Guest guest Posted December 18, 2003 Report Share Posted December 18, 2003 Hi, was just looking at your daughters file.Isn't she beautiful! Your experience mirrors mine with my daughter Imogen almost identically.She was born almost full term weighing 2lbs 13oz. I had to go through the docs telling me my placenta was failing in which case my baby would die. Then that she had an awful chromosome abnormality which meant she was 'incompatable with life'! But she is now 6....yes she is tiny...12-24 month clothes...but she is happy, healthy,full of life,walking and talking well.(her tone is somewhat highpitched but that's cos her voicebox is small...will improve as she grows)SHE EATS!!! she didn't until she was 3 and a half but the tubes are now a distant memory. She goes to mainstream school with her older brother and sister.She only has mild learning difficulties.Seems she's in the 30% of RSS kids who have those...but they are slight and she progresses well. She has no health problems, we only have to see our consultant once a year now....gone are the days of endless appointments with different people...and she is an absolute delight....everybody loves her....very popular with her classmates (well, she's a living doll isn't she!) and she is quite a celebrity within the whole school! Good luck with ..and don't worry..the problems will lessen and it's going to be ok. Eileen xx Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 20, 2003 Report Share Posted December 20, 2003 Hi Eileen, Thank you for your post. I have to admit to being more of a 'reader' on this board than a 'poster' and have therefore been following your recent posts about Imogen with great interest. As for her start in life, it certainly does sound very smiliar to 's and I see quite a few other people have posted to say the same. I do sometimes wonder if 's lungs would have been stronger if she had been 'kept in' a bit longer, as she seems to suffer a lot of coughs, bronchitis, colds and possible asthma now, but I am still very happy that - despite the somewhat uusal pregnancy and 'birth' - is with us today. She is now 21mos old, weighs 15lbs 7oz and is 72cm high. She is doing well physically, walking about and relatively strong, and mentally she still seems spot-on - using about 50 words and generally making lots of noise! She has had a lot of colds this year - 3 bad ones since October - and this has affected her eating and weight gain, however when she is better, she still eats OK. I do sometimes wonder if she may have to have a g-tube eventually, but for the moment, her dietician is just keeping a close eye on her eating/weight. When did Imogen have a g-tube placed? And when did she have it removed? I see that a lot of RSS children do have them, so we are preared for this possibility, and they do seems to help weight gain. We'll just have to waitand see with ... Well, thanks again for posting. Here's wishing you a VERY happy Christmas - to you, and everyone on this board. With love, Rae (mum to , RSS, 21mos, 15lbs 7ox, 72cm, Pulmnicort & Salbutamol (asthma treatments) > Hi, was just looking at your daughters file.Isn't she beautiful! > Your experience mirrors mine with my daughter Imogen almost > identically.She was born almost full term weighing 2lbs 13oz. I had > to go through the docs telling me my placenta was failing in which > case my baby would die. Then that she had an awful chromosome > abnormality which meant she was 'incompatable with life'! > But she is now 6....yes she is tiny...12-24 month clothes...but she > is happy, healthy,full of life,walking and talking well.(her tone is > somewhat highpitched but that's cos her voicebox is small...will > improve as she grows)SHE EATS!!! she didn't until she was 3 and a > half but the tubes are now a distant memory. She goes to mainstream > school with her older brother and sister.She only has mild learning > difficulties.Seems she's in the 30% of RSS kids who have those...but > they are slight and she progresses well. > She has no health problems, we only have to see our consultant once > a year now....gone are the days of endless appointments with > different people...and she is an absolute delight....everybody loves > her....very popular with her classmates (well, she's a living doll > isn't she!) and she is quite a celebrity within the whole school! > Good luck with ..and don't worry..the problems will lessen and > it's going to be ok. > Eileen xx Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 21, 2003 Report Share Posted December 21, 2003 Hi Rae.....thanks for your message. is a very good weight I think! Imogen doesn't weigh much more than that at 6 years! Sometimes I think us RSS mums have to accept the fact that our kids are different and they really can't attain the weight of 'normal' kids their own age and to try and force them to achieve this is useless and distressing for all concerned