growth hormone vs. tube feedings?

[gr33nie]

Hello<br>
<br>
First I have to apologize for asking so many questions.  This
is so new and I just have so many.<br>
<br>
So I am starting to get a good understanding about how we will need
to do meds/cpt to keep Eli's lungs functioning well.  The part
that I'm really worried/confused about now is his nutrition.<br>
<br>
Just to give a little background.  Eli was born full term and
gained very well with breastfeeding until 6 months of age.  At
that point he gradually stopped gaining and around 10 months
started losing.  He went from the 75% at 6 moths to WAY off
the charts at 11 months.  From 6-11 months he also had no
interest in eating.  He would really only eat Cheerios and not
very many of them.  We all thought that he had a feeding
aversion due to reflux.<br>
<br>
Then about two weeks ago he landed in the hospital because of all
of his weight loss/lack of energy/coughing etc.  Within 24
hours we had a dx of CF and he was immediately put on an IV for
hydration.  24 hours after that he started eating really well,
it was like magic.<br>
<br>
Now we are home from the hospital and off of the fluids IV.
 His eating is so much better than before we went to the
hospital but it's still not great.  He just doesn't seem to
want to eat that much or drink that much and I know he needs to eat
MORE to catch up on his weight and height.  I'm so happy with
his progress but I have a gut feeling (no pun intended<img src="i/expressions/face-icon-small-smile.gif" border="0">) that he's
just not going to be able to do it on his own.<br>
<br>
I've heard about feeding tubes and growth hormone therapy to help
with this problem.  (We already have him on a HIGH fat/calorie
diet).  So, what I'm wondering is, if he can't gain the weight
on his own, what's the best route.  Tube feedings, growth
hormone or some other thing?  I'm sure they all have their
pros and cons but I just don't know very much about them and he is
at such critical age for developing that I want to be proactive
about it.<br>
<br>
Thank you , thank you , thank you ahead of time!<br>
<br>
Sarah<br>

 

[gr33nie]

Hello<br>
<br>
First I have to apologize for asking so many questions.  This
is so new and I just have so many.<br>
<br>
So I am starting to get a good understanding about how we will need
to do meds/cpt to keep Eli's lungs functioning well.  The part
that I'm really worried/confused about now is his nutrition.<br>
<br>
Just to give a little background.  Eli was born full term and
gained very well with breastfeeding until 6 months of age.  At
that point he gradually stopped gaining and around 10 months
started losing.  He went from the 75% at 6 moths to WAY off
the charts at 11 months.  From 6-11 months he also had no
interest in eating.  He would really only eat Cheerios and not
very many of them.  We all thought that he had a feeding
aversion due to reflux.<br>
<br>
Then about two weeks ago he landed in the hospital because of all
of his weight loss/lack of energy/coughing etc.  Within 24
hours we had a dx of CF and he was immediately put on an IV for
hydration.  24 hours after that he started eating really well,
it was like magic.<br>
<br>
Now we are home from the hospital and off of the fluids IV.
 His eating is so much better than before we went to the
hospital but it's still not great.  He just doesn't seem to
want to eat that much or drink that much and I know he needs to eat
MORE to catch up on his weight and height.  I'm so happy with
his progress but I have a gut feeling (no pun intended<img src="i/expressions/face-icon-small-smile.gif" border="0">) that he's
just not going to be able to do it on his own.<br>
<br>
I've heard about feeding tubes and growth hormone therapy to help
with this problem.  (We already have him on a HIGH fat/calorie
diet).  So, what I'm wondering is, if he can't gain the weight
on his own, what's the best route.  Tube feedings, growth
hormone or some other thing?  I'm sure they all have their
pros and cons but I just don't know very much about them and he is
at such critical age for developing that I want to be proactive
about it.<br>
<br>
Thank you , thank you , thank you ahead of time!<br>
<br>
Sarah<br>

 

[gr33nie]

