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sacall
09-09-2008, 02:42 PM
Hi, this is my first post. My dd was diagnosed 2/08 with CF at the age of 11 years old. She had been losing weight for the past two years with increasing stomach pains. Since being diagnosed, she has been on enzymes for all her meals/snacks. We have her on a 2000 calorie a day - which she gets about 1500. She can't stand any of the shakes. She still complains of stomach pains even with adjusting her enzymes. She currently is in about the 2.5% - 3.0% for weight. She is so very, very thin. She has her 3 month appt on Thursday.

My question is on the g-tube. I have heard about it, but don't really have any information from people who have one or whose child has one. Do you think it was the right thing to do? Did it make a big difference? My dd is in 7th grade and really doesn't want to have it done for fear of being "different". She won't even eat snacks at school because no one else gets to do that, so she doesn't want to stand out.

Any thoughts or insights would be appreciated. Thanks

Stacy

sacall
09-09-2008, 02:42 PM
Hi, this is my first post. My dd was diagnosed 2/08 with CF at the age of 11 years old. She had been losing weight for the past two years with increasing stomach pains. Since being diagnosed, she has been on enzymes for all her meals/snacks. We have her on a 2000 calorie a day - which she gets about 1500. She can't stand any of the shakes. She still complains of stomach pains even with adjusting her enzymes. She currently is in about the 2.5% - 3.0% for weight. She is so very, very thin. She has her 3 month appt on Thursday.

My question is on the g-tube. I have heard about it, but don't really have any information from people who have one or whose child has one. Do you think it was the right thing to do? Did it make a big difference? My dd is in 7th grade and really doesn't want to have it done for fear of being "different". She won't even eat snacks at school because no one else gets to do that, so she doesn't want to stand out.

Any thoughts or insights would be appreciated. Thanks

Stacy

sacall
09-09-2008, 02:42 PM
Hi, this is my first post. My dd was diagnosed 2/08 with CF at the age of 11 years old. She had been losing weight for the past two years with increasing stomach pains. Since being diagnosed, she has been on enzymes for all her meals/snacks. We have her on a 2000 calorie a day - which she gets about 1500. She can't stand any of the shakes. She still complains of stomach pains even with adjusting her enzymes. She currently is in about the 2.5% - 3.0% for weight. She is so very, very thin. She has her 3 month appt on Thursday.

My question is on the g-tube. I have heard about it, but don't really have any information from people who have one or whose child has one. Do you think it was the right thing to do? Did it make a big difference? My dd is in 7th grade and really doesn't want to have it done for fear of being "different". She won't even eat snacks at school because no one else gets to do that, so she doesn't want to stand out.

Any thoughts or insights would be appreciated. Thanks

Stacy

sacall
09-09-2008, 02:42 PM
Hi, this is my first post. My dd was diagnosed 2/08 with CF at the age of 11 years old. She had been losing weight for the past two years with increasing stomach pains. Since being diagnosed, she has been on enzymes for all her meals/snacks. We have her on a 2000 calorie a day - which she gets about 1500. She can't stand any of the shakes. She still complains of stomach pains even with adjusting her enzymes. She currently is in about the 2.5% - 3.0% for weight. She is so very, very thin. She has her 3 month appt on Thursday.

My question is on the g-tube. I have heard about it, but don't really have any information from people who have one or whose child has one. Do you think it was the right thing to do? Did it make a big difference? My dd is in 7th grade and really doesn't want to have it done for fear of being "different". She won't even eat snacks at school because no one else gets to do that, so she doesn't want to stand out.

Any thoughts or insights would be appreciated. Thanks

Stacy

sacall
09-09-2008, 02:42 PM
Hi, this is my first post. My dd was diagnosed 2/08 with CF at the age of 11 years old. She had been losing weight for the past two years with increasing stomach pains. Since being diagnosed, she has been on enzymes for all her meals/snacks. We have her on a 2000 calorie a day - which she gets about 1500. She can't stand any of the shakes. She still complains of stomach pains even with adjusting her enzymes. She currently is in about the 2.5% - 3.0% for weight. She is so very, very thin. She has her 3 month appt on Thursday.
<br />
<br />My question is on the g-tube. I have heard about it, but don't really have any information from people who have one or whose child has one. Do you think it was the right thing to do? Did it make a big difference? My dd is in 7th grade and really doesn't want to have it done for fear of being "different". She won't even eat snacks at school because no one else gets to do that, so she doesn't want to stand out.
<br />
<br />Any thoughts or insights would be appreciated. Thanks
<br />
<br />Stacy

Ready2Dance
09-09-2008, 10:01 PM
I also hate all of the shakes and supplements. There's just something about them that are just... I dunno,(for lack of a more mature word) icky!

