Guest guest Posted December 8, 2003 Report Share Posted December 8, 2003 hi I just um signed up I guess for this today and am amazed that there is communication in my box here already. I guess I was unsure what to expect. I am wondering why choose to have the shots?? Is it just so the kids will not be so much shorter? is this for emotional reasons or is there physical reasons to do that? My son with charge is ten and two feet smaller then the kids in his class. but with how thin he is I just cant imagine him being any taller. our dr today said that I know more about charge then he does. and I am wondering what else I should be looking at for him (wesley) . I asked the dr today if he would look more into charge because of bowl problems wes has Im wondering if they are connected at all does anyone have troubles with the kids with charge not controlling their bowls? I only found one other mention of this on net. KayRena Pat and Halloran wrote: > hi all, just a note while I'm baking for the bake sale at tim's school--decided I should do it today so tues. night at 10 pm I don't say $#*@, I forgot to bake for weds. > > I have to take tim or somebody does--I'm gonna try to talk pat into it--to get measured for new orthotics tues. it never ends. > > the main reason I'm writing is this....the endo called and tim's growth hormone came up low--through th simple bloodwork, so I scheduled him for a series of 3 test--but not until march the soonest I could get in, for arginine,clonindine and crh the test takes 3 hours and results take 2 weeks to get, but if this comes back showiing the growth hormone low we are looking at shots--not something we want to do, but if it's best for him we'll do it. > > anyone had these tests? they said it may make him sleepy--and I'm hoping it will--he freaks out about things like this--the iv and all that. of course the hardest will be the one med by mouth. > > well, need to get back to my jobs, doing laundry too and just heard the dryer buzz. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 9, 2003 Report Share Posted December 9, 2003 the reason for the shots if he in fact needs them is a little of everything. but the main reason is so he's healthy and can grow to his potential. his two younger brothers are almost taller than him and 2 1/2 and 5 years younger than him. he has enough personalitiy I'm not really worried about the size and much as the health issues. welcome!! maria Re: hi all--growth > hi I just um signed up I guess for this today and am amazed that there is communication in my box here already. I guess I was unsure what to expect. I am wondering why choose to have the shots?? Is it just so the kids will not be so much shorter? is this for emotional reasons or is there physical reasons to do that? My son with charge is ten and two feet smaller then the kids in his class. but with how thin > he is I just cant imagine him being any taller. our dr today said that I know more about charge then he does. and I am wondering what else I should be looking at for him (wesley) . I asked the dr today if he would look more into charge because of bowl problems wes has Im wondering if they are connected at all does anyone have troubles with the kids with charge not controlling their bowls? I only found one other > mention of this on net. > KayRena > > Pat and Halloran wrote: > > > hi all, just a note while I'm baking for the bake sale at tim's school--decided I should do it today so tues. night at 10 pm I don't say $#*@, I forgot to bake for weds. > > > > I have to take tim or somebody does--I'm gonna try to talk pat into it--to get measured for new orthotics tues. it never ends. > > > > the main reason I'm writing is this....the endo called and tim's growth hormone came up low--through th simple bloodwork, so I scheduled him for a series of 3 test--but not until march the soonest I could get in, for arginine,clonindine and crh the test takes 3 hours and results take 2 weeks to get, but if this comes back showiing the growth hormone low we are looking at shots--not something we want to do, but if it's best for him we'll do it. > > > > anyone had these tests? they said it may make him sleepy--and I'm hoping it will--he freaks out about things like this--the iv and all that. of course the hardest will be the one med by mouth. > > > > well, need to get back to my jobs, doing laundry too and just heard the dryer buzz. > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 9, 2003 Report Share Posted December 9, 2003 maria sorry I am so dumb about this but what are the health issues related with the growth??? Is it so the insides have enough room or something else? I had not even heard of