i.e, the vomiting after each pump feed etc...why do they vomit? because their tiny tummies can't take the about of stuff the nutritionists want us to pump into them to try and make them 'normal' But our kids ARE normal...they are normal perfect RSS kids and that's the way they are supposed to be! Here speaks a veteran of tubes and injections and vomiting etc who now has a wonderful little girl who is free of all those things because we withdrew them . She now knows what hunger is...she didn't before cos she was always pumped to the gills with sodding Nutrini!!! OK...she's thin,most RSS kids are...but she eats....maybe not loads...but she eats...and she's happy and healthy...and that's all we care about. Can't be bothered to moniter her weight and height anymore....she'll grow as tall as she'll grow and that's that!We did measure her today tho;....cos everyone knows exactly what their kids height is and we don't...but for the record she's 36 inches.....about 16lbs. Sorry Rae.....that was a bit of a rant!! She had the g tube put in at 16 months....she started eating when she was 3 and a bit.....her consultant paedo said to leave the tube in for 3 months to make sure she didn't lose weight.....she didn't lose so out came the tube when she was 3 and a half. What rejoicing there was!!! Try and resist the tube if you can. Immi had it cos she wouldn't eat AT ALL. best of luck... Eileen x Hi Eileen, Thank you for your post. I have to admit to being more of a 'reader' on this board than a 'poster' and have therefore been following your recent posts about Imogen with great interest. As for her start in life, it certainly does sound very smiliar to 's and I see quite a few other people have posted to say the same. I do sometimes wonder if 's lungs would have been stronger if she had been 'kept in' a bit longer, as she seems to suffer a lot of coughs, bronchitis, colds and possible asthma now, but I am still very happy that - despite the somewhat uusal pregnancy and 'birth' - is with us today. She is now 21mos old, weighs 15lbs 7oz and is 72cm high. She is doing well physically, walking about and relatively strong, and mentally she still seems spot-on - using about 50 words and generally making lots of noise! She has had a lot of colds this year - 3 bad ones since October - and this has affected her eating and weight gain, however when she is better, she still eats OK. I do sometimes wonder if she may have to have a g-tube eventually, but for the moment, her dietician is just keeping a close eye on her eating/weight. When did Imogen have a g-tube placed? And when did she have it removed? I see that a lot of RSS children do have them, so we are preared for this possibility, and they do seems to help weight gain. We'll just have to waitand see with ... Well, thanks again for posting. Here's wishing you a VERY happy Christmas - to you, and everyone on this board. With love, Rae (mum to , RSS, 21mos, 15lbs 7ox, 72cm, Pulmnicort & Salbutamol (asthma treatments) > Hi, was just looking at your daughters file.Isn't she beautiful! > Your experience mirrors mine with my daughter Imogen almost > identically.She was born almost full term weighing 2lbs 13oz. I had > to go through the docs telling me my placenta was failing in which > case my baby would die. Then that she had an awful chromosome > abnormality which meant she was 'incompatable with life'! > But she is now 6....yes she is tiny...12-24 month clothes...but she > is happy, healthy,full of life,walking and talking well.(her tone is > somewhat highpitched but that's cos her voicebox is small...will > improve as she grows)SHE EATS!!! she didn't until she was 3 and a > half but the tubes are now a distant memory. She goes to mainstream > school with her older brother and sister.She only has mild learning > difficulties.Seems she's in the 30% of RSS kids who have those...but > they are slight and she progresses well. > She has no health problems, we only have to see our consultant once > a year now....gone are the days of endless appointments with > different people...and she is an absolute delight....everybody loves > her....very popular with her classmates (well, she's a living doll > isn't she!) and she is quite a celebrity within the whole school! > Good luck with ..and don't worry..the problems will lessen and > it's going to be ok. > Eileen xx --------------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 21, 2003 Report Share Posted December 21, 2003 In reading your message I can tell that you and your family are at peace with all of your decisions and Imogen is a very lucky girl! I am curious about something. You mentioned her birth weight was around 2 and 1/2 lbs and that she is now about 16lbs and 36 in. If she had a gtube for nearly 2 years, did her growth " catch up " at all while she was tube fed? Did she make larger weight gains than before? My daughter has only been on her tube for 8 weeks and already she has gained over 4.5lbs (YEAH!). I was just curious about Imogen. I can't wait to see pics of this " fairy " !. Dayna, Mom to Alyssa, 2 and now over 20lbs and 32.5in. