RE: Re: Feeds: do they ever learn to take food by mouth?

[Guest guest]

Just out of curiosity, what is the average time that our kids wear their

mic-key buttons? I'm so happy to hear about this little 10 monther not using

her g tube anymore, but on the other hand, am so saddened that my 17 monther

is so reliant on hers. I know she can take food by mouth... well her formula

Solid foods interest her, but the minute it is in her mouth, she " spits " it

out. This is such a drooly mess. She has proven on a few occasions that

taking her formula by mouth is just fine with her. She has taken each and

every feed for days at a time, then decides she's done doing it that way,

and forces us to use her tube again. We offer her a sippy cup at each feed,

and let her lead us. What she doesn't finish, we tube. This usually amounts

to 3/4 of her feed needing to be tubed. I know it is probably crazy for me

to ask, but do most CHARGEr's learn to eat by mouth, and what is this time

frame? I know these kids have their own rules...but, has anyone been down my

road, and had their child begin to eat by mouth?

Feeling a little whipped tonight after having to tube yet another meal. It

feels so defeating.....

, mommy to Meagan (CHaRgE) and 17 months, and big brother

3 1/2 years, married to the best daddy in the world for 9 years

-- Re: Trouble with feeds - vomitting daily

My Daughter is now 10 monthes old. She had a NG tube until she was 5

monthes old, then they put in a Gtube at 6 monthes old but she was

still refluxing like crazy until finally at 8 monthes old I screamed

and begged the doctors to put a GJ tube in (very conterversial) but

for my daughter it was the best thing ever. It gave her a change to

grow a little and guess what.... she is 10 monthes old and no longer

needs either !!! That little break her body got by not having to

handle the vomiting with the GJ tube allowed her to grow properly and

out grow the reflux (mostly)She completly drinks everything and eats

everything! There's hope! Hang in there! You'll get allot of

different ideas thats for sure. Some people have done the

fundoplication and I heard that's pretty good too but it is a very

big sergury and doesn't always work. Keep that in mind. Some people

don't like the idea of being on a pump for soo many hours with the GJ

tube and I totally agree but for me thank god it was only temperary

btu you know what... I couldn't take seeing my daughter vomit anymore

so the duration on the pump was worth it. Good luck !

[Guest guest]

Just out of curiosity, what is the average time that our kids wear their

mic-key buttons? I'm so happy to hear about this little 10 monther not using

her g tube anymore, but on the other hand, am so saddened that my 17 monther

is so reliant on hers. I know she can take food by mouth... well her formula

Solid foods interest her, but the minute it is in her mouth, she " spits " it

out. This is such a drooly mess. She has proven on a few occasions that

taking her formula by mouth is just fine with her. She has taken each and

every feed for days at a time, then decides she's done doing it that way,

and forces us to use her tube again. We offer her a sippy cup at each feed,

and let her lead us. What she doesn't finish, we tube. This usually amounts

to 3/4 of her feed needing to be tubed. I know it is probably crazy for me

to ask, but do most CHARGEr's learn to eat by mouth, and what is this time

frame? I know these kids have their own rules...but, has anyone been down my

road, and had their child begin to eat by mouth?

Feeling a little whipped tonight after having to tube yet another meal. It

feels so defeating.....

, mommy to Meagan (CHaRgE) and 17 months, and big brother

3 1/2 years, married to the best daddy in the world for 9 years

-- Re: Trouble with feeds - vomitting daily

My Daughter is now 10 monthes old. She had a NG tube until she was 5

monthes old, then they put in a Gtube at 6 monthes old but she was

still refluxing like crazy until finally at 8 monthes old I screamed

and begged the doctors to put a GJ tube in (very conterversial) but

for my daughter it was the best thing ever. It gave her a change to

grow a little and guess what.... she is 10 monthes old and no longer

needs either !!! That little break her body got by not having to

handle the vomiting with the GJ tube allowed her to grow properly and

out grow the reflux (mostly)She completly drinks everything and eats

everything! There's hope! Hang in there! You'll get allot of

different ideas thats for sure. Some people have done the

fundoplication and I heard that's pretty good too but it is a very

big sergury and doesn't always work. Keep that in mind. Some people

don't like the idea of being on a pump for soo many hours with the GJ

tube and I totally agree but for me thank god it was only temperary

btu you know what... I couldn't take seeing my daughter vomit anymore

so the duration on the pump was worth it. Good luck !

