Guest guest Posted January 29, 2004 Report Share Posted January 29, 2004 I think you have to take pen to paper and write down the pros and cons for her height. The studies I have recently read show NO difference for asymmetry change with things like GH or puberty. So I think you can cross that one off your list. The fact is that she is beginning puberty within a normal age range. So the primary reason you would be postponing puberty is to get her extra height. (If she was 8 years old, you might postpone also because who wants a pubertal emotional nightmare 8-year-old!). But your daughter is within the normal age range for puberty to begin. For those of you who are unfamiliar, due to the delayed bone age and unique growth pattern of the RSS/SGA child, puberty can be EVIL to getting an RSS/SGA child taller. THe RSS/SGA child enters puberty and suddenly their bone age rapidly accelerates, surpassing their chronological age, and then slows down, and the growth suddenly stops, far earlier than another " normal " child who started puberty at the same time. So.... you need to look at where your daughter is on the growth charts right now (and look at an RSS child's growth curves), and figure out where she might end up. SInce these growth charts were for kids WITHOUT treatment. I just took out the girls' growth chart RSS and plotted your daughter. She is doing really good so far on GH. So what I did was that I plotted her as if she now followed the RSS growth curve (which is flatter during puberty than the normal child growth curve). This is TOTAL GUESSWORK since I am not a doctor and don't know your daughter's background. But I am guessing if you didn't postpone puberty that her final adult height would end up around 149 cm??? (4'11 " ). HELP! Does anyone else have the charts that you could double check my work? I am assuming that she would NOT drop off and stop growing at age 13, so I am making some assumptions here. But let's say 149. If you postpone puberty, that curve would show her at around 158cm? (5'2 " ). So postponing puberty could get her an additional 3 inches? THat sounds like a lot. I may be off here. But I think that this is what you have to look at -- what incremental height would postponing her puberty gain you. Your doctor should be able to use these RSS growth charts and help you better than I. Because he/she will also know your daughter's bone age, and more accurately pinpoint it. Lupron has been around for a very long time, and has had a lot of studies done on the safety of it. So I think you are relatively OK with that issue. I am unfamiliar with Zolodex. Good luck with the decision! > Hello, this is Milou from Holland. We still doupt if we have to delay puberty with Lucrin (probably the same as Lupron). > Maartje(rss)is 11 years and 4 months. She is 139 cm and her weight is 28 kg. It seems that she begins starting puberty. She uses GH for almost three years. She gets it from a special study(research) which wants to prove that GH helps SGA children. The doctor advices us to delay puberty for two years. We don't know what to do. We are thinking of it all the time. We also spoke to an independent endocrinologe.after that consult we had the feeling not to delay, but still we doupt. We also wonder if delay puberty will have effect on her asymmetry. there is a possibility that her right side, which is shorter, will grow a longer time than her left side, so that she will less assymetrie finally. if we delay puberty maybe we waste this possibility. > It's so difficult to make a decision, but we have to decide this week. Who can give us more information and help us with this decision ? three years ago it was also very difficult to decide to start gh, but finally we knew what to do, but now we can't decide. > > greetings from Milou, mom of Maartje. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 30, 2004 Report Share Posted January 30, 2004 Milou, What is saying is correct and well-written. I do think you should consider delaying puberty if you want that extra height, but, as said, weigh the pros and cons before you decide. As for Lupron vs. Zoladex, I can help there. My son Max was on Zoladex for several years, but has now stopped taking it as he is 5' at 15.5 years and his bone age is still a year delayed. Dr. H. thinks that with Arimidex and gh, he will make it to at least 5'4 " . We'll take 5'3 " and be ecstatic! Back to L vs. Z. Basically, Lupron is an intramuscular injection that must be given every 28 days. That is a shot that hurts and will be sore for a couple of days after. Zoladex is a pellet that is inserted in the abdomen every 86 days or so. A tiny incision is made, using Emla cream first to numb the area (we applied it 4 hours in advance), and then a preloaded syringe is placed in the incision and a tiny pellet is released. The only after-effect is some minor bleeding and maybe a bruise, but the bruise is not as sore as it would be in the arm or leg. I hope this helps you. If you have more questions about the Zoladex, let me know. We loved using it. Jodi Z Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 30, 2004 Report Share Posted January 30, 2004 Milou, My daughter uses Lupron. There is a dose that is only given every 90 days. She receives it by the doctor in her buttocks. She has experienced minimal pain. Maybe 10 minutes sometimes only a minute. She started GH and Lupron injections at the same time at age 11yr 8mos. As of 11/03 she had grown almost 5 inches and her bone age is still delayed. Hope this info helps. ( Elyse 13yr 7mos. 146.7cm 31kg as of 11/03) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 2, 2004 Report Share Posted February 2, 2004 Hello ne, , Jodi, Kate and Thank you for your responses ! You've all helped us a lot. we didn't know there is a growth curve for rss children. I think it is unknown here in Holland. So we were very happy that you looked up Maartje in that curve. We did make a list with the pros and cons and we have finaly decided to postpone puberty. This morning we made an appointment with the doctor. Thursday we will do the Lucrin test. Our doctor told us indeed that the vaccination is painful, so we have to make us strong to help Maartje through this. Your