CF, Weight Gain and Feeding Tubes

[anonymous]

Hi. I am the mother of a 3 year old boy living with CF. This is the first time I've had the courage to read thru some of these discussions since my son's diagnosis at age 1 1/2. Thank you to EVERYONE who contributes to this site. All the information is soo useful. Some of the discussion topics I've already dealt with and some I have not. My question is regarding the feeding tubes. I've read from some of the posts that they are necessary to help gain weight. I'm just wondering if those people with the tubes in have had trouble throughout their life or if it became necessary as they became older. I understand that this "genetic disorder" affects everyone differently, but I guess I'm just wondering if this will become necessary for my son at a later time. He is currently 3' 2.5" and weighs 35 lbs.

Please advise........Thank you and GOD bless.

Maggie (DJ3w/CF)

 

[anonymous]

Hi. I am the mother of a 3 year old boy living with CF. This is the first time I've had the courage to read thru some of these discussions since my son's diagnosis at age 1 1/2. Thank you to EVERYONE who contributes to this site. All the information is soo useful. Some of the discussion topics I've already dealt with and some I have not. My question is regarding the feeding tubes. I've read from some of the posts that they are necessary to help gain weight. I'm just wondering if those people with the tubes in have had trouble throughout their life or if it became necessary as they became older. I understand that this "genetic disorder" affects everyone differently, but I guess I'm just wondering if this will become necessary for my son at a later time. He is currently 3' 2.5" and weighs 35 lbs.

Please advise........Thank you and GOD bless.

Maggie (DJ3w/CF)

 

[EmilysMom]

CF being what it is...not everyone ends up with a feeding tube. Emily i almost 21 and has neever even come close to needing a tube. Her appetite has always been HUGE and she ate everything in site as a child. As she got older, her appetite was still good, but after some medication weight gain,she found that she actually had to be careful to watch her weight to not gain alot. (She had gained about 40 pounds and had worked hard to take that 40 pounds off). I'm getting off track. CF affects every patient so differently that maybe DJ won't need a tube and maybe he will, but if that's what it takes to keep him healthy, go for it!
You learn to go withthe flow with CF. Welcome to the CF Family!<img src="i/expressions/face-icon-small-happy.gif" border="0">

 

[EmilysMom]

CF being what it is...not everyone ends up with a feeding tube. Emily i almost 21 and has neever even come close to needing a tube. Her appetite has always been HUGE and she ate everything in site as a child. As she got older, her appetite was still good, but after some medication weight gain,she found that she actually had to be careful to watch her weight to not gain alot. (She had gained about 40 pounds and had worked hard to take that 40 pounds off). I'm getting off track. CF affects every patient so differently that maybe DJ won't need a tube and maybe he will, but if that's what it takes to keep him healthy, go for it!
You learn to go withthe flow with CF. Welcome to the CF Family!<img src="i/expressions/face-icon-small-happy.gif" border="0">

 

[allie1]

Hi Maggie,

I remember the first night I got up the courage to read through this board.....I was a mess but it helped me a lot. It helps to know what to expect in the future but it makes me sad to. My daughter is also 3 and was diagnosed 4 months ago. She only weighs 29 lbs and is 36 inches tall so it sounds like DJ is a good weight b/c they keep telling me Allie is where she should be with her weight. I hope DJ does well and maybe he won't need a feeding tube. It's so hard to say who will and who won't. My daughter's doctor said they can't predict about the feeding tubes.

Hang in there........

Amy

 

[allie1]

Hi Maggie,

I remember the first night I got up the courage to read through this board.....I was a mess but it helped me a lot. It helps to know what to expect in the future but it makes me sad to. My daughter is also 3 and was diagnosed 4 months ago. She only weighs 29 lbs and is 36 inches tall so it sounds like DJ is a good weight b/c they keep telling me Allie is where she should be with her weight. I hope DJ does well and maybe he won't need a feeding tube. It's so hard to say who will and who won't. My daughter's doctor said they can't predict about the feeding tubes.

Hang in there........

Amy

 

[AbsintheSorrow]

To the parents of younger children, one hopeful thing to keep in mind... The younger the child, the better chance they have to live longer than us adults. lol Not to say the adults won't live longer either, but you know what I mean. The meds that I live on now weren't around when I was born (oh my god saying that makes me feel old haha). So with each year, given the new meds and therapies and research, the newer the kids are, the better chance they have. You get the idea. I'm sure your kids will be awesome.

