Re: doctors are wanting to start shianne on feeding tube for the ...

[Guest guest]

My daughter is 10. She had the Mickey Button feeding tube put in October 5,

2001. She had not gained any weight for 2 years prior to getting the button

(feeding tube). Since that time, she has gained almost 10 pounds.

I, like you, was nervous about getting the feeding tube. Well, I shouldn't

have been. still plays softball (she loves to slide into homeplate),

swims, jumps on trampoline, goes to school, etc. And, she has not been in

the hospital but 1 time since the feeding tube was put in.

One thing our doctor and nutritionist explained was that is going to

be going through the normal changes kids have. We knew she wasn't getting

the nutrition she needed to grow. My oldest daughter started having her

cycle when she was 9 years old. The doctor was concerned that would

not be able to mature as " normal " kids without the proper nutrition. I

talked to a mother of a boy with cf who got a feeding tube when he was 15.

She said she wished he had gotten it sooner. He didn't develop as his

brothers did, but she feels that if they had gotten the proper nutrition

earlier, he would have had a better chance.

Every case is different, but common sense told me that if does not

gain weight for 2 years (she weighed 49 pounds) I have to do something. She

does not regret this surgery at all. We tried scandishakes and other high

calorie drinks first, but that got old. The feeding tube has been wonderful.

Good luck to you and your child

Sue

mom of 10 wcf, 11 wocf, 15 wocf

Smile and the whole world smiles with you........

[Guest guest]

My daughter is 10. She had the Mickey Button feeding tube put in October 5,

2001. She had not gained any weight for 2 years prior to getting the button

(feeding tube). Since that time, she has gained almost 10 pounds.

I, like you, was nervous about getting the feeding tube. Well, I shouldn't

have been. still plays softball (she loves to slide into homeplate),

swims, jumps on trampoline, goes to school, etc. And, she has not been in

the hospital but 1 time since the feeding tube was put in.

One thing our doctor and nutritionist explained was that is going to

be going through the normal changes kids have. We knew she wasn't getting

the nutrition she needed to grow. My oldest daughter started having her

cycle when she was 9 years old. The doctor was concerned that would

not be able to mature as " normal " kids without the proper nutrition. I

talked to a mother of a boy with cf who got a feeding tube when he was 15.

She said she wished he had gotten it sooner. He didn't develop as his

brothers did, but she feels that if they had gotten the proper nutrition

earlier, he would have had a better chance.

Every case is different, but common sense told me that if does not

gain weight for 2 years (she weighed 49 pounds) I have to do something. She

does not regret this surgery at all. We tried scandishakes and other high

calorie drinks first, but that got old. The feeding tube has been wonderful.

Good luck to you and your child

Sue

mom of 10 wcf, 11 wocf, 15 wocf

Smile and the whole world smiles with you........

[Guest guest]

My daughter is 10. She had the Mickey Button feeding tube put in October 5,

2001. She had not gained any weight for 2 years prior to getting the button

(feeding tube). Since that time, she has gained almost 10 pounds.

I, like you, was nervous about getting the feeding tube. Well, I shouldn't

have been. still plays softball (she loves to slide into homeplate),

swims, jumps on trampoline, goes to school, etc. And, she has not been in

the hospital but 1 time since the feeding tube was put in.

One thing our doctor and nutritionist explained was that is going to

be going through the normal changes kids have. We knew she wasn't getting

the nutrition she needed to grow. My oldest daughter started having her

cycle when she was 9 years old. The doctor was concerned that would

not be able to mature as " normal " kids without the proper nutrition. I

talked to a mother of a boy with cf who got a feeding tube when he was 15.

She said she wished he had gotten it sooner. He didn't develop as his

brothers did, but she feels that if they had gotten the proper nutrition

earlier, he would have had a better chance.

Every case is different, but common sense told me that if does not

gain weight for 2 years (she weighed 49 pounds) I have to do something. She

does not regret this surgery at all. We tried scandishakes and other high

calorie drinks first, but that got old. The feeding tube has been wonderful.

Good luck to you and your child

Sue

mom of 10 wcf, 11 wocf, 15 wocf

Smile and the whole world smiles with you........

[Guest guest]

.. I have to agree here. Cory does not have a G-tube but there are

many times I wish we had. He is 16 now and very assertive about not

wanting one. Weight has always been a HUGE issue with us. Even

today, drinking 7 cans of Ensure a day usually just helps maintain

his weight. Because of the body image is a big issue for Cory. At

16 he only beginning to show signs of puberty. It is hard to see his

12 year old brother to go through things he hasn't. Dealing with

teenage issues that we deal with now....I firmly beleive that many

things are much easier to get use to when they are younger than to

have to deal with them as teenagers. We already have had to deal

with the issues of getting the port and CFRD and it has been a

struggle. Getting the port was something we left up to Cory. He did

a little research and took about 9 months to decide. By doning it

that way, he has been much more acceting of it.

> One thing our doctor and nutritionist explained was that is

going to

> be going through the normal changes kids have. We knew she wasn't

getting

> the nutrition she needed to grow. My oldest daughter started

having her

> cycle when she was 9 years old. The doctor was concerned that

would

> not be able to mature as " normal " kids without the proper

nutrition. I

> talked to a mother of a boy with cf who got a feeding tube when he

was 15.

