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Thread: growth hormone vs. tube feedings?

  1. #11
    melleemac
    Guest

    growth hormone vs. tube feedings?

    Hi Sarah
    I have twin boys with cf, who have always had trouble with their weight. They have been on tube feedings many times when they were infants. They were malnurished when they were diagnosed and it seemed to take forever for them to gain any weight. They would spit up every time they were fed which didnt help. They started taking cisapride (sp) for reflux and have been on meds for reflux ever since, Branden is now on ranitidine and Michael is on Losec. When they were a year old they only weighed about 14lbs! My advice is to just give it a little time and keep pumping in the calories!
    As for the growth hormones.......Ive never heard of getting them for being under weight. My boys were tested a couple years ago to see if their bodies were releasing enough growth hormones as they are really small for their age. The test came back borderline, so we were told that they would have to be tested again.
    Hang in there!
    Mel

  2. #12
    melleemac
    Guest

    growth hormone vs. tube feedings?

    Hi Sarah
    I have twin boys with cf, who have always had trouble with their weight. They have been on tube feedings many times when they were infants. They were malnurished when they were diagnosed and it seemed to take forever for them to gain any weight. They would spit up every time they were fed which didnt help. They started taking cisapride (sp) for reflux and have been on meds for reflux ever since, Branden is now on ranitidine and Michael is on Losec. When they were a year old they only weighed about 14lbs! My advice is to just give it a little time and keep pumping in the calories!
    As for the growth hormones.......Ive never heard of getting them for being under weight. My boys were tested a couple years ago to see if their bodies were releasing enough growth hormones as they are really small for their age. The test came back borderline, so we were told that they would have to be tested again.
    Hang in there!
    Mel

  3. #13
    Senior Member
    Join Date
    Dec 2005
    Posts
    743

    growth hormone vs. tube feedings?

    I struggle with issue every day in my mind. I would look up tube feedings or enternal feeding on yahooo gooogle whatever, pub med . Damien is 1 year one month and weighs 18.2 pounds 3 days ago. He only weighed 3 pounds at birth. I have been pressured and still am to get damien a g tube. I have many concerns about a tube. but growth hormones? I will have to look into. I have never been told this is a option. You have? I have the opinion that tube feeding is for the extremly disabeld and if you gain weight and eat well then stay that way. Damien may never be in the 50% range he may never be tall. hes pulmonary function is good . I also belive that its very important for the care giver, mom ,whoever to go with what they feel is beneficial and what they are ok with mentally and physically for there child and for themself. . I wish you well<img src="i/expressions/present.gif" border="0">

  4. #14
    Senior Member
    Join Date
    Dec 2005
    Posts
    743

    growth hormone vs. tube feedings?

    I struggle with issue every day in my mind. I would look up tube feedings or enternal feeding on yahooo gooogle whatever, pub med . Damien is 1 year one month and weighs 18.2 pounds 3 days ago. He only weighed 3 pounds at birth. I have been pressured and still am to get damien a g tube. I have many concerns about a tube. but growth hormones? I will have to look into. I have never been told this is a option. You have? I have the opinion that tube feeding is for the extremly disabeld and if you gain weight and eat well then stay that way. Damien may never be in the 50% range he may never be tall. hes pulmonary function is good . I also belive that its very important for the care giver, mom ,whoever to go with what they feel is beneficial and what they are ok with mentally and physically for there child and for themself. . I wish you well<img src="i/expressions/present.gif" border="0">

  5. #15
    Senior Member
    Join Date
    Dec 2005
    Posts
    743

    growth hormone vs. tube feedings?

    I struggle with issue every day in my mind. I would look up tube feedings or enternal feeding on yahooo gooogle whatever, pub med . Damien is 1 year one month and weighs 18.2 pounds 3 days ago. He only weighed 3 pounds at birth. I have been pressured and still am to get damien a g tube. I have many concerns about a tube. but growth hormones? I will have to look into. I have never been told this is a option. You have? I have the opinion that tube feeding is for the extremly disabeld and if you gain weight and eat well then stay that way. Damien may never be in the 50% range he may never be tall. hes pulmonary function is good . I also belive that its very important for the care giver, mom ,whoever to go with what they feel is beneficial and what they are ok with mentally and physically for there child and for themself. . I wish you well<img src="i/expressions/present.gif" border="0">

  6. #16
    Junior Member
    Join Date
    Dec 2006
    Posts
    10

    growth hormone vs. tube feedings?

    I am worried about the dr pushing so hard for my son to have a g-tube that it is rubbing me the wrong way, not to mention the dr doesnt like that i am going for a second opinion. He eats too much for being 4 months old is what he told me which i think is silly. My daughter eats about 2000 calories a day at 3 so why wouldnt my son be hungry? I am concerned he really hasnt taken the time to think of other options. It isnt like he doesnt want to eat and doesnt mind his medications at all. he has no pulmonary troubles neither does my daughter they just have severe malabsorbtion. My worry is he will not eat as much if they put a tube in becasue that is what happen when he had an ng tube. i guess to me surgery whether 15 mins or not is still surgery and unless he is at risk i cant do it.