Hello<br>
<br>
First I have to apologize for asking so many questions.  This
is so new and I just have so many.<br>
<br>
So I am starting to get a good understanding about how we will need
to do meds/cpt to keep Eli's lungs functioning well.  The part
that I'm really worried/confused about now is his nutrition.<br>
<br>
Just to give a little background.  Eli was born full term and
gained very well with breastfeeding until 6 months of age.  At
that point he gradually stopped gaining and around 10 months
started losing.  He went from the 75% at 6 moths to WAY off
the charts at 11 months.  From 6-11 months he also had no
interest in eating.  He would really only eat Cheerios and not
very many of them.  We all thought that he had a feeding
aversion due to reflux.<br>
<br>
Then about two weeks ago he landed in the hospital because of all
of his weight loss/lack of energy/coughing etc.  Within 24
hours we had a dx of CF and he was immediately put on an IV for
hydration.  24 hours after that he started eating really well,
it was like magic.<br>
<br>
Now we are home from the hospital and off of the fluids IV.
 His eating is so much better than before we went to the
hospital but it's still not great.  He just doesn't seem to
want to eat that much or drink that much and I know he needs to eat
MORE to catch up on his weight and height.  I'm so happy with
his progress but I have a gut feeling (no pun intended<img src="i/expressions/face-icon-small-smile.gif" border="0">) that he's
just not going to be able to do it on his own.<br>
<br>
I've heard about feeding tubes and growth hormone therapy to help
with this problem.  (We already have him on a HIGH fat/calorie
diet).  So, what I'm wondering is, if he can't gain the weight
on his own, what's the best route.  Tube feedings, growth
hormone or some other thing?  I'm sure they all have their
pros and cons but I just don't know very much about them and he is
at such critical age for developing that I want to be proactive
about it.<br>
<br>
Thank you , thank you , thank you ahead of time!<br>
<br>
Sarah<br>

 

[JazzysMom]

So many things to decide. As most people would say that its best for a body or person to do as much on its own before having intervention. That being said when a CFer is so young its truly hard to know how much is pure stubborness, normal childhood defiance or CF trouble. I would say to trust your instinct & consult with the doctor closely. As to the growth hormone...I dont know much about it, but I was under the impression this was more of an intervention for those who are shorter or smaller in statue. This is much different then lack of proper nutrition. We have so many Moms of little ones on here that you should get some good feed back. BTW dont feel funny having so many ???. That is the only way you will learn as well as the rest of us!

 

[JazzysMom]

So many things to decide. As most people would say that its best for a body or person to do as much on its own before having intervention. That being said when a CFer is so young its truly hard to know how much is pure stubborness, normal childhood defiance or CF trouble. I would say to trust your instinct & consult with the doctor closely. As to the growth hormone...I dont know much about it, but I was under the impression this was more of an intervention for those who are shorter or smaller in statue. This is much different then lack of proper nutrition. We have so many Moms of little ones on here that you should get some good feed back. BTW dont feel funny having so many ???. That is the only way you will learn as well as the rest of us!

 

[JazzysMom]

So many things to decide. As most people would say that its best for a body or person to do as much on its own before having intervention. That being said when a CFer is so young its truly hard to know how much is pure stubborness, normal childhood defiance or CF trouble. I would say to trust your instinct & consult with the doctor closely. As to the growth hormone...I dont know much about it, but I was under the impression this was more of an intervention for those who are shorter or smaller in statue. This is much different then lack of proper nutrition. We have so many Moms of little ones on here that you should get some good feed back. BTW dont feel funny having so many ???. That is the only way you will learn as well as the rest of us!

 

[sdelorenzo]

Sarah,
Sorry to hear that Eli has cf. But it is good that he now has some meds that can help him gain weight and keep his lungs clear. I have a five-year-old daughter and three year-old son that both have cf. My daughter was diagnosed at one month-old. She ended up being on a feeding tube for three months as an infant. She was on it because of food refusal and vomiting. Later we found out it was due to a milk allergy. So once we eliminated milk from her diet she began to eat on her own. But, all of those problems as well as my determination to get her to eat "more" caused her some big eating issues as she has grown. Eating has never been something she has enjoyed. She and my son have done great, lung wise until this past month. The doctor is now concerned about her lung x-rays. Her weight was good 6 months ago (45%). But she hasn't gained since then. Anyway, her doctors are starting to get concerned about her weight and now these lung problems. So I asked her pulmonary and GI doctors if she needed tube feedings at night. They both said yes she does. (Not sure when they were ever going to bring up the subject!) So we see the surgeon next week. I knew she would one day have to get a feeding tube, she couldn't keep her weight up without eating much.

