Guest guest Posted October 26, 1998 Report Share Posted October 26, 1998 Hey there.. Just thought I would throw in my 2 cents too. Maddie got really thin when her severe apnea started. Once we put her on CPAP she fattened up a bit (in CHARGE terms of course). It was amazing how much energy she was burning up at night just to breath. Glad we have crossed that bridge!!! Bibo Vaughn Mom of Clay-15, Maddie(CHARgE) - 11 & Philip-9 bibovaughn@... AOL IM bibommm ICQ Pager http://wwp.mirabilis.com/11128396 " Live Long and Prosper " Mr. Spock > > > >------------------------------------------------------------------------ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 26, 1998 Report Share Posted October 26, 1998 The endocrinologist in Auckland said poor growth may be due to chronic illness. The child puts all of its energy into fighting illness, that it has little left over for growth. He listed several things to consider. (1) abstructive apnia ( grew more after his toncils and adenoids were removed); (2) heart failure; (3) poor caloric intake; (4) immobilization; (5) muscle tone problems. Tim Hartshorne (father of ) Mt. Pleasant, MI JMurraybel@... wrote: > From: JMurraybel@... > > Hi Everyone, > I'm looking for some advise again!!! > Jack is still very small (16lb5oz & 69.5cms) and is now 15 1/2mths > old. He is > in proportion and does not look skinny.He is well below the 3rd > centile and I > asked his paediatrician what we could do to try and get him on the > chart. She > said that if we gave him exra feeds that would only make him fatter > but would > not make him grow any taller. I don't know that I agree with her.Jack > still > eats very little and I'm sure that if his nutritional intake was > increased he > would gain both weight and height.I just get so depressed about the > whole > feeding thing.I'm sorry ,I'm just feeling sorry for myself because > Jack has > had acold for over a week and is eating even less than normal.I know > that any > extra weight he put on last time will be lost. > What I really want to know is if extra feeds would increase his height > as well > as his weight? Anyone got any thoughts on this? > Thanks in advance > > Elaine mum to Elise(6yrs) & Jack (15 1/2mths)CHaRGE > Dumfries,Scotland > > ----------------- > ------------------------------------------------------ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 26, 1998 Report Share Posted October 26, 1998 Tim & , Thanks for your replies. Jack usually sleeps very well,around 11 hours at night and he also has a nap in the morning and another after lunch so I don't think lack of sleep has anything to do with his growth. I guess with Jack it's a combination of not enough calories and heart defects. Elaine mum to Elise(6yrs) & Jack(15 1/2mths)CHaRGE Dumfries,Scotland Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 26, 1998 Report Share Posted October 26, 1998 <<I think that if Jack was getting more calories, and nutrition and was growing in weight, it would only stand to reason that he would grow in height. >> Not necessarily..... Tim(13yo), who is 12 months and 6 days older than my daughter, (12yo), gets approximately 1500 cal/day vs her approx. 1200 (give or take) and is no where near her height and weight. We also take into account that she is far more active - most likely burning up many more calories than he does daily. is 5'1'' where Tim is only 4'1''. We have been giving him the higher calories for years - ever since she started passing him in height and weight when they were about age 2 and 3. He is, however, a good weight for his height - about 55 lbs. Tim is g-tube fed and does not experience reflux. Because of their close age we've been able to watch over the years how he has lagged further and further behind with height and weight gain. ....just my personal observation having 2 kids so close in age. Donna mom to Tim CHaRGE(13), (12), (8) and (4) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 26, 1998 Report Share Posted October 26, 1998 Donna, Voight here I was just wondering is Tim tube fed only?? I thought he also took food by mouth. Did he have a TEF too like Mark?? Still trying to keep everyone straight. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 27, 1998 Report Share Posted October 27, 1998 Tim-How does poor muscle tone contribute to slow growth/weight gain? Aubrie continues to have slow gains. We are monitoring her caloric intake which is beginning to get tricky as she takes more baby foods and less formula. Her heart condition is resolving well and she's had few illnesses. She has a setback in weight gain with each surgical procedure, but those are slowing down too. So, the only things left from the list you gave are muscle tone and immobilization. Her movement is limited only by her abilities unless you consider that she must be seated more often than usual due to feeding issues. This past month she gained about 11 ounces but grew over 1 inch in length. Any ideas? Michele mom to Aubrie (almost 11 mos and 15.8 lbs or so) CHargE and (7 yrs) IL westml@... > He listed several things to consider. > (1) abstructive apnia ( grew more after his toncils and adenoids > were removed); (2) heart failure; (3) poor caloric intake; (4) > immobilization; (5) muscle tone problems. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 27, 1998 Report Share Posted October 27, 1998 Michele, I'm not sure that it was a complete list - just examples. I believe the muscle tone problems are related to immobilization. But my understanding was that any significant health problems could cause growth problems. Of course there can also be thyroid and g rowth hormone problems as well. We also found with that his growth would vary so that he would start to catch up a bit, and then would fall off and get the failure to thrive dx again. Then we would adjusted his calories, and he would start to gain again. Clearly, growth is a complex problem, and one we are all going to grapple with. Tim Hartshorne (father of ) Michele Westmaas wrote: > > > Tim-How does poor muscle tone contribute to slow growth/weight gain? > Aubrie continues to have slow gains. We are monitoring her caloric > intake which is beginning to get tricky as she takes more baby foods > and less formula. Her heart condition is resolving well and she's had > few illnesses. She has a setback in weight gain with each surgical > procedure, but those are slowing down too. So, the only things left > from the list you gave are muscle tone and immobilization. Her > movement is limited only by her abilities unless you consider that she > must be seated more often than usual due to feeding issues. This past > month she gained about 11 ounces but