think the Geneticist that diagnosed Brockton was a little miffed that I want to see Dr. Harbison. Also, how important is an endocrinologist at this stage? They said that the Endo. involved in his case sees no reason to see him right now. I just don't know how concerned I should be and if I should be pressing the issue. Any advice and knowledge on these subjects is, of course, GREATLY appreciated! Thank you! Jeanie.......Brockton (16 mo. actual age, 13 1/2 corrected age, RSS) and 's (18) mom Jodi Zwain wrote: Jeanie, Most of our RSS kids do produce enough growth hormone, but they do not use what they have efficiently. They need the extra gh to maximize what they already have and to achieve catch-up growth. This cannot be done, according to Drs. Harbison and Stanhope, without first achieving catch-up growth through caloric replenishment. The caloric deficit must first be made up through eating or g-tube and then the child will start to grow and appear to be catching up. That growth will eventually flatline and then gh is started. Does this help at all? Jodi Z Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 20, 2006 Report Share Posted January 20, 2006 Hi Aidan's mom!! Welcome to the group!! My name is Pat, and I am g-ma to . just turned 4 years old in Dec. He currently weighs 28# 10oz (13kg) and measures 35.8 " (91cm) tall. Actually, it is my understanding that GH (Growth Hormone) does not rule growth in the human body until on or about the age of 2. Caloric intake does. So, most important at this age, is making sure that Aidan is getting enough calories to complete his catch-up growth. Completion of caloric catch-up growth can be different for each child. For my g-son, , it was determined that his " caloric catch-up " was attained when he stopped growing taller, but continued to gain weight, for a period of several months. His growth curve flat-lined while his weight curve continued to rise. Children on GHT usually increase their current growth velocity by 1.5 to 2 times. You need to be sure that Aidan will be able to gain weight at that same increased rate. Our first Endo, working with old information, didn't believe that GHT would make any real difference for an RSS child. She agreed to a 6-8 month " trial " period, but said that she would stop treatment if he didn't show " significant " results. This was when was only 15 months of age. When the 8 months would have been up, wouldn't have even been two. Not a " fair " trial, so we chose to work on his " catch-up growth " and wait until later to start him. How long is Aidan?? How much does he weigh? Do you have any problems with feeding him?? Have you had any problems with blood sugars, hypoglycemia, or relux?? All of these are part of the decision making process. Hope this helps answer your questions/ Pat (g-ma to , RSS, 4 yrs old, 28# 10.6oz, 35 " , G-Tube, GHT) Quote Link to comment Share on other sites More sharing options...
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