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 21, 2003 Report Share Posted December 21, 2003 If she had a gtube >for nearly 2 years, did her growth " catch up " at all while she was tube fed? > Did she make larger weight gains than before? My daughter has only been on >her tube for 8 weeks and already she has gained over 4.5lbs (YEAH!). I was >just curious about Imogen. I'm thinking that there are 2 things which have made Tim's tube feedings make such a difference (we did this the month before he turned 7 years old and he went from 21 pounds to 45 pounds and grew over half a foot now that he's 8 and a half) - 1) the fact that we started growth hormone at the same time, so that his body could use the extra calories (I had found an article on how it helped children with another syndrome who had less than 1% weight to height to thrive with more muscle and bone mass) and 2) the fact that we had a fundo put in with the g-tube. I didn't want the fundo without the growth hormone, because I figured from experience with ng feeds that his body really wouldn't use the extra calories, but I didn't want the g-tube without a fundo because his gag reflex was getting so hyperactive that even a big cough would cause him to throw up a meal. I was not wanting to change him - he asked for a shot to make him grow - even adults kept giggling about how cute and tiny he was, and perhaps this gets to a boy more at a certain age... Inga Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 22, 2003 Report Share Posted December 22, 2003 Hi Inga.......yes the tube did make Imogen put on some weight temporarily.....but it was due to the 'forced feeding'! She's back to her natural RSS thiness now which is the way she's meant to be. As for the height...I can see where you're coming from (have you 2 children with RSS or have I got mixed up?) I suppose we are coasting at the moment because Imogen is quite happy and it is more acceptable for girls to be small than boys isn't it! I know that's not fair. So I can understand your son wanting the hormone. Maybe in a couple of years we will ask Imogen whether she wants to have the gh treatment again. Explaining the possible side effects etc. The thing with Imogen is because she is SO SMALL...no amount of growth hormone will make her anywhere near normal height anyway. So I sometimes wonder if the right thing to do is just to let her develop naturally...explaining her condition to her as she gets older and teaching her how to deal with the people who stare and make comments and at the end of the day to say to her that she is just very short...THAT'S ALL! There are so many worse conditions our kids could have. Hope I'm making sense! Eileen Inga ihughes@...> wrote: If she had a gtube >for nearly 2 years, did her growth " catch up " at all while she was tube fed? > Did she make larger weight gains than before? My daughter has only been on >her tube for 8 weeks and already she has gained over 4.5lbs (YEAH!). I was >just curious about Imogen. I'm thinking that there are 2 things which have made Tim's tube feedings make such a difference (we did this the month before he turned 7 years old and he went from 21 pounds to 45 pounds and grew over half a foot now that he's 8 and a half) - 1) the fact that we started growth hormone at the same time, so that his body could use the extra calories (I had found an article on how it helped children with another syndrome who had less than 1% weight to height to thrive with more muscle and bone mass) and 2) the fact that we had a fundo put in with the g-tube. I didn't want the fundo without the growth hormone, because I figured from experience with ng feeds that his body really wouldn't use the extra calories, but I didn't want the g-tube without a fundo because his gag reflex was getting so hyperactive that even a big cough would cause him to throw up a meal. I was not wanting to change him - he asked for a shot to make him grow - even adults kept giggling about how cute and tiny he was, and perhaps this gets to a boy more at a certain age... Inga Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 22, 2003 Report Share Posted December 22, 2003 Hi Dayna....she did put some weight on when she was tube fed......but I felt it was an unatural weight gain as tube feeding is basically force feeding. I also think this 'catch up' thing is a bit of a myth...RSS children never really catch up...they are meant to be so much shorter than average and tho I'm sure gh treatment helps it's not a miracle cure. There is no cure. As soon as Imogen came off the tube her weight reverted to what it is meant to be for her....but we would rather her be a bit on the thin side than have that horrid tube back! Hope this makes sense! I don't mean to be negative...I think it's realism. We are just so proud of Imogen just as she is and evryone adores her and she mostly gets positive comments wherever she goes...the ones who aren't positive we just disregard as ignorant people. Of course if in a few years Imogen becomes desperatley unhappy with her height we may have to try hormone treatmeant again...but we will have to explain everything to her...the fact that it could cause heart problems in later life etc etc.....but it will be her decision. Regards Eileen Dayna Carney daycarney@...