grew over 1 inch in length. Any > ideas? > > Michele > mom to Aubrie (almost 11 mos and 15.8 lbs or so) CHargE and (7 > yrs) > IL > westml@... > >> He listed several things to consider. >> (1) abstructive apnia ( grew more after his toncils and adenoids >> were removed); (2) heart failure; (3) poor caloric intake; (4) >> immobilization; (5) muscle tone problems. >> > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 27, 1998 Report Share Posted October 27, 1998 , Tim is tube fed only - for his general nutrition, that is. He will eat different foods but...he could never thrive on what he eats. He is so inconsistent. Some days he does good, some days not so good. Tim never had a TEF. We're just STILL dealing with issues from forever ago. He had his trach for 5 years, " uncoordinated swallow " , cleft lip/palate (repaired) and a whole history of professionals working with him who had no idea what to do with him. He'd take two steps forward then we'd get a new therapist and he would go 3 steps back. Actually even had to get a lawyer one year when he was dropped from his speech program cuz as the " professional therapist " told us after coming back from some conference " don't feed a CHARGE kid - they aspirate and will never learn to eat " . Sure have met some dopey people over the who think with their tailends. We won the suit eventually but Tim lost a whole year of therapy while we battled the school. Hope I cleared up a bit more of " Tim's Story " for you. Ask anytime. Donna mom to Tim (13), (12), (8) and (4) HamiltonSq. NJ In a message dated 10/26/98 10:05:56 PM, you wrote: << Donna, Voight here I was just wondering is Tim tube fed only?? I thought he also took food by mouth. Did he have a TEF too like Mark?? Still trying to keep everyone straight. >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 29, 1998 Report Share Posted October 29, 1998 Donna, Do you believe how ignorant some of these people are??? Mark almost died several times from aspiration pneumonias and he EATS now!! He still has to have meats ground (which some people forget- 2 emergency EGD's this year !!!!) He eats very well and had seconds of potatoes last night, We have to use alot of condiments for him to make food moist but he's eating. One of his favorites is Porterhouse steak with ketchup We thought we'd never see the day. Mark had alot of swallowing difficulties which he's somehow overcome........on his own in my opinion. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 29, 1998 Report Share Posted October 29, 1998 , If you don't mind me asking....how is Mark in regards to weight and height? We just started Tim on Growth Hormone shots (Nutropi AQ) about 3 1/2 weeks ago. After waiting years (as recommended by our docs) and watching this kid plateau with his height and weight, and understanding that we should take into account his many surgeries (including 3 open -heart), his g-tube feeds, his slower mobility (when he was very young) we saw the obvious that he was very delayed in growth. We not only want to help him reach his potential with height and weight but our other main concerns are bone density and muscle mass. We're hoping that with the use of the Nutropin that we can give him what his body is lacking. Regarding Mark's eating.......it's that always the way. Sometimes nothing we do seems to motivate. It seems to come from the child himself. Atta boy Mark !! Donna mom to Tim (13) (12) nicole (8) and (4) Hamilton Sq, NJ donna@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 30, 1998 Report Share Posted October 30, 1998 Mark! Congrats on the growth...hope will catch up with you..she is still pretty little for 13 ..not yet 5' and 78lbs. Take care and have a wonderful weekend! Jackie Kenley Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 30, 1998 Report Share Posted October 30, 1998 , has taken any hormones for teen growth? My is only 11 1/2, but he only weighs about 60# and is about 60 " I think, or less. I am expecting to give him testosterone when he hits wannabe puberty? Thanks, Barbra Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 30, 1998 Report Share Posted October 30, 1998 Jackie Kenley wrote: > Mark! > Congrats on the growth...hope will catch up with you..she is still > pretty little for 13 ..not yet 5' and 78lbs. Teens: Let's hear it for those growing teens! My son is 16 1/2 y.o and measures in at " almost " 5' 4 " and 98 lbs. Every time we go to one of his docs (and there's many) they look at him in surprise. He's even beginning to fill out across the chest and shoulders. Yeah!! All this and he was only about 13 - 14 lbs at one year. -- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 31, 1998 Report Share Posted October 31, 1998 BMousouris@... wrote: > > From: BMousouris@... > > , has taken any hormones for teen growth? My is only 11 > 1/2, but he only weighs about 60# and is about 60 " I think, or less. I am > expecting to give him testosterone when he hits wannabe puberty? Thanks, > Barbra > > ------------------------------------------------------------------------ > Did you ever want to participate in video chats, send real-time video > and video mail? Now you can, AND at a super low price--ONLY $89.95! > http://orders.xoom.com/zvc/emzvc921 Barbra, had a series of testosterone shots (4 of them) when he was about 18 months old. They wanted to see if the testees would drop and also wanted to see if there would be any response in change in size. Not much response. He tested low-normal for growth hormone so was not a candidate for that -- he has followed the lower 3% of the growth chart for all of his life until recently when they were hoping for puberty. Growth fell of and puberty did not happen. At 15 y.o. they gave him another round of testosterone (4 shots) hoping to " kick-start " puberty. He would grow and things would change, but only while taking the shots. So now at 16 1/2 y.o. they have started him on the testosterone patch (Kline Beechem's Androderm). He will go to the Endocrinologist on November 18 -- after 3months on the patch -- so they can check him out. He has more hair, including a small mustache (but because of the cleft scar it is only on one side of his lip), I see other changes but not great. It is beginning to look like he will have to stay on the testosterone long term to effect any substantial changes. He hates the patch -- it itches and leaves a rash, so we may have to consider shots. Yuk! Sorry to go on so long, but this has gone on so long. We may be coming down to Santa Barbara in December for Xmas, maybe we can get together. -- Quote Link to comment Share on other sites More sharing options...
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