this shot thing tell looking for things on the internet about three days ago. my children younger then my charge son are also taller then him. as I see him next to other kids his age it shocks me how small he is. but I had never thought of it being an issue that could be helped. I knew it was part of charge and so just thought things would just be that way. to hear you say health reasons makes me concerned . like I said our Dr said I know more then he does about it and I dont know very much. I had never even heard of any children with charge older then my son tell I joined this yesterday. please give me any info you can on the matter would be greatly appreciated. KayRena mother of 10 yr. ChARGE ,7yr , 6yr, 3 yr. and one on the way all boys sofar Pat and Halloran wrote: > the reason for the shots if he in fact needs them is a little of everything. > but the main reason is so he's healthy and can grow to his potential. his > two younger brothers are almost taller than him and 2 1/2 and 5 years > younger than him. he has enough personalitiy I'm not really worried about > the size and much as the health issues. > > welcome!! > > maria > Re: hi all--growth > > > hi I just um signed up I guess for this today and am amazed that > there is communication in my box here already. I guess I was unsure > what to expect. I am wondering why choose to have the shots?? Is it > just so the kids will not be so much shorter? is this for emotional > reasons or is there physical reasons to do that? My son with charge > is ten and two feet smaller then the kids in his class. but with how > thin > > he is I just cant imagine him being any taller. our dr today said > that I know more about charge then he does. and I am wondering what > else I should be looking at for him (wesley) . I asked the dr today if > he would look more into charge because of bowl problems wes has Im > wondering if they are connected at all does anyone have troubles with > the kids with charge not controlling their bowls? I only found one > other > > mention of this on net. > > KayRena > > > > Pat and Halloran wrote: > > > > > hi all, just a note while I'm baking for the bake sale at tim's > school--decided I should do it today so tues. night at 10 pm I don't say > $#*@, I forgot to bake for weds. > > > > > > I have to take tim or somebody does--I'm gonna try to talk pat into > it--to get measured for new orthotics tues. it never ends. > > > > > > the main reason I'm writing is this....the endo called and tim's growth > hormone came up low--through th simple bloodwork, so I scheduled him for a > series of 3 test--but not until march the soonest I could get in, for > arginine,clonindine and crh the test takes 3 hours and results take 2 weeks > to get, but if this comes back showiing the growth hormone low we are > looking at shots--not something we want to do, but if it's best for him > we'll do it. > > > > > > anyone had these tests? they said it may make him sleepy--and I'm > hoping it will--he freaks out about things like this--the iv and all that. > of course the hardest will be the one med by mouth. > > > > > > well, need to get back to my jobs, doing laundry too and just heard the > dryer buzz. > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 9, 2003 Report Share Posted December 9, 2003 I may have mispoken--I'm not sure that there are major health issues, but I do know that puberty can be affected. I am new to this growth stuff too, I'm not sure if bone density is a concern, but I just want him to have whatever growth he is capable of ---even if he needs help. Timmy is 8 (8/15/95) he is between 46-48 inches and 45 pounds or there about. much smaller than kids his age--people think he is 6--luckily, at this point it doesn't bother him. hi s brothers almost 6 is 45-46 inches and 50 pounds, and littest brother who is 3 is 40 pounds and almost 40 inches. sorry if I worried you, I don't have all the info yet either... Re: hi all--growth > > > > > hi I just um signed up I guess for this today and am amazed that > > there is communication in my box here already. I guess I was unsure > > what to expect. I am wondering why choose to have the shots?? Is it > > just so the kids will not be so much shorter? is this for emotional > > reasons or is there physical reasons to do that? My son with charge > > is ten and two feet smaller then the kids in his class. but with how > > thin > > > he is I just cant imagine him being any taller. our dr today said > > that I know more about charge then he does. and I am wondering what > > else I should be looking at for him (wesley) . I asked the dr today if > > he would look more into charge because of bowl problems wes has