> wrote: In reading your message I can tell that you and your family are at peace with all of your decisions and Imogen is a very lucky girl! I am curious about something. You mentioned her birth weight was around 2 and 1/2 lbs and that she is now about 16lbs and 36 in. If she had a gtube for nearly 2 years, did her growth " catch up " at all while she was tube fed? Did she make larger weight gains than before? My daughter has only been on her tube for 8 weeks and already she has gained over 4.5lbs (YEAH!). I was just curious about Imogen. I can't wait to see pics of this " fairy " !. Dayna, Mom to Alyssa, 2 and now over 20lbs and 32.5in. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 22, 2003 Report Share Posted December 22, 2003 Tim needed the GH for the tube feeding to make a difference - his body without it is also programmed to be very small. I only have one with RSS, and he was 3lbs 5 ounces taken 1 week before his due date. I think adding Udo's oil to his medicine dropper feeds helped us to get him to a whopping 21 pounds the month before his 7th bday - and that was when he was healthy. That was also a big concern for me - whenever he had a tummy bug, he had to go to ER because of his thinness making him at very high risk of dangerous dehydration. And you'd be surprised - I didn't think Tim would grow SO well because he was quite small - still wearing 2Ts just before his 7th bday (and less than a year old around the waist!) - and now he's about the size of a normal 6 year old height and weight less than 2 years later! The combination of the GH, the tube feeds, the fundoplacation, the oil, the pump, and tons of prayers from a whole lot of people (the latter definitely being the most important!!!) really helped him grow wonderfully! So I'll be praying for you. Maybe this is the path the Lord has chosen for Imogen, and I had thought that was the case for for years. But anything is possible if it's God will for her. I'm glad to hear that she is so content - that's great no matter what size you are! Inga At 11:56 AM 12/22/2003 +0000, you wrote: >Hi Inga.......yes the tube did make Imogen put on some weight >temporarily.....but it was due to the 'forced feeding'! She's back to her >natural RSS thiness now which is the way she's meant to be. As for the >height...I can see where you're coming from (have you 2 children with RSS or >have I got mixed up?) I suppose we are coasting at the moment because Imogen >is quite happy and it is more acceptable for girls to be small than boys >isn't it! I know that's not fair. So I can understand your son wanting the >hormone. Maybe in a couple of years we will ask Imogen whether she wants to >have the gh treatment again. Explaining the possible side effects etc. The >thing with Imogen is because she is SO SMALL...no amount of growth hormone >will make her anywhere near normal height anyway. So I sometimes wonder if >the right thing to do is just to let her develop naturally...explaining her >condition to her as she gets older and teaching her how to deal with the >people who stare and make comm! > ents and > at the end of the day to say to her that she is just very short...THAT'S >ALL! There are so many worse conditions our kids could have. >Hope I'm making sense! >Eileen > > >Inga ihughes@...> wrote: >If she had a gtube >>for nearly 2 years, did her growth " catch up " at all while she was tube fed? >> Did she make larger weight gains than before? My daughter has only been on >>her tube for 8 weeks and already she has gained over 4.5lbs (YEAH!). I was >>just curious about Imogen. > >I'm thinking that there are 2 things which have made Tim's tube feedings >make such a difference (we did this the month before he turned 7 years old >and he went from 21 pounds to 45 pounds and grew over half a foot now that >he's 8 and a half) - 1) the fact that we started growth hormone at the same >time, so that his body could use the extra calories (I had found an article >on how it helped children with another syndrome who had less than 1% weight >to height to thrive with more muscle and bone mass) and 2) the fact that we >had a fundo put in with the g-tube. I didn't want the fundo without the >growth hormone, because I figured from experience with ng feeds that his >body really wouldn't use the