Guest guest Posted May 13, 1999 Report Share Posted May 13, 1999 , Jack had an x-ray of his wrist when he was 18mths old to determine his bone age. It showed that his bone age was 12mths i.e 6mths behind. I still have to speak to the endo about it but Jack's paed has said that her understanding of it is that it shows that Jack has the potential to be bigger/taller . If his bone age had been the same as his chronological age it would mean that his genes have determined his size and that he was always supposed to be this size. Does that make sense? I don't know if I have explained it properly. Elaine mum to Elise(7yrs) & Jack(22mths) CHaRGE Dumfries,Scotland Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 13, 1999 Report Share Posted May 13, 1999 , I'm not sure how it'll affect her yet, I just got the letter in the mail yesterday. Dr. Blake had a copy sent to me for my records. I haven't discussed it with anyone yet. All I know is we have our first endo appt in August {grrr, I wanted to take the summer off!} I think there are quite a few here on the list that have seen an endo before, they could better answer your endo questions! It didn't upset us to much getting this info, just another day in the life... We say to each other now, the only thing that would crush us now is death. Sounds pretty somber, but I don't think there's anything now we can't handle when it comes to Miss Kennedy. Mom to Kennedy 15 mos old CHARGEr, 9, 8, and wife to Graeme New Brunswick, Canada Visit the " Weir's homepage " at: http://www.geocities.com/SunsetStrip/Palms/5716 ICQ #1426476 Hi- Sorry to hear about the results of the test. It's so hard to find out new stuff. I've never heard of the Bone Age Test and I was just wondering how this affects Kennedy and what they will do about this new information? Is there something they can do to help this? Has she seen an endocrinologist before? Josh hasn't been to one yet but I think the genetisist recommended it. When did other kids first see the endocrinologist? I'm not really familiar with the problems in this area yet because we havn't faced any of them yet. mom to (3 months) CHarGE, and (2 years) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 13, 1999 Report Share Posted May 13, 1999 Elaine, I kind of got what you explained, I think I'll understand better when we actually go to the endo. I see her ped. at the end of May, so I'll be asking some questions there too. Mom to Kennedy 15 mos old CHARGEr, 9, 8, and wife to Graeme New Brunswick, Canada Visit the " Weir's homepage " at: http://www.geocities.com/SunsetStrip/Palms/5716 ICQ #1426476 >From: JMurraybel@... > >, >Jack had an x-ray of his wrist when he was 18mths old to determine his bone >age. It showed that his bone age was 12mths i.e 6mths behind. I still have to >speak to the endo about it but Jack's paed has said that her understanding of >it is that it shows that Jack has the potential to be bigger/taller . If his >bone age had been the same as his chronological age it would mean that his >genes have determined his size and that he was always supposed to be this >size. Does that make sense? I don't know if I have explained it properly. > >Elaine mum to Elise(7yrs) & Jack(22mths) CHaRGE >Dumfries,Scotland > >------------------------------------------------------------------------ >Get involved. Share your thoughts! >http://www.onelist.com >Join the ONElist Weekly Survey. Go to homepage for details. >------------------------------------------------------------------------ >4th International CHARGE Syndrome Conference, Houston, Texas, July >23-25, 1999. >For information about the CHARGE Syndrome Foundation or to become a member please contact marion@.... > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 13, 1999 Report Share Posted May 13, 1999 Michele, Dr. Kim Blake prompted the test {I have to excitedly squeal here - I'm SO lucky to have her...} In April she noticed Kennedy's weight was going up {21 lbs}, but she was still at the same height she was in January {28.5 inches}. She didn't want her to become " short and fat " . I'd rather get this over with now than let it develop into something worse as she gets older. Mom to Kennedy 15 mos old CHARGEr, 9, 8, and wife to Graeme New Brunswick, Canada Visit the " Weir's homepage " at: http://www.geocities.com/SunsetStrip/Palms/5716 ICQ #1426476 > > >- >What prompted the bone age test? What is Kennedy's size? Aubrie is 17 >mos, 17+ lbs, 30+ inches. Can they tell bone age from a chest xray? >Aubrie is having such problems with weight gain that I can't help but >wonder if she has an endo problem. We have no explanation for the >weight issues -- except now, of course, that we're weaning from the tube >and she doesn't have a huge appetite... > >Michele >mom to Aubrie (17 mos) CHaRgE and (7 yrs), wife to DJ, in IL >westml@... > > >------------------------------------------------------------------------ >Did you know ONElist has over 300 Star Wars lists? >http://www.ONElist.com >Join one today! >------------------------------------------------------------------------ >4th International CHARGE Syndrome Conference, Houston, Texas, July >23-25, 1999. >For information about the CHARGE Syndrome Foundation or to become a member please contact marion@.... > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 13, 1999 Report Share Posted May 13, 1999 - Aubrie's long and thin, so I guess this is one thing we can rest easy about for the time being, eh? Michele Graeme & Weir wrote: > > > Michele, > Dr. Kim Blake prompted the test {I have to excitedly squeal here - I'm SO > lucky to have her...