But we have been going through this for 5 years with her. There have been times I panicked that my kids weren't gaining. Then two or three months later that gained a few pounds quickly and everyone was thrilled. So I would give your son some time to get used to the enzymes, reflux meds, etc. Try not to stress about how much he eats. I know that is very difficult, but honestly there is nothing you can do if he doesn't want to eat. It will just cause more problems for the both of you if he feels pressured or that he is losing control over what goes in his mouth. That was the big mistake I made with my daughter. I hovered over her. After all I was "supposed to get down 1400 calories that day." A good book I think you should read is "Child of Mine" by Ellyn Satter. You can get it on Amazon. It really helped me understand how to properly feed my second child who has cf.
e-mail me at sdelorenzo@sbcglobal.net if you have any more questions.
Sharon, mom of Sophia, 5 and Jack, 3 both with cf

 

[sdelorenzo]

Sarah,
Sorry to hear that Eli has cf. But it is good that he now has some meds that can help him gain weight and keep his lungs clear. I have a five-year-old daughter and three year-old son that both have cf. My daughter was diagnosed at one month-old. She ended up being on a feeding tube for three months as an infant. She was on it because of food refusal and vomiting. Later we found out it was due to a milk allergy. So once we eliminated milk from her diet she began to eat on her own. But, all of those problems as well as my determination to get her to eat "more" caused her some big eating issues as she has grown. Eating has never been something she has enjoyed. She and my son have done great, lung wise until this past month. The doctor is now concerned about her lung x-rays. Her weight was good 6 months ago (45%). But she hasn't gained since then. Anyway, her doctors are starting to get concerned about her weight and now these lung problems. So I asked her pulmonary and GI doctors if she needed tube feedings at night. They both said yes she does. (Not sure when they were ever going to bring up the subject!) So we see the surgeon next week. I knew she would one day have to get a feeding tube, she couldn't keep her weight up without eating much.

But we have been going through this for 5 years with her. There have been times I panicked that my kids weren't gaining. Then two or three months later that gained a few pounds quickly and everyone was thrilled. So I would give your son some time to get used to the enzymes, reflux meds, etc. Try not to stress about how much he eats. I know that is very difficult, but honestly there is nothing you can do if he doesn't want to eat. It will just cause more problems for the both of you if he feels pressured or that he is losing control over what goes in his mouth. That was the big mistake I made with my daughter. I hovered over her. After all I was "supposed to get down 1400 calories that day." A good book I think you should read is "Child of Mine" by Ellyn Satter. You can get it on Amazon. It really helped me understand how to properly feed my second child who has cf.
e-mail me at sdelorenzo@sbcglobal.net if you have any more questions.
Sharon, mom of Sophia, 5 and Jack, 3 both with cf

 

[sdelorenzo]

Sarah,
Sorry to hear that Eli has cf. But it is good that he now has some meds that can help him gain weight and keep his lungs clear. I have a five-year-old daughter and three year-old son that both have cf. My daughter was diagnosed at one month-old. She ended up being on a feeding tube for three months as an infant. She was on it because of food refusal and vomiting. Later we found out it was due to a milk allergy. So once we eliminated milk from her diet she began to eat on her own. But, all of those problems as well as my determination to get her to eat "more" caused her some big eating issues as she has grown. Eating has never been something she has enjoyed. She and my son have done great, lung wise until this past month. The doctor is now concerned about her lung x-rays. Her weight was good 6 months ago (45%). But she hasn't gained since then. Anyway, her doctors are starting to get concerned about her weight and now these lung problems. So I asked her pulmonary and GI doctors if she needed tube feedings at night. They both said yes she does. (Not sure when they were ever going to bring up the subject!) So we see the surgeon next week. I knew she would one day have to get a feeding tube, she couldn't keep her weight up without eating much.

But we have been going through this for 5 years with her. There have been times I panicked that my kids weren't gaining. Then two or three months later that gained a few pounds quickly and everyone was thrilled. So I would give your son some time to get used to the enzymes, reflux meds, etc. Try not to stress about how much he eats. I know that is very difficult, but honestly there is nothing you can do if he doesn't want to eat. It will just cause more problems for the both of you if he feels pressured or that he is losing control over what goes in his mouth. That was the big mistake I made with my daughter. I hovered over her. After all I was "supposed to get down 1400 calories that day." A good book I think you should read is "Child of Mine" by Ellyn Satter. You can get it on Amazon. It really helped me understand how to properly feed my second child who has cf.
e-mail me at sdelorenzo@sbcglobal.net if you have any more questions.
Sharon, mom of Sophia, 5 and Jack, 3 both with cf

 

[melleemac]

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

 

[melleemac]

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

 

[melleemac]

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

 

[damiensmom]

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">

 

[damiensmom]

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">

 

[damiensmom]

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">

 

[jltopple]

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.

 

[jltopple]

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.

 

[jltopple]

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.

 

[JRPandTJP]

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,

 

[JRPandTJP]

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,