[Guest guest]

Just out of curiosity, what is the average time that our kids wear their

mic-key buttons? I'm so happy to hear about this little 10 monther not using

her g tube anymore, but on the other hand, am so saddened that my 17 monther

is so reliant on hers. I know she can take food by mouth... well her formula

Solid foods interest her, but the minute it is in her mouth, she " spits " it

out. This is such a drooly mess. She has proven on a few occasions that

taking her formula by mouth is just fine with her. She has taken each and

every feed for days at a time, then decides she's done doing it that way,

and forces us to use her tube again. We offer her a sippy cup at each feed,

and let her lead us. What she doesn't finish, we tube. This usually amounts

to 3/4 of her feed needing to be tubed. I know it is probably crazy for me

to ask, but do most CHARGEr's learn to eat by mouth, and what is this time

frame? I know these kids have their own rules...but, has anyone been down my

road, and had their child begin to eat by mouth?

Feeling a little whipped tonight after having to tube yet another meal. It

feels so defeating.....

, mommy to Meagan (CHaRgE) and 17 months, and big brother

3 1/2 years, married to the best daddy in the world for 9 years

-- Re: Trouble with feeds - vomitting daily

My Daughter is now 10 monthes old. She had a NG tube until she was 5

monthes old, then they put in a Gtube at 6 monthes old but she was

still refluxing like crazy until finally at 8 monthes old I screamed

and begged the doctors to put a GJ tube in (very conterversial) but

for my daughter it was the best thing ever. It gave her a change to

grow a little and guess what.... she is 10 monthes old and no longer

needs either !!! That little break her body got by not having to

handle the vomiting with the GJ tube allowed her to grow properly and

out grow the reflux (mostly)She completly drinks everything and eats

everything! There's hope! Hang in there! You'll get allot of

different ideas thats for sure. Some people have done the

fundoplication and I heard that's pretty good too but it is a very

big sergury and doesn't always work. Keep that in mind. Some people

don't like the idea of being on a pump for soo many hours with the GJ

tube and I totally agree but for me thank god it was only temperary

btu you know what... I couldn't take seeing my daughter vomit anymore

so the duration on the pump was worth it. Good luck !

[Guest guest]

im 21 and still on gtube feeds but dont give up never know

>

>

> Just out of curiosity, what is the average time that our kids wear their

> mic-key buttons? I'm so happy to hear about this little 10 monther not

> using

> her g tube anymore, but on the other hand, am so saddened that my 17

> monther

> is so reliant on hers. I know she can take food by mouth... well her

> formula

> Solid foods interest her, but the minute it is in her mouth, she " spits "

> it

> out. This is such a drooly mess. She has proven on a few occasions that

> taking her formula by mouth is just fine with her. She has taken each and

> every feed for days at a time, then decides she's done doing it that way,

> and forces us to use her tube again. We offer her a sippy cup at each

> feed,

> and let her lead us. What she doesn't finish, we tube. This usually

> amounts

> to 3/4 of her feed needing to be tubed. I know it is probably crazy for me

> to ask, but do most CHARGEr's learn to eat by mouth, and what is this time

> frame? I know these kids have their own rules...but, has anyone been down

> my

> road, and had their child begin to eat by mouth?

>

> Feeling a little whipped tonight after having to tube yet another meal. It

> feels so defeating.....

