Guest guest Posted October 17, 2006 Report Share Posted October 17, 2006 Hi, My daughter, , is 9 years old. Her brother is 5. He is taller and bigger. I was talking to 's endocrinologist yestarday. She has been following 's progress for a while. Her IGF-1 factors have always been low but within normal. Her bone age is 6 1/2. Her endo left the decision to use growth hormone or a variation (specific to IGF-1 I think) in our hands. She thinks it may be warrented here but she doesn't know. She is always concerned about 's nutrition. Always blaming nutrition for her slow growth. My concern is we have balanced her calories and nutrician and 's growth remains on the same curve. I really don't know what to do or even what questions to ask. Please help fromthose who have been there and from those who aren't....what questions shloud I be asking? Thanks, Colleen Feather Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 17, 2006 Report Share Posted October 17, 2006 Colleen, Eva is much younger then your daughter and the doctors are worried about her weight also and she was on this diet they wanted me to put her on and she gained the same small amount all the time. Well now I am looking at calories of everything and making sure she has the highest and we will see if that works. Today she has so far had 2 8oz bottles of pediasure which are about 270calories each, a 150 calorie container of yogurt, and 120 calorie jar of baby food. So I am going to keep this up and see how she does. Good luck!! Hugs, Crystal mom to (10 born 8 weeks early) (3), And Eva (18 month old CHARGEr) wife to Dan in Illinois > > Hi, > > My daughter, , is 9 years old. Her brother is 5. He is taller and bigger. I was talking to 's endocrinologist yestarday. She has been following 's progress for a while. Her IGF-1 factors have always been low but within normal. Her bone age is 6 1/2. Her endo left the decision to use growth hormone or a variation (specific to IGF-1 I think) in our hands. She thinks it may be warrented here but she doesn't know. She is always concerned about 's nutrition. Always blaming nutrition for her slow growth. My concern is we have balanced her calories and nutrician and 's growth remains on the same curve. I really don't know what to do or even what questions to ask. Please help fromthose who have been there and from those who aren't....what questions shloud I be asking? > > Thanks, > Colleen Feather > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 17, 2006 Report Share Posted October 17, 2006 Hi! I can tell you about our experience with growth hormone for . He started on it when he was 6, his weight to height ratio had always been on the lower side but good and his hormone levels were like your daughters low buti in normal ranges. The Endo who has NO experience with CHARGE thought that it would be a good idea to start. I hated it. To give my own kid shots was REALLY hard. I've done hard.. 2 years with a trach & no nursing, I've gone into the OR & watched is bronchoscopy, lived in a PICU for 3 months... etc so I'm not a wimp but to see that little face crumple because I hurt him was emotionally wrenching for me. did grow some & did gain about 10lbs but the endo was NEVER happy. She apparently thought that the shots would make him shoot up at a " normal " rate. I could tell a big difference, he was really growing a lot for him though. BUT he has scolosis & the GHT made his curve way worse so they ordered a brace. The brace was a freaking NIGHTMARE that hated & made him throw up from squishing his tummy. Plus again everytime we went to the Endo she was " less than impressed " with his growth so I really started questioning what we were doing. So I made the decision to stop because if it was not getting him enough growth than why make his back worse & our relationship worse, KWIM? Anyway that's our experience... not a good one. Moriah http://moriahbettencourt.typepad.com > > Hi, > > My daughter, , is 9 years old. Her brother is 5. He is taller and bigger. I was talking to 's endocrinologist yestarday. She has been following 's progress for a while. Her IGF-1 factors have always been low but within normal. Her bone age is 6 1/2. Her endo left the decision to use growth hormone or a variation (specific to IGF-1 I think) in our hands. She thinks it may be warrented here but she doesn't know. She is always concerned about 's nutrition. Always blaming nutrition for her slow growth. My concern is we have balanced her calories and nutrician and 's growth remains on the same curve. I really don't know what to do or even what questions to ask. Please help fromthose who have been there and from those who aren't....what questions shloud I be asking? > > Thanks, > Colleen Feather > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 18, 2006 Report Share Posted October 18, 2006 Cedie and Eva are close in age. She is also having trouble with weight gain. More discerning is her lack of growing in heigth. She is the exact weight and heigth that she was when she was discharged from the hospital back on 5/31/06. She was tested for growth hormone levels and such in September and we are waiting on those results. The endocronologist said that depending on those results, we may have to go to the metabolic unit at the hospital for a more in depth 3 hour test, as well as discuss growth hormone therapy. I can't remember right now what the test is called. As with all of her problems, I take things one step at a time (otherwise I'd lose my mind!). Another complication in Cedie's case is her lungs and the effect volume has on them. She is still vent dependent. She has a problem with fluid retention so she takes a diertic regularly. She also has reflux issues. When ever nutritian tries to up her volume intake (she currently takes 110 cc with 20 cc water flush every 3 hours, 7 x per day) she has trouble breathing and she just can't handle it. Has