 

[AbsintheSorrow]

To the parents of younger children, one hopeful thing to keep in mind... The younger the child, the better chance they have to live longer than us adults. lol Not to say the adults won't live longer either, but you know what I mean. The meds that I live on now weren't around when I was born (oh my god saying that makes me feel old haha). So with each year, given the new meds and therapies and research, the newer the kids are, the better chance they have. You get the idea. I'm sure your kids will be awesome.

 

[DJsMom]

Thank you all for your feedback. Being a parent of a child with CF is extremely difficult at times, but it's nothing in comparison to what our children have to go thru. Everytime we've been in the hospital, I wish it was me rather than my son going thru it. Everyone keeps telling me that Daniel Joseph will grow into such a strong man, and reading the entries from those people living with CF........I'm starting to BELIEVE it! Thank you.

 

[DJsMom]

Thank you all for your feedback. Being a parent of a child with CF is extremely difficult at times, but it's nothing in comparison to what our children have to go thru. Everytime we've been in the hospital, I wish it was me rather than my son going thru it. Everyone keeps telling me that Daniel Joseph will grow into such a strong man, and reading the entries from those people living with CF........I'm starting to BELIEVE it! Thank you.

 

[anonymous]

Hello,

I just got my feeding tube in May. It had been reccommended to me most of my life to get one, but i had such a huge appetite as a kid that i didn't think i needed it. Well my lungs got worse over the years making it so i just don't seem to have the energy to eat and find i need to sleep more, so i am not awake enough to take in the amount of food i would need. So my feeding tube gets used while i am sleeping, i also run it while i am just "vedging" around the house to get extra calories.


I have had weight problems from the day i was born. I have never been higher than the 15th percentile for weight, but am at about 40th for height (i think they are supposed to match and be a lot higher). My step-son has no CF and is about your sons size, so i think your son is doing well. I am 5'4", and weigh about 95lbs. and am at my best right now.

Feel free to email me juliebowers@gmail.com

Julie

 

[anonymous]

Hello,

I just got my feeding tube in May. It had been reccommended to me most of my life to get one, but i had such a huge appetite as a kid that i didn't think i needed it. Well my lungs got worse over the years making it so i just don't seem to have the energy to eat and find i need to sleep more, so i am not awake enough to take in the amount of food i would need. So my feeding tube gets used while i am sleeping, i also run it while i am just "vedging" around the house to get extra calories.


I have had weight problems from the day i was born. I have never been higher than the 15th percentile for weight, but am at about 40th for height (i think they are supposed to match and be a lot higher). My step-son has no CF and is about your sons size, so i think your son is doing well. I am 5'4", and weigh about 95lbs. and am at my best right now.

Feel free to email me juliebowers@gmail.com

Julie

 

[anonymous]

As a parent with a CF child, the doctors will always try to "scare" you to keep your child healthy. I know they did that to my mom, and it was very frusterating. I've only been in the hospital once (when i was 16 cause i was growing resistant bacteria). I've never had a g-tube. I had a consultation for one, but they figured out what i've been trying to tell them for years, being skinny runs in the family. All my skin folds and stuff were normal, I'm just skinny. I'm 5'5 and weigh 118lbs.


Ashley 20 w/cf

 

[anonymous]

As a parent with a CF child, the doctors will always try to "scare" you to keep your child healthy. I know they did that to my mom, and it was very frusterating. I've only been in the hospital once (when i was 16 cause i was growing resistant bacteria). I've never had a g-tube. I had a consultation for one, but they figured out what i've been trying to tell them for years, being skinny runs in the family. All my skin folds and stuff were normal, I'm just skinny. I'm 5'5 and weigh 118lbs.


Ashley 20 w/cf

 

[anonymous]

Hello everyone, I am here for the same reason. i have twin boys with cf and they are six years old and they only weigh 35 lbs. We get the same lecture every time we go to the cf doctor about the weight. Our last visit was this week and he has put them on megase(unsure of the spelling) for six weeks and if they have not gained in six weeks he really wants us to consider the tube. they have not gained any weight in a year and they have been in the hospital 5 times since birth. Otherwise they do really great. Me and their dad are both small people and they have a nine year old brother(cf free) who only weighs 52 lbs. I guess what i want to know if anyone has had the tube, what kind of problems did you have with it, or if it was the greatest thing you ever did. My neighbor who has worked in a hospital enviroment all her life told me to hold out as long as i could due to the complications from the tube. Has anyone had these complications? Is the tube hard to do? I work full time as a teacher and it really worries me that the boys might need this. I do want to do the best thing for them. the doctor told us the infections could come more frequent because they would not have the energy to fight them off. But if anyone who could see my boys would never know anything is wrong with them. They are so active. And i do mean active. They never sit still and sometimes I think that is why they dont gain. We have tried every fat tip and shake known to man and nothing seems to help. I am really frustrated and don;t know how to get weight on them. Any comments would be so helpful.