extra calories, but I didn't want the g-tube >without a fundo because his gag reflex was getting so hyperactive that even >a big cough would cause him to throw up a meal. > >I was not wanting to change him - he asked for a shot to make him grow - >even adults kept giggling about how cute and tiny he was, and perhaps this >gets to a boy more at a certain age... > >Inga > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 22, 2003 Report Share Posted December 22, 2003 At 12:04 PM 12/22/2003 +0000, you wrote: >Hi Dayna....she did put some weight on when she was tube fed......but I felt >it was an unatural weight gain as tube feeding is basically force feeding. I >also think this 'catch up' thing is a bit of a myth...RSS children never >really catch up...they are meant to be so much shorter than average and tho >I'm sure gh treatment helps it's not a miracle cure. There is no cure. As >soon as Imogen came off the tube her weight reverted to what it is meant to >be for her....but we would rather her be a bit on the thin side than have >that horrid tube back! >Hope this makes sense! I don't mean to be negative...I think it's realism. >We are just so proud of Imogen just as she is and evryone adores her and she >mostly gets positive comments wherever she goes...the ones who aren't >positive we just disregard as ignorant people. >Of course if in a few years Imogen becomes desperatley unhappy with her >height we may have to try hormone treatmeant again...but we will have to >explain everything to her...the fact that it could cause heart problems in >later life etc etc.....but it will be her decision. I thought I heard that GH could prevent type 2 diabetes later in life - what is the scoop on heart problems? Inga >Regards >Eileen > >Dayna Carney daycarney@...> wrote: >In reading your message I can tell that you and your family are at peace >with all of your decisions and Imogen is a very lucky girl! > >I am curious about something. You mentioned her birth weight was around 2 >and 1/2 lbs and that she is now about 16lbs and 36 in. If she had a gtube >for nearly 2 years, did her growth " catch up " at all while she was tube fed? > Did she make larger weight gains than before? My daughter has only been on >her tube for 8 weeks and already she has gained over 4.5lbs (YEAH!). I was >just curious about Imogen. I can't wait to see pics of this " fairy " !. > >Dayna, Mom to Alyssa, 2 and now over 20lbs and 32.5in. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 23, 2003 Report Share Posted December 23, 2003 Hi Inga...thankyou for that! Imogen has a tiny waist as well....but that's because she is RSS.She is a typical RSS case with almost all the characteristics....she even has dimples in the backs of her shoulders...I think they are really cute. For the last few years we haven't been treating Imogen with anything and she's been doing fine. We just accept her and love her for who she is and who she is meant to be. Her big personality certainly makes up for her lack of height.We know that nothing will ever make her 'normal' but everyone loves her just as she is and I'm quite confident (on a good day) that she will be a happy and healthy adult whether she is 4ft without treatment of 4ft 8 with. The treatment is worth looking into again tho' because we haven't spoken to our endo for 3 years...he may have something new to say that will make us reconsider the treatment. I've been meaning to ask this for ages.....I'm from the other side of the pond so there are some things you Americans come out with that I don't understand!! What is Fundoplacation when it's at home???? All the best Eileen Inga ihughes@...> wrote: Tim needed the GH for the tube feeding to make a difference - his body without it is also programmed to be very small. I only have one with RSS, and he was 3lbs 5 ounces taken 1 week before his due date. I think adding Udo's oil to his medicine dropper feeds helped us to get him to a whopping 21 pounds the month before his 7th bday - and that was when he was healthy. That was also a big concern for me - whenever he had a tummy bug, he had to go to ER because of his thinness making him at very high risk of dangerous dehydration. And you'd be surprised - I didn't think Tim would grow SO well because he was quite small - still wearing 2Ts just before his 7th bday (and less than a year old around the waist!) - and now he's about the size of a normal 6 year old height and weight less than 2 years later! The combination of the GH, the tube feeds, the fundoplacation, the oil, the pump, and tons of prayers from a whole lot of people (the latter definitely being the most important!!!) really helped him grow wonderfully! So I'll be praying for you. Maybe this is the path the Lord has chosen for Imogen, and I had thought that was the case for for years. But anything is possible if it's God will for her. I'm glad to hear that she is so