I got a g-tube this past april and while it took me a while, love it. The weight gain hasn't been quick, but it's coming. I've gone from 98lbs to 106! When I first got one, it was called a PEG and there's tubing that hangs out. I hated that part. But now I have a button which is wonderful.

It's all a matter of adjustment. I had a large wrap bandage to bind the tubing to my abdomen when I had the peg and you can't notice the button at all under my clothes now. I have a bard and I know most people have a mic-key. I don't know how noticeable the mic-keys are. The feeds feel a little weird at first, but after a couple weeks, I knew how to make it work for me.

If you have ANY questions, feel free to PM me. I will answer the best I can <img src="i/expressions/face-icon-small-smile.gif" border="0">

Ready2Dance
09-09-2008, 10:01 PM
I also hate all of the shakes and supplements. There's just something about them that are just... I dunno,(for lack of a more mature word) icky!

I got a g-tube this past april and while it took me a while, love it. The weight gain hasn't been quick, but it's coming. I've gone from 98lbs to 106! When I first got one, it was called a PEG and there's tubing that hangs out. I hated that part. But now I have a button which is wonderful.

It's all a matter of adjustment. I had a large wrap bandage to bind the tubing to my abdomen when I had the peg and you can't notice the button at all under my clothes now. I have a bard and I know most people have a mic-key. I don't know how noticeable the mic-keys are. The feeds feel a little weird at first, but after a couple weeks, I knew how to make it work for me.

If you have ANY questions, feel free to PM me. I will answer the best I can <img src="i/expressions/face-icon-small-smile.gif" border="0">

Ready2Dance
09-09-2008, 10:01 PM
I also hate all of the shakes and supplements. There's just something about them that are just... I dunno,(for lack of a more mature word) icky!

I got a g-tube this past april and while it took me a while, love it. The weight gain hasn't been quick, but it's coming. I've gone from 98lbs to 106! When I first got one, it was called a PEG and there's tubing that hangs out. I hated that part. But now I have a button which is wonderful.

It's all a matter of adjustment. I had a large wrap bandage to bind the tubing to my abdomen when I had the peg and you can't notice the button at all under my clothes now. I have a bard and I know most people have a mic-key. I don't know how noticeable the mic-keys are. The feeds feel a little weird at first, but after a couple weeks, I knew how to make it work for me.

If you have ANY questions, feel free to PM me. I will answer the best I can <img src="i/expressions/face-icon-small-smile.gif" border="0">

Ready2Dance
09-09-2008, 10:01 PM
I also hate all of the shakes and supplements. There's just something about them that are just... I dunno,(for lack of a more mature word) icky!

I got a g-tube this past april and while it took me a while, love it. The weight gain hasn't been quick, but it's coming. I've gone from 98lbs to 106! When I first got one, it was called a PEG and there's tubing that hangs out. I hated that part. But now I have a button which is wonderful.

It's all a matter of adjustment. I had a large wrap bandage to bind the tubing to my abdomen when I had the peg and you can't notice the button at all under my clothes now. I have a bard and I know most people have a mic-key. I don't know how noticeable the mic-keys are. The feeds feel a little weird at first, but after a couple weeks, I knew how to make it work for me.

If you have ANY questions, feel free to PM me. I will answer the best I can <img src="i/expressions/face-icon-small-smile.gif" border="0">

Ready2Dance
09-09-2008, 10:01 PM
I also hate all of the shakes and supplements. There's just something about them that are just... I dunno,(for lack of a more mature word) icky!
<br />
<br />I got a g-tube this past april and while it took me a while, love it. The weight gain hasn't been quick, but it's coming. I've gone from 98lbs to 106! When I first got one, it was called a PEG and there's tubing that hangs out. I hated that part. But now I have a button which is wonderful.
<br />
<br />It's all a matter of adjustment. I had a large wrap bandage to bind the tubing to my abdomen when I had the peg and you can't notice the button at all under my clothes now. I have a bard and I know most people have a mic-key. I don't know how noticeable the mic-keys are. The feeds feel a little weird at first, but after a couple weeks, I knew how to make it work for me.
<br />
<br />If you have ANY questions, feel free to PM me. I will answer the best I can <img src="i/expressions/face-icon-small-smile.gif" border="0">