Im > > wondering if they are connected at all does anyone have troubles with > > the kids with charge not controlling their bowls? I only found one > > other > > > mention of this on net. > > > KayRena > > > > > > Pat and Halloran wrote: > > > > > > > hi all, just a note while I'm baking for the bake sale at tim's > > school--decided I should do it today so tues. night at 10 pm I don't say > > $#*@, I forgot to bake for weds. > > > > > > > > I have to take tim or somebody does--I'm gonna try to talk pat into > > it--to get measured for new orthotics tues. it never ends. > > > > > > > > the main reason I'm writing is this....the endo called and tim's growth > > hormone came up low--through th simple bloodwork, so I scheduled him for a > > series of 3 test--but not until march the soonest I could get in, for > > arginine,clonindine and crh the test takes 3 hours and results take 2 weeks > > to get, but if this comes back showiing the growth hormone low we are > > looking at shots--not something we want to do, but if it's best for him > > we'll do it. > > > > > > > > anyone had these tests? they said it may make him sleepy--and I'm > > hoping it will--he freaks out about things like this--the iv and all that. > > of course the hardest will be the one med by mouth. > > > > > > > > well, need to get back to my jobs, doing laundry too and just heard the > > dryer buzz. > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 9, 2003 Report Share Posted December 9, 2003 maria your 8 year old is bigger then my 10 year old wes is about 45 inches tall and 42 lb. thanks for clarifying wonder if anyone else knows more. KayRena Pat and Halloran wrote: > I may have mispoken--I'm not sure that there are major health issues, but I > do know that puberty can be affected. I am new to this growth stuff too, > I'm not sure if bone density is a concern, but I just want him to have > whatever growth he is capable of ---even if he needs help. Timmy is 8 > (8/15/95) he is between 46-48 inches and 45 pounds or there about. much > smaller than kids his age--people think he is 6--luckily, at this point it > doesn't bother him. hi s brothers almost 6 is 45-46 inches and 50 pounds, > and littest brother who is 3 is 40 pounds and almost 40 inches. > > sorry if I worried you, I don't have all the info yet either... > > > Re: hi all--growth > > > > > > > hi I just um signed up I guess for this today and am amazed > that > > > there is communication in my box here already. I guess I was > unsure > > > what to expect. I am wondering why choose to have the shots?? Is > it > > > just so the kids will not be so much shorter? is this for emotional > > > reasons or is there physical reasons to do that? My son with > charge > > > is ten and two feet smaller then the kids in his class. but with > how > > > thin > > > > he is I just cant imagine him being any taller. our dr today > said > > > that I know more about charge then he does. and I am wondering what > > > else I should be looking at for him (wesley) . I asked the dr today > if > > > he would look more into charge because of bowl problems wes has Im > > > wondering if they are connected at all does anyone have troubles > with > > > the kids with charge not controlling their bowls? I only found one > > > other > > > > mention of this on net. > > > > KayRena > > > > > > > > Pat and Halloran wrote: > > > > > > > > > hi all, just a note while I'm baking for the bake sale at tim's > > > school--decided I should do it today so tues. night at 10 pm I don't > say > > > $#*@, I forgot to bake for weds. > > > > > > > > > > I have to take tim or somebody does--I'm gonna try to talk pat into > > > it--to get measured for new orthotics tues. it never ends. > > > > > > > > > > the main reason I'm writing is this....the endo called and tim's > growth > > > hormone came up low--through th simple bloodwork, so I scheduled him for > a > > > series of 3 test--but not until march the soonest I could get in, for > > > arginine,clonindine and crh the test takes 3 hours and results take 2 > weeks > > > to get, but if this comes back showiing the growth hormone low we are > > > looking at shots--not something we want to do, but if it's best for him > > > we'll do it. > > > > > > > > > > anyone had these tests? they said it may make him sleepy--and I'm > > > hoping it will--he freaks out about things like this--the iv and all > that. > > > of course the hardest will be the one med by mouth. > > > > > > > > > > well, need to get back to my jobs, doing laundry too and just heard > the > > > dryer buzz. > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 10, 2003 Report Share Posted December 10, 2003 KayRena- My