anyone done the growth hormone therapy as young as Cedie? Mock- mom to Dylan (5) and Cedie (16 mth CHARgEr) > > > > Hi, > > > > My daughter, , is 9 years old. Her brother is 5. He is > taller and bigger. I was talking to 's endocrinologist > yestarday. She has been following 's progress for a while. > Her IGF-1 factors have always been low but within normal. Her bone > age is 6 1/2. Her endo left the decision to use growth hormone or a > variation (specific to IGF-1 I think) in our hands. She thinks it > may be warrented here but she doesn't know. She is always concerned > about 's nutrition. Always blaming nutrition for her slow > growth. My concern is we have balanced her calories and nutrician > and 's growth remains on the same curve. I really don't know > what to do or even what questions to ask. Please help fromthose who > have been there and from those who aren't....what questions shloud I > be asking? > > > > Thanks, > > Colleen Feather > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 19, 2006 Report Share Posted October 19, 2006 Colleen- What are 's height and weight now? Just curious. I think the girls have been running neck and neck. Our endo is not concerned right now - but still monitoring growth every 6 months - because Aubrie grew pretty well this past summer. She's now 4 ft and 51 lbs. Still quite tiny in my opinion - a head below her peers - but she is starting to get a more mature look about her. At the Wolfgang Puck event, someone actually guessed her age correctly! I don't think that's ever happened! Michele W Aubrie's mom (she'll be 9 on Nov 29) _____ From: CHARGE [mailto:CHARGE ] On Behalf Of CHRGmom@... Sent: Tuesday, October 17, 2006 1:43 PM To: CHARGE Listserve Subject: Growth Hormone Hi, My daughter, , is 9 years old. Her brother is 5. He is taller and bigger. I was talking to 's endocrinologist yestarday. She has been following 's progress for a while. Her IGF-1 factors have always been low but within normal. Her bone age is 6 1/2. Her endo left the decision to use growth hormone or a variation (specific to IGF-1 I think) in our hands. She thinks it may be warrented here but she doesn't know. She is always concerned about 's nutrition. Always blaming nutrition for her slow growth. My concern is we have balanced her calories and nutrician and 's growth remains on the same curve. I really don't know what to do or even what questions to ask. Please help fromthose who have been there and from those who aren't....what questions shloud I be asking? Thanks, Colleen Feather Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 19, 2006 Report Share Posted October 19, 2006 just for comparison, (with CHARGE) was a little over four feet tall when he entered ninth grade. Our middle son Elliot (medically unremarkable) is typically among the five shortest in his class, and he entered ninth grade at a little over five feet tall. was a few inches shy of four feet tall by fifth grade..... ) yuka Growth Hormone Hi, My daughter, , is 9 years old. Her brother is 5. He is taller and bigger. I was talking to 's endocrinologist yestarday. She has been following 's progress for a while. Her IGF-1 factors have always been low but within normal. Her bone age is 6 1/2. Her endo left the decision to use growth hormone or a variation (specific to IGF-1 I think) in our hands. She thinks it may be warrented here but she doesn't know. She is always concerned about 's nutrition. Always blaming nutrition for her slow growth. My concern is we have balanced her calories and nutrician and 's growth remains on the same curve. I really don't know what to do or even what questions to ask. Please help fromthose who have been there and from those who aren't....what questions shloud I be asking? Thanks, Colleen Feather Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 19, 2006 Report Share Posted October 19, 2006 Yuka- Thanks for the numbers. I think that's why our endo is not terribly concerned. Aubrie is small - the smallest in her class - but no longer below the charts. For a girl, being petite is ok so I'm not too hung up on it as far as growth. But I do wonder sometimes how she'd benefit in other ways - the stamina etc that you guys have talked about. But - there's the scoliosis complication to consider. Right now, I'm terrified that a growth spurt will bring on complications there. I can't handle one more " thing " right now. DJ's mom is petite so Aubrie will be able to wear her wedding gown one day - if she doesn't grow too much. Michele W _____ From: CHARGE [mailto:CHARGE ] On Behalf Of Yuka Persico Sent: Thursday, October 19, 2006 2:10 PM To: CHARGE Subject: Re: Growth Hormone just for comparison, (with CHARGE) was a little over four feet tall when he entered ninth grade. Our middle son Elliot (medically unremarkable) is typically among the five shortest in his class, and he entered ninth grade at a little over five feet tall. was a few inches shy of four feet tall by fifth grade..... ) yuka Growth Hormone Hi, My daughter, , is 9 years old. Her brother is 5. He is taller and bigger. I was talking to 's endocrinologist yestarday. She has been following 's progress for a while. Her IGF-1 factors have always been low but within normal. Her bone age is 6 1/2. Her endo left the decision to use growth hormone or a variation (specific to IGF-1 I think) in our hands. She thinks it may be warrented here but she doesn't know. She is always concerned about 's nutrition. Always blaming nutrition for her slow growth. My concern is we have balanced her calories and nutrician and 's growth remains on the same curve. I really don't know what to do or even what questions to ask. Please help fromthose who have been there and from those who aren't....what questions shloud I be asking? Thanks, Colleen Feather Quote Link to comment Share on other sites More sharing options...
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