> She said she wished he had gotten it sooner. He didn't develop as

his

> brothers did, but she feels that if they had gotten the proper

nutrition

> earlier, he would have had a better chance.

>

[Guest guest]

.. I have to agree here. Cory does not have a G-tube but there are

many times I wish we had. He is 16 now and very assertive about not

wanting one. Weight has always been a HUGE issue with us. Even

today, drinking 7 cans of Ensure a day usually just helps maintain

his weight. Because of the body image is a big issue for Cory. At

16 he only beginning to show signs of puberty. It is hard to see his

12 year old brother to go through things he hasn't. Dealing with

teenage issues that we deal with now....I firmly beleive that many

things are much easier to get use to when they are younger than to

have to deal with them as teenagers. We already have had to deal

with the issues of getting the port and CFRD and it has been a

struggle. Getting the port was something we left up to Cory. He did

a little research and took about 9 months to decide. By doning it

that way, he has been much more acceting of it.

> One thing our doctor and nutritionist explained was that is

going to

> be going through the normal changes kids have. We knew she wasn't

getting

> the nutrition she needed to grow. My oldest daughter started

having her

> cycle when she was 9 years old. The doctor was concerned that

would

> not be able to mature as " normal " kids without the proper

nutrition. I

> talked to a mother of a boy with cf who got a feeding tube when he

was 15.

> She said she wished he had gotten it sooner. He didn't develop as

his

> brothers did, but she feels that if they had gotten the proper

nutrition

> earlier, he would have had a better chance.

>

[Guest guest]

.. I have to agree here. Cory does not have a G-tube but there are

many times I wish we had. He is 16 now and very assertive about not

wanting one. Weight has always been a HUGE issue with us. Even

today, drinking 7 cans of Ensure a day usually just helps maintain

his weight. Because of the body image is a big issue for Cory. At

16 he only beginning to show signs of puberty. It is hard to see his

12 year old brother to go through things he hasn't. Dealing with

teenage issues that we deal with now....I firmly beleive that many

things are much easier to get use to when they are younger than to

have to deal with them as teenagers. We already have had to deal

with the issues of getting the port and CFRD and it has been a

struggle. Getting the port was something we left up to Cory. He did

a little research and took about 9 months to decide. By doning it

that way, he has been much more acceting of it.

> One thing our doctor and nutritionist explained was that is

going to

> be going through the normal changes kids have. We knew she wasn't

getting

> the nutrition she needed to grow. My oldest daughter started

having her

> cycle when she was 9 years old. The doctor was concerned that

would

> not be able to mature as " normal " kids without the proper

nutrition. I

> talked to a mother of a boy with cf who got a feeding tube when he

was 15.

> She said she wished he had gotten it sooner. He didn't develop as

his

> brothers did, but she feels that if they had gotten the proper

nutrition

> earlier, he would have had a better chance.

>

[Guest guest]

thanks helps to hear and know this is a good thing

christy(18 months old daughter shianne) from indiana

[Guest guest]

Hi Cristy, We started on tube feeds 3 weeks ago. He has a NG tube{nose

to stomache.} I wish i could say we have had good results but we havent.The

tube has been vomited up 2 times and im supposed to put it back in tonight

but I am afraid of him getting so violently sick again. I think if he rejects

the tube again they will do a J tube. His reflux is very bad.My advice would

be to try the NG first ,if that doesnt work then go to the G tube. I have

heard alot of parents say the G tube is not so bad but it is scary for me as

well.My family doesnt think that is the right thing to do but they dont

understand or accept that this will help. I will try anything to get some

weight on him. All i can say is try not to get to stressed out because it is

a little overwhelming at first. Good luck to you, Janelle mom of w/cf

[Guest guest]

to christy and janelle,

hi just wanted to put in a word or two about the

feeding tube.. my son and grandson both have had their

g tubes for several years.. the tube feedings have

helped somewhat with helping them to put weight on

them..they are not a bad thing. i also am a nurse and

know that they are only wanting to put the g tubes in

to help them gain the weight that they so desperately

need to breathe.. it does take so many calories for

them to just breathe.. anyway just thought that i

would tell you that the g tubes are a good thing..

thank you mary mother of 18 yo wcf and grandmother of

4yo wcf...

--- izbirdeeb@... wrote:

> Hi Cristy, We started on tube feeds 3 weeks

> ago. He has a NG tube{nose

> to stomache.} I wish i could say we have had good

> results but we havent.The

> tube has been vomited up 2 times and im supposed to

> put it back in tonight

> but I am afraid of him getting so violently sick

> again. I think if he rejects

> the tube again they will do a J tube. His reflux is

> very bad.My advice would

> be to try the NG first ,if that doesnt work then go

> to the G tube. I have

> heard alot of parents say the G tube is not so bad

> but it is scary for me as

> well.My family doesnt think that is the right thing

> to do but they dont

> understand or accept that this will help. I will try

> anything to get some

> weight on him. All i can say is try not to get to

> stressed out because it is

> a little overwhelming at first. Good luck to you,

> Janelle mom of w/cf

>

>

> [Non-text portions of this message have been

> removed]

>

>

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