Re: new to group/feeding issues

[Guest guest]

Hi and welcome to the list.

I almost hesitated in replying, just because I am sure I will

not be of much encouragement, but maybe. My son is now 11, got his

G Tube shortly after birth. We did much the same as you do, which is

perfect. Every meal food is offered first. We all eat

at the table, together. Meals are a big deal . While he

has made great strides, he is still G tube dependant at this time.

He does eat orally, but never enough. He is a very picky eater, and

it has to be when he chooses. Some days he eats a lot. Other days,

nothing orally.

It use to be a major issue for me, and looking back I can see

that when I pushed it hard, he pushed back harder. Now we are more

relaxed about it, he does better with eating, and we just figure some day, in

his time, he will finally decide eating is fun, and the heck with this feeding

tube thing.

We have had awesome therapy, and therapists. We have had

crappy ones. We have done talk tools, we have done so many various

feeding therapies. Not one thing in particular has worked for

us. We tried what the docs recommended, no g tube feedings at all

during the day, only oral, and he would get so hungry he would eventually eat,

they were wrong. It was either continue and risk serious medical

complications or give that up. We quit.

I just want to encourage you to keep trying, keep it routine,

but most of all, relax about it. I would stress myself out so badly

about it, it was not funny. All for nothing. My ped

told me one day just in casual conversation (we are also good friends) that he

was way more worried about me than . That I almost seemed to

take it personal that he was not eating orally, and he was right.

He was very right. Once I wrapped my head around all that, things

got better. But at 11 he is still g tube dependant.

Good luck, and try to remember, it is just a way to get

nourishment, it is not a big deal. Hope this was in some way

helpful to you, and not a discouragement, it was not meant to be that at all.

Romero

Who Dat! Superbowl Bound Baby.

From:

DownSyndromeInfoExchange

[mailto:DownSyndromeInfoExchange ] On Behalf Of

O'Callaghan

Sent: Thursday, January 28, 2010 1:32 PM

To: DownSyndromeInfoExchange

Subject: [DownSyndromeInfoExchange] new to group/feeding issues

Hi,

I’m sorry to jump in with a new

topic- I joined the listserve recently, but haven’t had time to

post!

My two year old, Tom, is the

youngest of our five children and has DS. I am interested in issues

pertaining to DS generally, but right now Tommy’s big issue is

feeding. He needed a g-tube around 1 year because he was refusing to eat

– he had severe oral aversions likely due to problems with

aspiration.

After his heart repair in November of

2008, we were hoping to help him become strong and healthy enough to eat.

We have made some progress- he accepts small amounts of pureed foods.

However, he can’t handle texture, and won’t put any food in his

mouth himself. He has a hard time drinking from straw, cup etc, and will

only sometimes accept liquids from a medicine dropper. In general

he doesn’t seem much interested in food at all. We only

g-tube-feed him in high chair after oral feeding in hopes he will make

the connection.

At any rate, I was wondering if anyone

on the listserve has experience w/transitioning from g-tube to oral feeding?

Both his OT and speech therapist work on feeding, but I’m starting to get

discouraged because it doesn’t seem like there’s much

progress. I saw an earlier post about hypothyroidism causing oral

aversions, but his thyroid checked out normal last week.

I would appreciate hearing from anyone who has experience in this area.

Thanks so much!

O’Callaghan

[Guest guest]

I'm not sure what state you're in but I'm in TX and in Dallas they have a behavioral feeding program at Our Children's House at Baylor.  It's supposed to be a really great program with a lot of success.  My 2 year old Aimee (who is failure to thrive) is about to enter the program in a few weeks.  They have told me that there is sometimes success with this behavioral feeding method when kids haven't been successful with traditional therapy.  I wonder if there is a similar program in your area?

 

~

 

Hi, 

 

I’m sorry to jump in with a new topic- I joined the listserve recently, but haven’t had time to post!    

 

 My two year old, Tom,  is the youngest of our five children and has DS.  I am interested in issues pertaining to DS generally, but right now Tommy’s big issue is feeding.  He needed a g-tube around 1 year because he was refusing to eat – he had severe oral aversions likely due to problems with aspiration.    