>

> , mommy to Meagan (CHaRgE) and 17 months, and big brother

>

> 3 1/2 years, married to the best daddy in the world for 9 years

>

> -- Re: Trouble with feeds - vomitting daily

>

> My Daughter is now 10 monthes old. She had a NG tube until she was 5

> monthes old, then they put in a Gtube at 6 monthes old but she was

> still refluxing like crazy until finally at 8 monthes old I screamed

> and begged the doctors to put a GJ tube in (very conterversial) but

> for my daughter it was the best thing ever. It gave her a change to

> grow a little and guess what.... she is 10 monthes old and no longer

> needs either !!! That little break her body got by not having to

> handle the vomiting with the GJ tube allowed her to grow properly and

> out grow the reflux (mostly)She completly drinks everything and eats

> everything! There's hope! Hang in there! You'll get allot of

> different ideas thats for sure. Some people have done the

> fundoplication and I heard that's pretty good too but it is a very

> big sergury and doesn't always work. Keep that in mind. Some people

> don't like the idea of being on a pump for soo many hours with the GJ

> tube and I totally agree but for me thank god it was only temperary

> btu you know what... I couldn't take seeing my daughter vomit anymore

> so the duration on the pump was worth it. Good luck !

>

>

[Guest guest]

im 21 and still on gtube feeds but dont give up never know

>

>

> Just out of curiosity, what is the average time that our kids wear their

> mic-key buttons? I'm so happy to hear about this little 10 monther not

> using

> her g tube anymore, but on the other hand, am so saddened that my 17

> monther

> is so reliant on hers. I know she can take food by mouth... well her

> formula

> Solid foods interest her, but the minute it is in her mouth, she " spits "

> it

> out. This is such a drooly mess. She has proven on a few occasions that

> taking her formula by mouth is just fine with her. She has taken each and

> every feed for days at a time, then decides she's done doing it that way,

> and forces us to use her tube again. We offer her a sippy cup at each

> feed,

> and let her lead us. What she doesn't finish, we tube. This usually

> amounts

> to 3/4 of her feed needing to be tubed. I know it is probably crazy for me

> to ask, but do most CHARGEr's learn to eat by mouth, and what is this time

> frame? I know these kids have their own rules...but, has anyone been down

> my

> road, and had their child begin to eat by mouth?

>

> Feeling a little whipped tonight after having to tube yet another meal. It

> feels so defeating.....

>

> , mommy to Meagan (CHaRgE) and 17 months, and big brother

>

> 3 1/2 years, married to the best daddy in the world for 9 years

>

> -- Re: Trouble with feeds - vomitting daily

>

> My Daughter is now 10 monthes old. She had a NG tube until she was 5

> monthes old, then they put in a Gtube at 6 monthes old but she was

> still refluxing like crazy until finally at 8 monthes old I screamed

> and begged the doctors to put a GJ tube in (very conterversial) but

> for my daughter it was the best thing ever. It gave her a change to

> grow a little and guess what.... she is 10 monthes old and no longer

> needs either !!! That little break her body got by not having to

> handle the vomiting with the GJ tube allowed her to grow properly and

> out grow the reflux (mostly)She completly drinks everything and eats

> everything! There's hope! Hang in there! You'll get allot of

> different ideas thats for sure. Some people have done the

> fundoplication and I heard that's pretty good too but it is a very

> big sergury and doesn't always work. Keep that in mind. Some people

> don't like the idea of being on a pump for soo many hours with the GJ

> tube and I totally agree but for me thank god it was only temperary

> btu you know what... I couldn't take seeing my daughter vomit anymore

> so the duration on the pump was worth it. Good luck !

>

>

[Guest guest]

-

Aubrie was off her tube at age 1.5 yrs. We're hearing more and more kids

getting off in infancy -- just my observation from the list. But many kids

go on thru the elementary years with their tubes. One girl in IL -- if I

remember right -- began oral eating at age 14 or something! I know you feel

like it will never end, but the fact that your little one is doing it

sometimes is really quite good. Hold on to the faith that she will get

there!