Jane
09-10-2008, 05:24 PM
Stacy, your daughter sounds like my boys. They have both had their g-tubes 4 years and will do almost anything to make sure no one finds out! There are all kinds of tricks believe me. Its definately worth it, but it does cause some anxiety at first(and my boys went through a depression at first too).

My boys also have a Bard style button like Jen mentioned. They are like a beach ball snap. I posted pictures once before, if you'd like to see it, let me know. There are a few differences. The Mic-Key is removable so if it breaks it can be fixed quickly.

Before the Mic-key is put in, they put in a tube (peg) to keep the hole open while its healing (6 weeks I think). It is awkward but can usually be kept flat by wrapping it. After the hole heals, they slide out the tube and slide in the button.

The Bard button is placed all at once during surgery. The Bard is all one piece. The button itself is very flat (flatter than a mic-key) which is why we chose it.

When you speak to the GI doc or nurse ask if they can show you the difference.

Ask me anything you can think of- its a big deal for a kid, you are smart to prepare.

Jane
09-10-2008, 05:24 PM
Stacy, your daughter sounds like my boys. They have both had their g-tubes 4 years and will do almost anything to make sure no one finds out! There are all kinds of tricks believe me. Its definately worth it, but it does cause some anxiety at first(and my boys went through a depression at first too).

My boys also have a Bard style button like Jen mentioned. They are like a beach ball snap. I posted pictures once before, if you'd like to see it, let me know. There are a few differences. The Mic-Key is removable so if it breaks it can be fixed quickly.

Before the Mic-key is put in, they put in a tube (peg) to keep the hole open while its healing (6 weeks I think). It is awkward but can usually be kept flat by wrapping it. After the hole heals, they slide out the tube and slide in the button.

The Bard button is placed all at once during surgery. The Bard is all one piece. The button itself is very flat (flatter than a mic-key) which is why we chose it.

When you speak to the GI doc or nurse ask if they can show you the difference.

Ask me anything you can think of- its a big deal for a kid, you are smart to prepare.

Jane
09-10-2008, 05:24 PM
Stacy, your daughter sounds like my boys. They have both had their g-tubes 4 years and will do almost anything to make sure no one finds out! There are all kinds of tricks believe me. Its definately worth it, but it does cause some anxiety at first(and my boys went through a depression at first too).

My boys also have a Bard style button like Jen mentioned. They are like a beach ball snap. I posted pictures once before, if you'd like to see it, let me know. There are a few differences. The Mic-Key is removable so if it breaks it can be fixed quickly.

Before the Mic-key is put in, they put in a tube (peg) to keep the hole open while its healing (6 weeks I think). It is awkward but can usually be kept flat by wrapping it. After the hole heals, they slide out the tube and slide in the button.

The Bard button is placed all at once during surgery. The Bard is all one piece. The button itself is very flat (flatter than a mic-key) which is why we chose it.

When you speak to the GI doc or nurse ask if they can show you the difference.

Ask me anything you can think of- its a big deal for a kid, you are smart to prepare.

Jane
09-10-2008, 05:24 PM
Stacy, your daughter sounds like my boys. They have both had their g-tubes 4 years and will do almost anything to make sure no one finds out! There are all kinds of tricks believe me. Its definately worth it, but it does cause some anxiety at first(and my boys went through a depression at first too).

My boys also have a Bard style button like Jen mentioned. They are like a beach ball snap. I posted pictures once before, if you'd like to see it, let me know. There are a few differences. The Mic-Key is removable so if it breaks it can be fixed quickly.

Before the Mic-key is put in, they put in a tube (peg) to keep the hole open while its healing (6 weeks I think). It is awkward but can usually be kept flat by wrapping it. After the hole heals, they slide out the tube and slide in the button.

The Bard button is placed all at once during surgery. The Bard is all one piece. The button itself is very flat (flatter than a mic-key) which is why we chose it.