help to us is wonderfull. It was just that what we needed. Just to know that you understand us and that you are thinking with us. Thank you !!! with love, Milou, mom of Maartje Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 11, 2004 Report Share Posted February 11, 2004 When you say that she has some signs of puberty, what do you mean? Remember that adrenarche begins first -- so body odor, underarm hair, pubic hair. Then as the body begins making estrogen (gosh I hope I am getting this right) but then breast buds (girl) and testicular enlargement (boys) begins, and this is actual puberty. The bone age begins to advance rapidly during the onset and continuation of puberty, and the actual " growing time " that normally occurs during puberty is shortened for an RSS child. So final adult height for an RSS child that is UNTREATED with GH should be plotted on an RSS growth chart and NOT on a regular growth chart. To truly determine if your daughter is entering puberty and not just the adrenarche phase, a blood test should be run looking at LSH/FSH levels (or some acronym like that). Your endo will know. Depending on those levels, you can then decide if you should even have a discussion about postponing puberty. The fact is that the NORMAL range of onset of puberty is 10.5-14 yrs or so for girls in general. So the fact is that your daughter is within the normal range. What you and your endo have to decide is where is she at RIGHT NOW in height, and if she begins puberty now and you do not postpone, where would this put her height, since her growing time will be shortened. You can not use a normal growth chart, though. I know this email isn't the perfect answer you are probably looking for, but hope it gives you some insight. Salem > Hello everyone, > > I've been a member for several years and have had the pleasure of reading all the posts from all the RSS families. I was wondering if anyone can help explain the whole delaying of puberty issue... I'm concerned that my daughter may start her period sooner than I would like and of course that would in turn affect her growth, right? is 10 1/2 years old (51 inches and 47 lbs) and has some signs of puberty and I have taken her in to see the endocrinologist and they did a bone age (which they said was 6 months behind) so it was not recommended that she be placed on any meds to delay puberty. Right now, they are predicting that her final height will be around 5 feet. I guess I'm confussed... she could start her period any time now but could it also be 1 or 2 years from now? What does the bone age indicate? I've put in a call to her endo but they are out of the office so I thought I would use my other resources. Thanks for all your support and help. > > > Revels > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 12, 2004 Report Share Posted February 12, 2004 , thanks so much for your response and it was very helpful. I think I may understand a little more about it and now know what kinds of questions to ask the endo. As far as the signs of puberty go, she has some body odor, pubic hair and breast buds which have gone now. She went to the endo in January but blood work was not done just a bone age which determined her bone age to be about 6 months less than her actual age. I guess I first need to determine what stage she is at right now and then go from there. I've put in a call to the endo and am waiting to hear back so I'll ask my questions then. Thanks for you help and wish me luck! Revels Re: Delay Puberty > When you say that she has some signs of puberty, what do you mean? > Remember that adrenarche begins first -- so body odor, underarm > hair, pubic hair. Then as the body begins making estrogen (gosh I > hope I am getting this right) but then breast buds (girl) and > testicular enlargement (boys) begins, and this is actual puberty. > > The bone age begins to advance rapidly during the onset and > continuation of puberty, and the actual " growing time " that normally > occurs during puberty is shortened for an RSS child. So final adult > height for an RSS child that is UNTREATED with GH should be plotted > on an RSS growth chart and NOT on a regular growth chart. > > To truly determine if your daughter is entering puberty and not just > the adrenarche phase, a blood test should be run looking at LSH/FSH > levels (or some acronym like that). Your endo will know. > > Depending on those levels, you can then decide if you should even > have a discussion about postponing puberty. > > The fact is that the NORMAL range of onset of puberty is 10.5-14 yrs > or so for girls in general. So the fact is that your daughter is > within the normal range. > > What you and your endo have to decide is where is she at RIGHT NOW > in height, and if she begins puberty now and you do not postpone, > where would this put her height, since her growing time will be > shortened. You can not use a normal growth chart, though. > > I know this email isn't the perfect answer you are probably looking > for, but hope it gives you some insight. Salem > > > > Hello everyone, > > > > I've been a member for several years and have had the pleasure > of reading all the posts from all the RSS families. I was wondering > if anyone can help explain the whole delaying of puberty issue... > I'm concerned that my daughter may start her period sooner than I > would like and of course that would in turn affect her growth, > right? is 10 1/2 years old (51 inches and 47 lbs) and has > some signs of puberty and I have taken her in to see the > endocrinologist and they did a bone age (which they said was 6 > months behind) so it was not recommended that she be placed on any > meds to delay puberty. Right now, they are predicting that her final > height will be around 5 feet. I guess I'm confussed... she could > start her period any time now but could it also be 1 or 2 years from > now? What does the bone age indicate? I've put in a call to her > endo but they are out of the office so I thought I would use my > other resources. Thanks for all your support and help. > > > > > > Revels > > > > > > > > Quote Link to comment Share on other sites More sharing options...
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