Michele W

mom to Aubrie 8 yrs CHARGE, 14 yrs and wife to DJ

[Guest guest]

-

Aubrie was off her tube at age 1.5 yrs. We're hearing more and more kids

getting off in infancy -- just my observation from the list. But many kids

go on thru the elementary years with their tubes. One girl in IL -- if I

remember right -- began oral eating at age 14 or something! I know you feel

like it will never end, but the fact that your little one is doing it

sometimes is really quite good. Hold on to the faith that she will get

there!

Michele W

mom to Aubrie 8 yrs CHARGE, 14 yrs and wife to DJ

[Guest guest]

Hi ,

My son will be 9 on May 8. He has just begun to eat by mouth. He had

severe reflux (ended with a button by 7 weeks old, and a fundo by 10 weeks

old and had to have it redone by 15 months old) and was NPO. They told me I

could not give him anything by mouth or he would just aspirate it and his

lungs had already been badly damaged. Over the years he had many swallow

studies all showing little improvement, and still being told do not feed

him, just do the oral motor and encourage what he can do. We use to push

him and it didn't work, because he physically couldn't handle the food. He

wanted to, he just couldn't without harming himself, and he told us that in

his many behavioral actions. Now he tells me verbally, he's a bright kid.

He has been in feeding therapy like I said for almost 9 years and has

progressed to be taking puree foods safely, and lots of it. We had weaned

him from the tube during the day recently for about 1.5 months and he got

sick and refused to eat. The only way I can explain it would be if you put

him in a room full of food and left him there, he would starve to death.

He is hungry, but not always. He has to be reminded to eat. He has to be

encouraged to eat the whole 6 oz. etc. He is currently working on chewing.

My point in telling you all this is that it depends on the severity of the

child's swallowing difficulty and reflux/GI status. The kids are all

different. Some are worse, some are better. Obviously my son got hit with

this bad, this is his worst problem.

Don't feel beaten by the g-tube. If it weren't for the tube, my son

couldn't work on the feeding to get stronger. He is not malnourished, he is

normal height, has a little extra weight, recovers from illness well which

is good for weaning the tube. If your daughter isn't eating all the time,

there is a real physical/neurological issue with her swallow she can't

handle yet. It does take time and it really sucks. The fact that she is

drinking her formula is phenomenal. One reason she could be backing off is

because she doesn't feel well. They can't always tell you. When my son

stopped eating it was because he had too much mucus to handle on top of the

regular food to swallow. Now he is back eating, but it isn't puddings and

yogurts it is ice creams and sherberts, because they are easier to handle.

He can't describe it well, he just says it's easier for him right now.

When my son was little I used to get so mad over the tube. I'm still mad

about it but you have to put yourself in your daughter's shoes which is so

hard to do, imagine swallowing and it going down the wrong pipe every time,

or having heart burn each time you ate, what ever the reason is, there is a

reason. Don't get discouraged. Think of the tube as a way to keep her

healthy when she is going through rough periods. Don't stop offering the

food. Maybe require her to take at least 2-3 bites and then she is done and

if she can take more then encourage that.

Sorry to ramble. This has been a very huge problem for us, just wanted to

share and show you that no matter how old they get, it isn't too late for

them to start eating.

Debbie Matasker

Re: Trouble with feeds - vomitting daily

My Daughter is now 10 monthes old. She had a NG tube until she was 5

monthes old, then they put in a Gtube at 6 monthes old but she was

still refluxing like crazy until finally at 8 monthes old I screamed

and begged the doctors to put a GJ tube in (very conterversial) but

for my daughter it was the best thing ever. It gave her a change to

grow a little and guess what.... she is 10 monthes old and no longer

needs either !!! That little break her body got by not having to

handle the vomiting with the GJ tube allowed her to grow properly and

out grow the reflux (mostly)She completly drinks everything and eats

everything! There's hope! Hang in there! You'll get allot of

different ideas thats for sure. Some people have done the

fundoplication and I heard that's pretty good too but it is a very

big sergury and doesn't always work. Keep that in mind. Some people

don't like the idea of being on a pump for soo many hours with the GJ

tube and I totally agree but for me thank god it was only temperary

btu you know what... I couldn't take seeing my daughter vomit anymore

so the duration on the pump was worth it. Good luck !