} In April she noticed Kennedy's weight was going up {21 > lbs}, but she was still at the same height she was in January {28.5 inches}. > She didn't want her to become " short and fat " . I'd rather get this over > with now than let it develop into something worse as she gets older. > > Mom to Kennedy 15 mos old CHARGEr, 9, 8, and wife to Graeme > New Brunswick, Canada > > Visit the " Weir's homepage " at: > http://www.geocities.com/SunsetStrip/Palms/5716 > ICQ #1426476 > > > > > > >- > >What prompted the bone age test? What is Kennedy's size? Aubrie is 17 > >mos, 17+ lbs, 30+ inches. Can they tell bone age from a chest xray? > >Aubrie is having such problems with weight gain that I can't help but > >wonder if she has an endo problem. We have no explanation for the > >weight issues -- except now, of course, that we're weaning from the tube > >and she doesn't have a huge appetite... > > > >Michele > >mom to Aubrie (17 mos) CHaRgE and (7 yrs), wife to DJ, in IL > >westml@... > > > > > >------------------------------------------------------------------------ > >Did you know ONElist has over 300 Star Wars lists? > >http://www.ONElist.com > >Join one today! > >------------------------------------------------------------------------ > >4th International CHARGE Syndrome Conference, Houston, Texas, July > >23-25, 1999. > >For information about the CHARGE Syndrome Foundation or to become a member > please contact marion@.... > > > > ------------------------------------------------------------------------ > ONElist: bringing the world together. > http://www.onelist.com > Join a new list today! > ------------------------------------------------------------------------ > 4th International CHARGE Syndrome Conference, Houston, Texas, July > 23-25, 1999. > For information about the CHARGE Syndrome Foundation or to become a member please contact marion@.... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 13, 1999 Report Share Posted May 13, 1999 , My daughter Aubree is 14 years old and we have just been informed that we need to go have an xray of her hand. Since Aubree has not had a menstrual cycle, they said she can take growth hormones that will help her grow taller. Aubree is now a little of 4', which the genetic doc. said she will not get much taller, because the family is not real tall anyway. But Aubree does need to get a little taller, it seems her legs are really long (wish I had them). Wells Skeeter - Husband Aubree 14 Years (CHaRgE) Rhoni 16 Years ---------- > > To: CHARGEonelist > Subject: Re: Bone Age Test > Date: Wednesday, May 12, 1999 11:26 PM > Hi- Sorry to hear about the results of the test. It's so hard to find out new stuff. I've never heard of the Bone Age Test and I was just wondering how this affects Kennedy and what they will do about this new information? Is there something they can do to help this? Has she seen an endocrinologist before? Josh hasn't been to one yet but I think the genetisist recommended it. When did other kids first see the endocrinologist? I'm not really familiar with the problems in this area yet because we havn't faced any of them yet. mom to (3 months) CHarGE, and (2 years) Graeme & Weir wrote: > Hi all,I just got a letter back from the diagnostic imaging dept with > the results of Kennedy's bone age test she had done in April. Thought > some of you might be interested. BTW, a bone age test is simply done > by doing an x ray of their wrists.I'll type the letter, it's not too > long.BOTH HANDS FOR BONE AGE:This bone age determination has been made > using the Radiographic Atlas of Skeletal Development of the Hand and > Wrist by Greulien and Pyle.The bone age corresponds to the standard of > less than 3 months. There is ossification of the capitate. There is > no ossification of the hamate.The patient's chronological age is 14 > months. The standard deviation for 12 months is 1.77 months. This > places the patient's bone age well below two standard > deviations.OPINION:The patient's bone age is retarded. It is greater > than two standard deviations below the mean. <that's it>Anyway, just > thought you might find it interesting, we were a little surprised, but > hey, she's textbook CHARGE, every letter, and just about every side > possibility too so not TOO surprised. Dr. Blake suggested we have > this test done, I don't think I would've thought of it without her, > Kennedy just seemed to be growing okay to me. <little do I know>... > Anyhow, hi ho hi ho, it's off to ENDO we go! > Mom to Kennedy 15 mos old CHARGEr, 9, 8, and wife to Graeme > New Brunswick, Canada Visit