understanding of the growth hormone issue is that it impacts puberty and size as well as muscle mass, strength, stamina, etc. When you consider that the entire body is impacted by hormone balances and growth -- that our muscles grow and develop as well as bones and organs and that all of these things change as we mature hormonally - then it makes sense. Until I attended a session at the conference and participated in some discussions here on the list, I had also thought only in terms of adult stature. I would not consider that a major issue after all of the other things my child has been through and continues to deal with. But when you think of all of the other ramifications, then it is worth looking into. One of the big " take-home " messages of the conference this year was " If your child does not have an endocrinologist yet, get one! " All of our CHARGErs should be followed by a knowledgable endocrinologist throughout life. My holdup has been finding that knowledgable doctor that I trust to follow my child appropriately. Michele W Aubrie's mom (6 yrs) CHaRgE and (12 yrs) Re: hi all--growth > > > > > > > hi I just um signed up I guess for this today and am amazed > that > > > there is communication in my box here already. I guess I was > unsure > > > what to expect. I am wondering why choose to have the shots?? Is > it > > > just so the kids will not be so much shorter? is this for emotional > > > reasons or is there physical reasons to do that? My son with > charge > > > is ten and two feet smaller then the kids in his class. but with > how > > > thin > > > > he is I just cant imagine him being any taller. our dr today > said > > > that I know more about charge then he does. and I am wondering what > > > else I should be looking at for him (wesley) . I asked the dr today > if > > > he would look more into charge because of bowl problems wes has Im > > > wondering if they are connected at all does anyone have troubles > with > > > the kids with charge not controlling their bowls? I only found one > > > other > > > > mention of this on net. > > > > KayRena > > > > > > > > Pat and Halloran wrote: > > > > > > > > > hi all, just a note while I'm baking for the bake sale at tim's > > > school--decided I should do it today so tues. night at 10 pm I don't > say > > > $#*@, I forgot to bake for weds. > > > > > > > > > > I have to take tim or somebody does--I'm gonna try to talk pat into > > > it--to get measured for new orthotics tues. it never ends. > > > > > > > > > > the main reason I'm writing is this....the endo called and tim's > growth > > > hormone came up low--through th simple bloodwork, so I scheduled him for > a > > > series of 3 test--but not until march the soonest I could get in, for > > > arginine,clonindine and crh the test takes 3 hours and results take 2 > weeks > > > to get, but if this comes back showiing the growth hormone low we are > > > looking at shots--not something we want to do, but if it's best for him > > > we'll do it. > > > > > > > > > > anyone had these tests? they said it may make him sleepy--and I'm > > > hoping it will--he freaks out about things like this--the iv and all > that. > > > of course the hardest will be the one med by mouth. > > > > > > > > > > well, need to get back to my jobs, doing laundry too and just heard > the > > > dryer buzz. > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 10, 2003 Report Share Posted December 10, 2003 KayRena, We had some bad experiences with Dr.'s while in Utah County. I'm curious, what is the name of Wes' pediatrician? If possible, try to hook up with some Dr.'s up at Primary Children's Hospital. They are awesome. DeAnn, Mother to Austin 8, 5, and CHARGEr Whitney 4 months. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 10, 2003 Report Share Posted December 10, 2003 ok here I show how out of it I am what is an endocrinologist? and how do I go about finding one??? thanks for your input this does make sense we have noticed there are lots of ways things in the body affect other things that some Drs. just dont seem to notice. or believe. I was told when my son was born that charge is always with the first born child but I see many here who have children older then their child with charge. so is this not a true statement from the Drs.? I know around here they know very little of charge I am thinking they know even less then I thought. KayRena mother of wes 10 CHARGE Jake 7 tristen6 zachary 3 and one on the way Michele Westmaas wrote: > KayRena- > My understanding of the growth hormone issue is that it impacts puberty and size as well as muscle mass, strength, stamina, etc. When you consider that the entire body is impacted by hormone