  7. #17
    Junior Member
    Join Date
    Dec 2006
    Posts
    10

    growth hormone vs. tube feedings?

    I am worried about the dr pushing so hard for my son to have a g-tube that it is rubbing me the wrong way, not to mention the dr doesnt like that i am going for a second opinion. He eats too much for being 4 months old is what he told me which i think is silly. My daughter eats about 2000 calories a day at 3 so why wouldnt my son be hungry? I am concerned he really hasnt taken the time to think of other options. It isnt like he doesnt want to eat and doesnt mind his medications at all. he has no pulmonary troubles neither does my daughter they just have severe malabsorbtion. My worry is he will not eat as much if they put a tube in becasue that is what happen when he had an ng tube. i guess to me surgery whether 15 mins or not is still surgery and unless he is at risk i cant do it.

  8. #18
    Junior Member
    Join Date
    Dec 2006
    Posts
    10

    growth hormone vs. tube feedings?

    I am worried about the dr pushing so hard for my son to have a g-tube that it is rubbing me the wrong way, not to mention the dr doesnt like that i am going for a second opinion. He eats too much for being 4 months old is what he told me which i think is silly. My daughter eats about 2000 calories a day at 3 so why wouldnt my son be hungry? I am concerned he really hasnt taken the time to think of other options. It isnt like he doesnt want to eat and doesnt mind his medications at all. he has no pulmonary troubles neither does my daughter they just have severe malabsorbtion. My worry is he will not eat as much if they put a tube in becasue that is what happen when he had an ng tube. i guess to me surgery whether 15 mins or not is still surgery and unless he is at risk i cant do it.

  9. #19
    Senior Member
    Join Date
    Apr 2006
    Posts
    642

    growth hormone vs. tube feedings?

    Our son was dx at 3 1/2 months after malabsorption issues ranging from vitamin K deficiency at 7 weeks old to protein and zinc deficiencies after that. He was a mess and wasn't able to keep down anything much less absorb it. He was breastfed as well (something I had to fight for after he was diagnosed) and placed on an NG feeding tube temporarily to boost his weight in the beginning... he wasn't on the charts either. He is 2 now and off his reflux and liver meds, in the 50% for weight, and has no lung issues thus far. We are agressive with nutrition and supplements with help with inflammation and digestion.

    I would say this, no matter how it presents itself, malabsorption of nutrients causes the body a lot of stress. It can take a while for the body to adjust to being nurished again. I say that once he got enzymes, his liver and digestive tract healed from the inflammation and reflux, it took about 6 months for him to even out. He was gaining but until this point it was a bit slow. Each month after that got easier and his appetite came on stronger. I believe some children, especially with reflux, may have associated food with pain more than we imagine. Once they realize it doesn't hurt to eat anymore...things improve (but slowly).

    I would give her some time. If you feel an NG would help boost her a bit for a month or so (maybe night feeds) then maybe discuss it with her doctors. I believe you are entitled to as many opinions as you wish and if a doctor is uncomfortable with that too DA** bad! If they are good and confident in there care then they should welcome it. G-tubes and growth hormones, I would try other things before trying these options if at all possible.

    There are some natural ways to help with inflammation of the gut and may help with absorption. PM me if you need some resources on probiotics, DHA, or other natural supportive things.

    Warmly,


  10. #20
    Senior Member
    Join Date
    Apr 2006
    Posts
    642

    growth hormone vs. tube feedings?

    Our son was dx at 3 1/2 months after malabsorption issues ranging from vitamin K deficiency at 7 weeks old to protein and zinc deficiencies after that. He was a mess and wasn't able to keep down anything much less absorb it. He was breastfed as well (something I had to fight for after he was diagnosed) and placed on an NG feeding tube temporarily to boost his weight in the beginning... he wasn't on the charts either. He is 2 now and off his reflux and liver meds, in the 50% for weight, and has no lung issues thus far. We are agressive with nutrition and supplements with help with inflammation and digestion.

    I would say this, no matter how it presents itself, malabsorption of nutrients causes the body a lot of stress. It can take a while for the body to adjust to being nurished again. I say that once he got enzymes, his liver and digestive tract healed from the inflammation and reflux, it took about 6 months for him to even out. He was gaining but until this point it was a bit slow. Each month after that got easier and his appetite came on stronger. I believe some children, especially with reflux, may have associated food with pain more than we imagine. Once they realize it doesn't hurt to eat anymore...things improve (but slowly).

    I would give her some time. If you feel an NG would help boost her a bit for a month or so (maybe night feeds) then maybe discuss it with her doctors. I believe you are entitled to as many opinions as you wish and if a doctor is uncomfortable with that too DA** bad! If they are good and confident in there care then they should welcome it. G-tubes and growth hormones, I would try other things before trying these options if at all possible.

    There are some natural ways to help with inflammation of the gut and may help with absorption. PM me if you need some resources on probiotics, DHA, or other natural supportive things.

    Warmly,


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