the " Weir's homepage " at: > http://www.geocities.com/SunsetStrip/Palms/5716 > ICQ #1426476 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 13, 1999 Report Share Posted May 13, 1999 We have gotten 's bone age wrist x-ray done 3x, as if you want to begin growth hormones, you must do it before their bone plates fuse. apparently still has lots of room. As his growth hormones test normal, we are waiting, possibly testosterone will be needed in a couple of years (he's 12). I hope he grows, this has always been a big concern of mine, but with normal growth hormones, they say it's just part of the syndrome, and he can still grow for a longer period of time and hopefully catch up. Barbra M Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 13, 1999 Report Share Posted May 13, 1999 Casey, Gosh!! What's 's lifetime maximum if I may be so nosey?? I worry about that with Peyton. What happens when these guys are adults and they've used up all their insurance?? Medicaid? Just curious. Corrie mom to Peyton CHARGE and ? Re: Bone Age Test , A bone age done on at a bit over two years old showed that he was 14 months.. yep.. 10 months behind... and my endo can't see why I want him tested for GH... he's supposed to see her again in a month or so.. got a new endo this time.. we'll see what happens.. ly I have this thought in the back of my head they dont' want to test him cause if he needs GH it's covered under our ins and what HMO wants to put out $16,000 a year on a kid that is already into them for over a million.. Casey charge@... minnow@... Mom to Dawn 20, Ken 9 ADHD, and 7 CHARGE. Cobb California ICQ UIN# 728514 AIM Buddy List: ZeeCasey ------------------------------------------------------------------------ ONElist: the best source for group communications. http://www.onelist.com Join a new list today! ------------------------------------------------------------------------ 4th International CHARGE Syndrome Conference, Houston, Texas, July 23-25, 1999. For information about the CHARGE Syndrome Foundation or to become a member please contact marion@.... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 14, 1999 Report Share Posted May 14, 1999 , I'm not very clear on why this test is necessary? could you explain? is 15 mos and is about at a 8 mos level in her activity's except speech, still waiting...if her bone age was 6 mos behind would it make things normal for her & do they ever catch up? Hay Wife to , Mom to (4) Kaitlynn(21/2) & (15mos) Michele, Don't rest too easy...comfortably, but not too easy. You never know what's gonna pop up with these guys. As far as tests go, this wasn't too bad {just had to get her to hold her hands still}. I always think it never hurts to rule out this stuff by doing the test and getting it over with. Mom to Kennedy 15 mos old CHARGEr, 9, 8, and wife to Graeme New Brunswick, Canada Visit the " Weir's homepage " at: http://www.geocities.com/SunsetStrip/Palms/5716 ICQ #1426476 ------------------------------------------------------------------------ The Final Countdown is here! http://www.ONElist.com Join the " Star Wars " craze at ONElist. ------------------------------------------------------------------------ 4th International CHARGE Syndrome Conference, Houston, Texas, July 23-25, 1999. For information about the CHARGE Syndrome Foundation or to become a member please contact marion@.... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 22, 1999 Report Share Posted May 22, 1999 : What was the bone age test for? I must have missed something. What were they trying to learn from doing it? Anne Vanderbloemen mom of 2 CHARGE Madison Wisconsin P.S. This is to Everybody: I forgot, do you capitalize the letters of CHARGE that your kid currently has, lowering the case when the condition is repaired or resolved, or do you capitalize the letters your kid was born with, or what? I asked this once a long time ago but I forgot the answer...duh... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 23, 1999 Report Share Posted May 23, 1999 >: >What was the bone age test for? I must have missed something. What were >they trying to learn from doing it? >Anne Vanderbloemen mom of 2 CHARGE >Madison Wisconsin Anne, Dr. Blake wanted the test done as she felt Kennedy's weight was going up but not her height. She wanted it also as part of a work-up for our first endo appt. Mom to Kennedy 15 mos old CHARGEr, 9, 8, and wife to Graeme New Brunswick, Canada Visit the " Weir's homepage " at: http://www.geocities.com/SunsetStrip/Palms/5716 ICQ #1426476 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 25, 1999 Report Share Posted May 25, 1999 , 's weight is also going up faster than her height. It is finally starting to catch up, she is at the bottom of the chart on her weight and almost here with her height, its taken us along time to get here. At 6 mos she was only 6 pounds. What can they learn from a bone age test and what purpose does it serve? Cathie, Jeff and CHARgE almost 4 Quote Link to comment Share on other sites More sharing options...
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