balances and growth -- that our muscles grow and develop as well as bones and organs and that all of these things change as we mature hormonally - then it makes sense. Until I attended a session at the conference and participated in some discussions here on the list, I had also thought only in terms of adult stature. I would not consider that a major issue after all of the other things my child has been through and continues to deal with. But when you think of all of the other ramifications, then it is worth looking into. One of the big " take-home " messages of the conference this year was " If your child does not have an endocrinologist yet, get one! " All of our CHARGErs should be followed by a knowledgable endocrinologist throughout life. My holdup has been finding that knowledgable doctor that I trust to follow my child appropriately. > > Michele W > Aubrie's mom (6 yrs) CHaRgE and (12 yrs) > Re: hi all--growth > > > > > > > > > hi I just um signed up I guess for this today and am amazed > > that > > > > there is communication in my box here already. I guess I was > > unsure > > > > what to expect. I am wondering why choose to have the shots?? Is > > it > > > > just so the kids will not be so much shorter? is this for emotional > > > > reasons or is there physical reasons to do that? My son with > > charge > > > > is ten and two feet smaller then the kids in his class. but with > > how > > > > thin > > > > > he is I just cant imagine him being any taller. our dr today > > said > > > > that I know more about charge then he does. and I am wondering what > > > > else I should be looking at for him (wesley) . I asked the dr today > > if > > > > he would look more into charge because of bowl problems wes has Im > > > > wondering if they are connected at all does anyone have troubles > > with > > > > the kids with charge not controlling their bowls? I only found one > > > > other > > > > > mention of this on net. > > > > > KayRena > > > > > > > > > > Pat and Halloran wrote: > > > > > > > > > > > hi all, just a note while I'm baking for the bake sale at tim's > > > > school--decided I should do it today so tues. night at 10 pm I don't > > say > > > > $#*@, I forgot to bake for weds. > > > > > > > > > > > > I have to take tim or somebody does--I'm gonna try to talk pat into > > > > it--to get measured for new orthotics tues. it never ends. > > > > > > > > > > > > the main reason I'm writing is this....the endo called and tim's > > growth > > > > hormone came up low--through th simple bloodwork, so I scheduled him for > > a > > > > series of 3 test--but not until march the soonest I could get in, for > > > > arginine,clonindine and crh the test takes 3 hours and results take 2 > > weeks > > > > to get, but if this comes back showiing the growth hormone low we are > > > > looking at shots--not something we want to do, but if it's best for him > > > > we'll do it. > > > > > > > > > > > > anyone had these tests? they said it may make him sleepy--and I'm > > > > hoping it will--he freaks out about things like this--the iv and all > > that. > > > > of course the hardest will be the one med by mouth. > > > > > > > > > > > > well, need to get back to my jobs, doing laundry too and just heard > > the > > > > dryer buzz. > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 10, 2003 Report Share Posted December 10, 2003 Ok, first of all, CHARGE is *not* always in the first born child. I don't know where they would even get that bit of information. Endocrinologists study hormones. I would recommend asking your primary pediatrician or another one of your child's specialists that you trust for a referral to an endo who might be knowledgable about CHaRgE. Michele w Re: hi all--growth > > > > > > > > > hi I just um signed up I guess for this today and am amazed > > that > > > > there is communication in my box here already. I guess I was > > unsure > > > > what to expect. I am wondering why choose to have the shots?? Is > > it > > > > just so the kids will not be so much shorter? is this for emotional > > > > reasons or is there physical reasons to do that? My son with > > charge > > > > is ten and two feet smaller then the kids in his class. but with > > how > > > > thin > > > > > he is I just cant imagine him being any taller. our dr today > > said > > > > that I know more about charge then he does. and I am wondering what > > > > else I should be looking at for him (wesley) . I asked the dr today > > if > > > > he would look more into charge because of bowl problems wes has Im > > > > wondering if they are connected at all does anyone have troubles > > with > > > > the kids with charge not controlling their bowls? I only