Momtocftwins

 

[anonymous]

Hello everyone, I am here for the same reason. i have twin boys with cf and they are six years old and they only weigh 35 lbs. We get the same lecture every time we go to the cf doctor about the weight. Our last visit was this week and he has put them on megase(unsure of the spelling) for six weeks and if they have not gained in six weeks he really wants us to consider the tube. they have not gained any weight in a year and they have been in the hospital 5 times since birth. Otherwise they do really great. Me and their dad are both small people and they have a nine year old brother(cf free) who only weighs 52 lbs. I guess what i want to know if anyone has had the tube, what kind of problems did you have with it, or if it was the greatest thing you ever did. My neighbor who has worked in a hospital enviroment all her life told me to hold out as long as i could due to the complications from the tube. Has anyone had these complications? Is the tube hard to do? I work full time as a teacher and it really worries me that the boys might need this. I do want to do the best thing for them. the doctor told us the infections could come more frequent because they would not have the energy to fight them off. But if anyone who could see my boys would never know anything is wrong with them. They are so active. And i do mean active. They never sit still and sometimes I think that is why they dont gain. We have tried every fat tip and shake known to man and nothing seems to help. I am really frustrated and don;t know how to get weight on them. Any comments would be so helpful.

Momtocftwins

 

[summer732]

To the last poster:
I am 21 years old and I got my feeding tube put in when I was 16 years old. It is the best thing that I ever did. When I first got the feeding tube put in I was gaining like five pounds a week! I eventually plateued (sp?) once I hit 95 pounds, but I'm only 4'11". So I'm short and 95 pounds is perfect for me. I only weighed 72 pounds when I got the feeding tube put in! What I didn't know that the decision to put in the feeding tube saved my life. When I was 20 years old I developed a horrible pneumonia. The doctor said that I was able to fight it off like I did because I had gained so much weight. I also noticed that after the feeeding tube was put in I didn't get sick as often. I have never had major complications from the feeding tube so I'm not sure what your neighbor is talking about. The slight complications that I have had is the feeding tube leaking which causes the skin around the feeding tube to be pretty red. But remember the feeding tube doesn't work unless you are strict about using it. So get ready to be on a schedule with it. I almost wish I would have gotten the feeding tube put in earlier because I wouldn't have missed out on some of my very important growing years!
Hope this all helped!

 

[summer732]

To the last poster:
I am 21 years old and I got my feeding tube put in when I was 16 years old. It is the best thing that I ever did. When I first got the feeding tube put in I was gaining like five pounds a week! I eventually plateued (sp?) once I hit 95 pounds, but I'm only 4'11". So I'm short and 95 pounds is perfect for me. I only weighed 72 pounds when I got the feeding tube put in! What I didn't know that the decision to put in the feeding tube saved my life. When I was 20 years old I developed a horrible pneumonia. The doctor said that I was able to fight it off like I did because I had gained so much weight. I also noticed that after the feeeding tube was put in I didn't get sick as often. I have never had major complications from the feeding tube so I'm not sure what your neighbor is talking about. The slight complications that I have had is the feeding tube leaking which causes the skin around the feeding tube to be pretty red. But remember the feeding tube doesn't work unless you are strict about using it. So get ready to be on a schedule with it. I almost wish I would have gotten the feeding tube put in earlier because I wouldn't have missed out on some of my very important growing years!
Hope this all helped!

 

[farmfamily]

Hello
I am the mother of three two have cf. My son with CF had a g-tube placed 7 years ago I hadn't even heard of it in treating cf patients back then. Although it's not always easy, it has made a difference in his health. Although eating enough is still an issue with him it eases the tension because I know he gets the tube feedings. Especially when he is sick like now.My daughter stays in a higher percentile even without a tube. I too was very small growing up and fought the tube for a long time.
Terri

 

[farmfamily]

Hello
I am the mother of three two have cf. My son with CF had a g-tube placed 7 years ago I hadn't even heard of it in treating cf patients back then. Although it's not always easy, it has made a difference in his health. Although eating enough is still an issue with him it eases the tension because I know he gets the tube feedings. Especially when he is sick like now.My daughter stays in a higher percentile even without a tube. I too was very small growing up and fought the tube for a long time.
Terri