Guest guest Posted October 20, 1999 Report Share Posted October 20, 1999 Okay, Jillian had her 6 month genetics appt and she has dropped in height from 25% to 3% and in weight from 10-25% to not even on the charts. She is 19 months old and is 30.5 inches and weighs 19lb4oz. The geneticist wants to send her to an endo. She had thyroid checkes and it's negative . Question......Is 19 mo too early to worry about that? Is the " short stature " in CHARGE basically the same as the " short stature " in Down Syndroem and it's just part of it so live with it? I mean I don't care if she's small or short but the docs are concerned with her size so how agressive should we be? I am tired of so many specialists that if I don't need to add another, I don't want to, but if it is definitly what she needs, then by golly , she'll get it wether I feel like another specialist or not. Any info on what age your kids started on GH therapy or got tested for a deficiency will be appreciated. What do they do to test and how do they get a bone age? Foely, Mom to 4, (CHARGE angel) and Jillian 19 month old cHaRGE Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 21, 1999 Report Share Posted October 21, 1999 , Kennedy just went to the endo for the first time about 2 months ago (18 months of age). We went because Dr. Blake wanted Kennedy to be seen as she felt that her weight was coming along nicely, but her height was not. She was getting " short & fat " . The endo felt that Kennedy did NOT have GHD, but we are going to re-check her weights/heights with her again in December, and if it's " iffy " , we will do the test for GHD then. Hope this helps. It might not hurt for you to go in and have a check up and have a chat with an endo. (I know, one more appt and you're gonna scream!! I'm there with ya!) Mom to Kennedy 20 mos old CHARGEr, 10, 8, and wife to Graeme New Brunswick, Canada Visit the " Weir 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 October 21, 1999 Report Share Posted October 21, 1999 > From: JFoley6163@... > > Okay, Jillian had her 6 month genetics appt and she has dropped in height > from 25% to 3% and in weight from 10-25% to not even on the charts. She is 19 > months old and is 30.5 inches and weighs 19lb4oz. The geneticist wants to > send her to an endo. She had thyroid checkes and it's negative . > > Question......Is 19 mo too early to worry about that? Is the " short stature " > in CHARGE basically the same as the " short stature " in Down Syndroem and it's > just part of it so live with it? I mean I don't care if she's small or short > but the docs are concerned with her size so how agressive should we be? I am > tired of so many specialists that if I don't need to add another, I don't > want to, but if it is definitly what she needs, then by golly , she'll get it > wether I feel like another specialist or not. > Any info on what age your kids started on GH therapy or got tested for a > deficiency will be appreciated. What do they do to test and how do they get a > bone age? > Hi ! We have been dealing with the growth hormone deficiency issue since was 5 months old and we are finally receiving our first shipment of G.H. today and will receive training on how to give it a week from Friday ( was 4 years old in August). Bone age is determined from a radiograph of the wrist. It takes multiple measurements of height over a period of time, bone age, and several blood tests before the endocrinologists will commit to starting treatment. This is a big decision due to the yearly cost ($5,000-$10,000 per year) and possiblity for lifetime treatment (due to bone density, lipoprotein metabolism, and cardiac issues). Most CHARGE kids have short to short end of normal stature, but it is proportionately more common for CHARGErs to have growth hormone deficiency than kids in the general population. has been off the charts small since he was ??? 15 or 18 months of age. The pediatric nephrologist (yes now in addition to the pediatric urologist for reflux) is concerned that his kidneys have not grown much at all for the last 2 years and are now more than 2 standard deviations below the normal range. Well, his feet also have not grown over 2 years (yes, still wearing the same size) and the whole boy is more than 2 standard deviations smaller than the normal range. Hopefully, growth hormone therapy will make all his body parts grow. Diagnosis and the road to treatment are long and slow so it is good to start plugging away at it now if there is some concern that it could be G.H. deficiency. Cheryl, , (6), (4, CHaRGE) MI P.S. is NOT the 4 or 5 yr old from MI whose mom is in denial-got a list of specialists a mile long and growing to prove it ; ) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 21, 1999 Report Share Posted October 21, 1999 > From: JFoley6163@... > > Okay, Jillian had her 6 month genetics appt and she has dropped in height > from 25% to 3% and in weight from 10-25% to not even on the charts. She is 19 > months old and is 30.5 inches and weighs 19lb4oz. The geneticist wants to > send her to an endo. She had thyroid checkes and it's negative . > > Question......Is 19 mo too early to worry about that? Is the " short stature " > in CHARGE basically the same as the " short stature " in Down Syndroem and it's > just part of it so live with it? I mean I don't care if she's small or short > but the docs are concerned with her size so how agressive should we be? I am > tired of so many specialists that if I don't need to add another, I don't > want to, but if it is definitly what she needs, then by golly , she'll get it > wether I feel like another specialist or not. > Any info on what age your kids started on GH therapy or got tested for a > deficiency will be appreciated. What do they do to test and how do they get a > bone age? > Hi ! We have been dealing with the growth hormone deficiency issue since was 5 months old and we are finally receiving our first shipment of G.H. today and will receive training on how to give it a week from Friday ( was 4 years old in August). Bone age is determined from a radiograph of the wrist. It takes multiple measurements of height over a period of time, bone age, and several blood tests before the endocrinologists will commit to starting treatment. This is a big decision due to the yearly cost ($5,000-$10,000 per year) and possiblity for lifetime treatment (due to bone density, lipoprotein metabolism, and cardiac issues). Most CHARGE kids have short to short end of normal stature, but it is proportionately more common for CHARGErs to have growth hormone deficiency than kids in the general population. has been off the charts small since he was ??? 15 or 18 months of age. The pediatric nephrologist (yes now in addition to the pediatric urologist for reflux) is concerned that his kidneys have not grown much at all for the last 2 years and are now more than 2 standard deviations below the normal range. Well, his feet also have not grown over 2 years (yes, still wearing the same size) and the whole boy is more than 2 standard deviations smaller than the normal range. Hopefully, growth hormone therapy will make all his body parts grow. Diagnosis and the road to treatment are long and slow so it is good to start plugging away at it now if there is some concern that it could be G.H. deficiency. Cheryl, , (6), (4, CHaRGE) MI P.S. is NOT the 4 or 5 yr old from MI whose mom is in denial-got a list of specialists a mile long and growing to prove it ; ) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 21, 1999 Report Share Posted October 21, 1999 > From: JFoley6163@... > > Okay, Jillian had her 6 month genetics appt and she has dropped in height > from 25% to 3% and in weight from 10-25% to not even on the charts. She is 19 > months old and is 30.5 inches and weighs 19lb4oz. The geneticist wants to > send her to an endo. She had thyroid checkes and it's negative . > > Question......Is 19 mo too early to worry about that? Is the " short stature " > in CHARGE basically the same as the " short stature " in Down Syndroem and it's > just part of it so live with it? I mean I don't care if she's small or short > but the docs are concerned with her size so how agressive should we be? I am > tired of so many specialists that if I don't need to add another, I don't > want to, but if it is definitly what she needs, then by golly , she'll get it > wether I feel like another specialist or not. > Any info on what age your kids started on GH therapy or got tested for a > deficiency will be appreciated. What do they do to test and how do they get a > bone age? > Hi ! We have been dealing with the growth hormone deficiency issue since was 5 months old and we are finally receiving our first shipment of G.H. today and will receive training on how to give it a week from Friday ( was 4 years old in August). Bone age is determined from a radiograph of the wrist. It takes multiple measurements of height over a period of time, bone age, and several blood tests before the endocrinologists will commit to starting treatment. This is a big decision due to the yearly cost ($5,000-$10,000 per year) and possiblity for lifetime treatment (due to bone density, lipoprotein metabolism, and cardiac issues). Most CHARGE kids have short to short end of normal stature, but it is proportionately more common for CHARGErs to have growth hormone deficiency than kids in the general population. has been off the charts small since he was ??? 15 or 18 months of age. The pediatric nephrologist (yes now in addition to the pediatric urologist for reflux) is concerned that his kidneys have not grown much at all for the last 2 years and are now more than 2 standard deviations below the normal range. Well, his feet also have not grown over 2 years (yes, still wearing the same size) and the whole boy is more than 2 standard deviations smaller than the normal range. Hopefully, growth hormone therapy will make all his body parts grow. Diagnosis and the road to treatment are long and slow so it is good to start plugging away at it now if there is some concern that it could be G.H. deficiency. Cheryl, , (6), (4, CHaRGE) MI P.S. is NOT the 4 or 5 yr old from MI whose mom is in denial-got a list of specialists a mile long and growing to prove it ; ) Quote Link to comment Share on other sites More sharing options...
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