When you speak to the GI doc or nurse ask if they can show you the difference.

Ask me anything you can think of- its a big deal for a kid, you are smart to prepare.

Jane
09-10-2008, 05:24 PM
Stacy, your daughter sounds like my boys. They have both had their g-tubes 4 years and will do almost anything to make sure no one finds out! There are all kinds of tricks believe me. Its definately worth it, but it does cause some anxiety at first(and my boys went through a depression at first too).
<br />
<br />My boys also have a Bard style button like Jen mentioned. They are like a beach ball snap. I posted pictures once before, if you'd like to see it, let me know. There are a few differences. The Mic-Key is removable so if it breaks it can be fixed quickly.
<br />
<br />Before the Mic-key is put in, they put in a tube (peg) to keep the hole open while its healing (6 weeks I think). It is awkward but can usually be kept flat by wrapping it. After the hole heals, they slide out the tube and slide in the button.
<br />
<br />The Bard button is placed all at once during surgery. The Bard is all one piece. The button itself is very flat (flatter than a mic-key) which is why we chose it.
<br />
<br />When you speak to the GI doc or nurse ask if they can show you the difference.
<br />
<br />Ask me anything you can think of- its a big deal for a kid, you are smart to prepare.

sacall
09-16-2008, 03:45 PM
Thank you both for your replies! We did see the doctor last Thursday. Emma did gain almost a pound, but she is still down 1/2 pound from last March and over 4 lbs from last year.

The doctor did talk about doing the g-tube and even told Emma she could see pictures of what it looks like. We have our next visit in December, so we will see where her weight is and how she is doing. If she is still down, I think this will be a real possiblity.

I'll have to ask what kind of g-tube they do, but I'm thinking it is the bard. I will ask to see the two, just to make sure. And, I'll let Emma decide.

Thanks for your replies.

Stacy

sacall
09-16-2008, 03:45 PM
Thank you both for your replies! We did see the doctor last Thursday. Emma did gain almost a pound, but she is still down 1/2 pound from last March and over 4 lbs from last year.

The doctor did talk about doing the g-tube and even told Emma she could see pictures of what it looks like. We have our next visit in December, so we will see where her weight is and how she is doing. If she is still down, I think this will be a real possiblity.

I'll have to ask what kind of g-tube they do, but I'm thinking it is the bard. I will ask to see the two, just to make sure. And, I'll let Emma decide.

Thanks for your replies.

Stacy

sacall
09-16-2008, 03:45 PM
Thank you both for your replies! We did see the doctor last Thursday. Emma did gain almost a pound, but she is still down 1/2 pound from last March and over 4 lbs from last year.

The doctor did talk about doing the g-tube and even told Emma she could see pictures of what it looks like. We have our next visit in December, so we will see where her weight is and how she is doing. If she is still down, I think this will be a real possiblity.

I'll have to ask what kind of g-tube they do, but I'm thinking it is the bard. I will ask to see the two, just to make sure. And, I'll let Emma decide.

Thanks for your replies.

Stacy

sacall
09-16-2008, 03:45 PM
Thank you both for your replies! We did see the doctor last Thursday. Emma did gain almost a pound, but she is still down 1/2 pound from last March and over 4 lbs from last year.

The doctor did talk about doing the g-tube and even told Emma she could see pictures of what it looks like. We have our next visit in December, so we will see where her weight is and how she is doing. If she is still down, I think this will be a real possiblity.

I'll have to ask what kind of g-tube they do, but I'm thinking it is the bard. I will ask to see the two, just to make sure. And, I'll let Emma decide.

Thanks for your replies.

Stacy

sacall
09-16-2008, 03:45 PM
Thank you both for your replies! We did see the doctor last Thursday. Emma did gain almost a pound, but she is still down 1/2 pound from last March and over 4 lbs from last year.
<br />
<br />The doctor did talk about doing the g-tube and even told Emma she could see pictures of what it looks like. We have our next visit in December, so we will see where her weight is and how she is doing. If she is still down, I think this will be a real possiblity.
<br />
<br />I'll have to ask what kind of g-tube they do, but I'm thinking it is the bard. I will ask to see the two, just to make sure. And, I'll let Emma decide.
<br />
<br />Thanks for your replies.
<br />
<br />Stacy