[Guest guest]

Hi ,

My son will be 9 on May 8. He has just begun to eat by mouth. He had

severe reflux (ended with a button by 7 weeks old, and a fundo by 10 weeks

old and had to have it redone by 15 months old) and was NPO. They told me I

could not give him anything by mouth or he would just aspirate it and his

lungs had already been badly damaged. Over the years he had many swallow

studies all showing little improvement, and still being told do not feed

him, just do the oral motor and encourage what he can do. We use to push

him and it didn't work, because he physically couldn't handle the food. He

wanted to, he just couldn't without harming himself, and he told us that in

his many behavioral actions. Now he tells me verbally, he's a bright kid.

He has been in feeding therapy like I said for almost 9 years and has

progressed to be taking puree foods safely, and lots of it. We had weaned

him from the tube during the day recently for about 1.5 months and he got

sick and refused to eat. The only way I can explain it would be if you put

him in a room full of food and left him there, he would starve to death.

He is hungry, but not always. He has to be reminded to eat. He has to be

encouraged to eat the whole 6 oz. etc. He is currently working on chewing.

My point in telling you all this is that it depends on the severity of the

child's swallowing difficulty and reflux/GI status. The kids are all

different. Some are worse, some are better. Obviously my son got hit with

this bad, this is his worst problem.

Don't feel beaten by the g-tube. If it weren't for the tube, my son

couldn't work on the feeding to get stronger. He is not malnourished, he is

normal height, has a little extra weight, recovers from illness well which

is good for weaning the tube. If your daughter isn't eating all the time,

there is a real physical/neurological issue with her swallow she can't

handle yet. It does take time and it really sucks. The fact that she is

drinking her formula is phenomenal. One reason she could be backing off is

because she doesn't feel well. They can't always tell you. When my son

stopped eating it was because he had too much mucus to handle on top of the

regular food to swallow. Now he is back eating, but it isn't puddings and

yogurts it is ice creams and sherberts, because they are easier to handle.

He can't describe it well, he just says it's easier for him right now.

When my son was little I used to get so mad over the tube. I'm still mad

about it but you have to put yourself in your daughter's shoes which is so

hard to do, imagine swallowing and it going down the wrong pipe every time,

or having heart burn each time you ate, what ever the reason is, there is a

reason. Don't get discouraged. Think of the tube as a way to keep her

healthy when she is going through rough periods. Don't stop offering the

food. Maybe require her to take at least 2-3 bites and then she is done and

if she can take more then encourage that.

Sorry to ramble. This has been a very huge problem for us, just wanted to

share and show you that no matter how old they get, it isn't too late for

them to start eating.

Debbie Matasker

Re: Trouble with feeds - vomitting daily

My Daughter is now 10 monthes old. She had a NG tube until she was 5

monthes old, then they put in a Gtube at 6 monthes old but she was

still refluxing like crazy until finally at 8 monthes old I screamed

and begged the doctors to put a GJ tube in (very conterversial) but

for my daughter it was the best thing ever. It gave her a change to

grow a little and guess what.... she is 10 monthes old and no longer

needs either !!! That little break her body got by not having to

handle the vomiting with the GJ tube allowed her to grow properly and

out grow the reflux (mostly)She completly drinks everything and eats

everything! There's hope! Hang in there! You'll get allot of

different ideas thats for sure. Some people have done the

fundoplication and I heard that's pretty good too but it is a very

big sergury and doesn't always work. Keep that in mind. Some people

don't like the idea of being on a pump for soo many hours with the GJ

tube and I totally agree but for me thank god it was only temperary

btu you know what... I couldn't take seeing my daughter vomit anymore

so the duration on the pump was worth it. Good luck !