content - that's great no matter what size you are! Inga At 11:56 AM 12/22/2003 +0000, you wrote: >Hi Inga.......yes the tube did make Imogen put on some weight >temporarily.....but it was due to the 'forced feeding'! She's back to her >natural RSS thiness now which is the way she's meant to be. As for the >height...I can see where you're coming from (have you 2 children with RSS or >have I got mixed up?) I suppose we are coasting at the moment because Imogen >is quite happy and it is more acceptable for girls to be small than boys >isn't it! I know that's not fair. So I can understand your son wanting the >hormone. Maybe in a couple of years we will ask Imogen whether she wants to >have the gh treatment again. Explaining the possible side effects etc. The >thing with Imogen is because she is SO SMALL...no amount of growth hormone >will make her anywhere near normal height anyway. So I sometimes wonder if >the right thing to do is just to let her develop naturally...explaining her >condition to her as she gets older and teaching her how to deal with the >people who stare and make comm! > ents and > at the end of the day to say to her that she is just very short...THAT'S >ALL! There are so many worse conditions our kids could have. >Hope I'm making sense! >Eileen > > >Inga ihughes@...> wrote: >If she had a gtube >>for nearly 2 years, did her growth " catch up " at all while she was tube fed? >> Did she make larger weight gains than before? My daughter has only been on >>her tube for 8 weeks and already she has gained over 4.5lbs (YEAH!). I was >>just curious about Imogen. > >I'm thinking that there are 2 things which have made Tim's tube feedings >make such a difference (we did this the month before he turned 7 years old >and he went from 21 pounds to 45 pounds and grew over half a foot now that >he's 8 and a half) - 1) the fact that we started growth hormone at the same >time, so that his body could use the extra calories (I had found an article >on how it helped children with another syndrome who had less than 1% weight >to height to thrive with more muscle and bone mass) and 2) the fact that we >had a fundo put in with the g-tube. I didn't want the fundo without the >growth hormone, because I figured from experience with ng feeds that his >body really wouldn't use the extra calories, but I didn't want the g-tube >without a fundo because his gag reflex was getting so hyperactive that even >a big cough would cause him to throw up a meal. > >I was not wanting to change him - he asked for a shot to make him grow - >even adults kept giggling about how cute and tiny he was, and perhaps this >gets to a boy more at a certain age... > >Inga > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 23, 2003 Report Share Posted December 23, 2003 At 01:45 PM 12/23/2003 +0000, you wrote: >Hi Inga...thankyou for that! Imogen has a tiny waist as well....but that's >because she is RSS.She is a typical RSS case with almost all the >characteristics....she even has dimples in the backs of her shoulders...I >think they are really cute. For the last few years we haven't been treating >Imogen with anything and she's been doing fine. We just accept her and love >her for who she is and who she is meant to be. Her big personality certainly >makes up for her lack of height.We know that nothing will ever make her >'normal' but everyone loves her just as she is and I'm quite confident (on a >good day) that she will be a happy and healthy adult whether she is 4ft >without treatment of 4ft 8 with. >The treatment is worth looking into again tho' because we haven't spoken to >our endo for 3 years...he may have something new to say that will make us >reconsider the treatment. >I've been meaning to ask this for ages.....I'm from the other side of the >pond so there are some things you Americans come out with that I don't >understand!! What is Fundoplacation when it's at home???? The fundoplacation is when the top of the stomach is loosely wrapped around the esophogus so that the stomach contents won't come up so quickly. I had been frightened of this for years, but it has really helped Tim not keep losing all his food when he coughs after a feeding like the couple years before the surgery. We found the best surgeon we could - Dr. Rothenberg in Denver. I found him on the internet (he's done papers internationally), and I've heard lots of good things about him from our feeding support group. He also was able to get the microvasive button right away without spending time with the g-tube (I just call it a g-tube, but really the tube attaches to the button). Oh, after reading a post from one of the RSS adults, one other thing to consider may be the ease Imogen may have in carrying a child to term when she becomes an adult. I think she was saying that larger RSS women had an easier time. Even though I was married at 20, I didn't really want children until I turned 30, and then it hit me pretty hard. So it might be worth looking into how to best leave her options open that way, even though it is impossible to totally plan a baby (my planned pregnancies miscarried, and Tim was our much longed-for surprise!). Inga >All the best >Eileen > >Inga ihughes@...