found one > > > > other > > > > > mention of this on net. > > > > > KayRena > > > > > > > > > > Pat and Halloran wrote: > > > > > > > > > > > hi all, just a note while I'm baking for the bake sale at tim's > > > > school--decided I should do it today so tues. night at 10 pm I don't > > say > > > > $#*@, I forgot to bake for weds. > > > > > > > > > > > > I have to take tim or somebody does--I'm gonna try to talk pat into > > > > it--to get measured for new orthotics tues. it never ends. > > > > > > > > > > > > the main reason I'm writing is this....the endo called and tim's > > growth > > > > hormone came up low--through th simple bloodwork, so I scheduled him for > > a > > > > series of 3 test--but not until march the soonest I could get in, for > > > > arginine,clonindine and crh the test takes 3 hours and results take 2 > > weeks > > > > to get, but if this comes back showiing the growth hormone low we are > > > > looking at shots--not something we want to do, but if it's best for him > > > > we'll do it. > > > > > > > > > > > > anyone had these tests? they said it may make him sleepy--and I'm > > > > hoping it will--he freaks out about things like this--the iv and all > > that. > > > > of course the hardest will be the one med by mouth. > > > > > > > > > > > > well, need to get back to my jobs, doing laundry too and just heard > > the > > > > dryer buzz. > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 10, 2003 Report Share Posted December 10, 2003 our primary care dr is a family practice dr . his name is DR Welch we are in touch with some Drs. up at PCMC. that is where his ENT and surgeons are. thanks KayRena wellsjdan@... wrote: > KayRena, We had some bad experiences with Dr.'s while in Utah County. I'm > curious, what is the name of Wes' pediatrician? If possible, try to hook up > with some Dr.'s up at Primary Children's Hospital. They are awesome. > > DeAnn, Mother to Austin 8, 5, and CHARGEr Whitney 4 months. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 11, 2003 Report Share Posted December 11, 2003 My son Terrell is 4 yrs old. He's 26 1/2 lbs and have been at that weight for months. He has a huge appetite eating everything in small portions. He's 32 ins tall, and personally i feel that he's not growing. At one time the doctors were thinking of reinserting a feeding tube, which i'm not for and any other alternative would be better for him, since he is at prek and is so very active. There has always been an issue with his growth, and until today I wasn't aware that there were others chargers with growth problems. A few months ago my son had some bone age tests done and some other blood work. the bone age came out normal and we had not received the bloodwork test as yet. He's seeing his pediatrician tomorrow and i will discuss this with her. Does any one know at what age is best for charges to start on growth hormone meds. Any other information would be greatly appreciated Thanks Therese mom of 4 yr old charger, 9 yr. old and 6 mths old Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 11, 2003 Report Share Posted December 11, 2003 Dr. Kim Blake's presentation at DbI reported that growth hormone therapy needs to be investigated in the first year of life, growth monitored by an endocrinologist and certainly looked at again during puberty. Parents have reported other benefits of replacement therapy such as increased energy levels as well. Many children with CHARGE have started on these growth hormones at a young age. http://www.cps.ca/english/CPSP/Abstract/abstractPuberty & Growth.htm A. Gloyn, Specialist Teacher Re: hi all--growth My son Terrell is 4 yrs old. He's 26 1/2 lbs and have been at that weight for months. He has a huge appetite eating everything in small portions. He's 32 ins tall, and personally i feel that he's not growing. At one time the doctors were thinking of reinserting a feeding tube, which i'm not for and any other alternative would be better for him, since he is at prek and is so very active. There has always been an issue with his growth, and until today I wasn't aware that there were others chargers with growth problems. A few months ago my son had some bone age tests done and some other blood work. the bone age came out normal and we had not received the bloodwork test as yet. He's seeing his pediatrician tomorrow and i will discuss this with her. Does any one know at what age is best for charges to start on growth hormone meds. Any other information would be greatly appreciated Thanks Therese mom of 4 yr old charger, 9 yr. old and 6 mths old Quote Link to comment Share on other sites More sharing options...
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