[Guest guest]

Thank you, Debbie. I'm currently fighting to have a feeding therapist

assigned to me. We have recently been switched to DDD, and they tell me they

are understaffed on feeding therapists. It could take a year or more to have

one assigned to us. What things in therapy seemed to work for you families

out there who have had success in weaning from the tube?

, mommy to Meagan (CHaRgE) and 17 months, and big brother

3 1/2 years, married to the best daddy in the world for 9 years

-- RE: Re: Feeds: do they ever learn to take food by mouth?

Hi ,

My son will be 9 on May 8. He has just begun to eat by mouth. He had

severe reflux (ended with a button by 7 weeks old, and a fundo by 10 weeks

old and had to have it redone by 15 months old) and was NPO. They told me I

could not give him anything by mouth or he would just aspirate it and his

lungs had already been badly damaged. Over the years he had many swallow

studies all showing little improvement, and still being told do not feed

him, just do the oral motor and encourage what he can do. We use to push

him and it didn't work, because he physically couldn't handle the food. He

wanted to, he just couldn't without harming himself, and he told us that in

his many behavioral actions. Now he tells me verbally, he's a bright kid.

He has been in feeding therapy like I said for almost 9 years and has

progressed to be taking puree foods safely, and lots of it. We had weaned

him from the tube during the day recently for about 1.5 months and he got

sick and refused to eat. The only way I can explain it would be if you put

him in a room full of food and left him there, he would starve to death.

He is hungry, but not always. He has to be reminded to eat. He has to be

encouraged to eat the whole 6 oz. etc. He is currently working on chewing.

My point in telling you all this is that it depends on the severity of the

child's swallowing difficulty and reflux/GI status. The kids are all

different. Some are worse, some are better. Obviously my son got hit with

this bad, this is his worst problem.

Don't feel beaten by the g-tube. If it weren't for the tube, my son

couldn't work on the feeding to get stronger. He is not malnourished, he is

normal height, has a little extra weight, recovers from illness well which

is good for weaning the tube. If your daughter isn't eating all the time,

there is a real physical/neurological issue with her swallow she can't

handle yet. It does take time and it really sucks. The fact that she is

drinking her formula is phenomenal. One reason she could be backing off is

because she doesn't feel well. They can't always tell you. When my son

stopped eating it was because he had too much mucus to handle on top of the

regular food to swallow. Now he is back eating, but it isn't puddings and

yogurts it is ice creams and sherberts, because they are easier to handle.

He can't describe it well, he just says it's easier for him right now.

When my son was little I used to get so mad over the tube. I'm still mad

about it but you have to put yourself in your daughter's shoes which is so

hard to do, imagine swallowing and it going down the wrong pipe every time,

or having heart burn each time you ate, what ever the reason is, there is a

reason. Don't get discouraged. Think of the tube as a way to keep her

healthy when she is going through rough periods. Don't stop offering the

food. Maybe require her to take at least 2-3 bites and then she is done and

if she can take more then encourage that.

Sorry to ramble. This has been a very huge problem for us, just wanted to

share and show you that no matter how old they get, it isn't too late for

them to start eating.

Debbie Matasker

[Guest guest]

-

Have you contacted a legislator about this? It's unacceptable that there is

a waiting list for an essential need like feeding therapy. Contact your

local ARC as well to see if they can help connect you with any advocacy

support to push this process along. It may be that even with legislative

and advocacy help you still won't get it sooner, but there's a reasonable

chance you will -- and that others then will too.

Michele W

mom to Aubrie 8 yrs CHARGE, 14 yrs and wife to DJ