> wrote: >Tim needed the GH for the tube feeding to make a difference - his body >without it is also programmed to be very small. I only have one with RSS, >and he was 3lbs 5 ounces taken 1 week before his due date. I think adding >Udo's oil to his medicine dropper feeds helped us to get him to a whopping >21 pounds the month before his 7th bday - and that was when he was healthy. >That was also a big concern for me - whenever he had a tummy bug, he had >to go to ER because of his thinness making him at very high risk of >dangerous dehydration. > >And you'd be surprised - I didn't think Tim would grow SO well because he >was quite small - still wearing 2Ts just before his 7th bday (and less than >a year old around the waist!) - and now he's about the size of a normal 6 >year old height and weight less than 2 years later! The combination of the >GH, the tube feeds, the fundoplacation, the oil, the pump, and tons of >prayers from a whole lot of people (the latter definitely being the most >important!!!) really helped him grow wonderfully! > >So I'll be praying for you. Maybe this is the path the Lord has chosen for >Imogen, and I had thought that was the case for for years. But >anything is possible if it's God will for her. I'm glad to hear that she >is so content - that's great no matter what size you are! > >Inga > >At 11:56 AM 12/22/2003 +0000, you wrote: >>Hi Inga.......yes the tube did make Imogen put on some weight >>temporarily.....but it was due to the 'forced feeding'! She's back to her >>natural RSS thiness now which is the way she's meant to be. As for the >>height...I can see where you're coming from (have you 2 children with RSS or >>have I got mixed up?) I suppose we are coasting at the moment because Imogen >>is quite happy and it is more acceptable for girls to be small than boys >>isn't it! I know that's not fair. So I can understand your son wanting the >>hormone. Maybe in a couple of years we will ask Imogen whether she wants to >>have the gh treatment again. Explaining the possible side effects etc. The >>thing with Imogen is because she is SO SMALL...no amount of growth hormone >>will make her anywhere near normal height anyway. So I sometimes wonder if >>the right thing to do is just to let her develop naturally...explaining her >>condition to her as she gets older and teaching her how to deal with the >>people who stare and make comm! >> ents and >> at the end of the day to say to her that she is just very short...THAT'S >>ALL! There are so many worse conditions our kids could have. >>Hope I'm making sense! >>Eileen >> >> >>Inga ihughes@...> wrote: >>If she had a gtube >>>for nearly 2 years, did her growth " catch up " at all while she was tube fed? >>> Did she make larger weight gains than before? My daughter has only been on >>>her tube for 8 weeks and already she has gained over 4.5lbs (YEAH!). I was >>>just curious about Imogen. >> >>I'm thinking that there are 2 things which have made Tim's tube feedings >>make such a difference (we did this the month before he turned 7 years old >>and he went from 21 pounds to 45 pounds and grew over half a foot now that >>he's 8 and a half) - 1) the fact that we started growth hormone at the same >>time, so that his body could use the extra calories (I had found an article >>on how it helped children with another syndrome who had less than 1% weight >>to height to thrive with more muscle and bone mass) and 2) the fact that we >>had a fundo put in with the g-tube. I didn't want the fundo without the >>growth hormone, because I figured from experience with ng feeds that his >>body really wouldn't use the extra calories, but I didn't want the g-tube >>without a fundo because his gag reflex was getting so hyperactive that even >>a big cough would cause him to throw up a meal. >> >>I was not wanting to change him - he asked for a shot to make him grow - >>even adults kept giggling about how cute and tiny he was, and perhaps this >>gets to a boy more at a certain age... >> >>Inga >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 24, 2003 Report Share Posted December 24, 2003 Pardon my ignorance, but what is a microvasive button?? Dayna, MOm to Alyssa Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 24, 2003 Report Share Posted December 24, 2003 I'm not sure if I understand exactly what that word means, but the button is a small one which takes a 14Fr x 1.2 cm feeding tube... Inga At 09:58 AM 12/24/2003 -0600, you wrote: >Pardon my ignorance, but what is a microvasive button?? > >Dayna, MOm to Alyssa > > > Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.