 

After his heart repair in November of 2008, we were hoping to help him become strong and healthy enough to eat.  We have made some progress- he accepts small amounts of pureed foods.  However, he can’t handle texture, and won’t put any food in his mouth himself.  He has a hard time drinking from straw, cup etc, and will only sometimes accept liquids from a medicine dropper.   In general he doesn’t seem much interested in food at all.    We only  g-tube-feed him in high chair after oral feeding in hopes he will make the connection.  

 

At any rate, I was wondering if anyone on the listserve has experience w/transitioning from g-tube to oral feeding?   Both his OT and speech therapist work on feeding, but I’m starting to get discouraged because it doesn’t seem like there’s much progress.  I saw an earlier post about hypothyroidism causing oral aversions,  but his thyroid checked out normal last week.    I would appreciate hearing from anyone who has experience in this area. 

 

Thanks so much!

 

O’Callaghan

 

 

[Guest guest]

I am in Louisiana. I have considered that program, I think it

would require actually moving there and staying in house for 6 weeks or more.

Romero

Who Dat! Superbowl Bound Baby.

From:

DownSyndromeInfoExchange

[mailto:DownSyndromeInfoExchange ] On Behalf Of

Sent: Thursday, January 28, 2010 6:00 PM

To: DownSyndromeInfoExchange

Subject: Re: [DownSyndromeInfoExchange] new to group/feeding issues

I'm not sure what state you're in but I'm in TX and in

Dallas they have a behavioral feeding program at Our Children's House at

Baylor. It's supposed to be a really great program with a lot of

success. My 2 year old Aimee (who is failure to thrive) is about to enter

the program in a few weeks. They have told me that there is sometimes

success with this behavioral feeding method when kids haven't been successful

with traditional therapy. I wonder if there is a similar program in your

area?

~

Hi,

I’m sorry to

jump in with a new topic- I joined the listserve recently, but haven’t had time

to post!

My two

year old, Tom, is the youngest of our five children and has DS. I

am interested in issues pertaining to DS generally, but right now Tommy’s big

issue is feeding. He needed a g-tube around 1 year because he was

refusing to eat – he had severe oral aversions likely due to problems with

aspiration.

After his heart

repair in November of 2008, we were hoping to help him become strong and

healthy enough to eat. We have made some progress- he accepts small

amounts of pureed foods. However, he can’t handle texture, and won’t put

any food in his mouth himself. He has a hard time drinking from straw,

cup etc, and will only sometimes accept liquids from a medicine

dropper. In general he doesn’t seem much interested in food at

all. We only g-tube-feed him in high chair after oral

feeding in hopes he will make the connection.

At any rate, I

was wondering if anyone on the listserve has experience w/transitioning from

g-tube to oral feeding? Both his OT and speech therapist work on

feeding, but I’m starting to get discouraged because it doesn’t seem like

there’s much progress. I saw an earlier post about hypothyroidism causing

oral aversions, but his thyroid checked out normal last

week. I would appreciate hearing from anyone who has

experience in this area.

Thanks so much!

O’Callaghan

[Guest guest]

Hi , Thank you for your honest answer! I guess that

at the back of my mind (but I didn’t want to ask!) was whether it was

possible he may be g-tube dependent for years…. Your answer helped in that

I realize that even in the worst case scenario (long term g-tube), you can

still have a good life, and it’s not the end of the world!

Also, it’s nice to know that you, too, have tried

everything, and still have major feeding issues. Sometime I worry it’s

me not trying hard enough, doing enough research, finding right therapy,

etc. I will get really gung-ho for a while, try

to be consistent, use all the right methods, etc., and find we are no farther

ahead than when we started….

Anyway, I’ll keep trying, but try not to let it dominate

our lives!

Thanks again,

From: DownSyndromeInfoExchange

[mailto:DownSyndromeInfoExchange ] On Behalf Of

Romero

Sent: Thursday, January 28, 2010 4:31 PM

To: DownSyndromeInfoExchange

Subject: RE: [DownSyndromeInfoExchange] new to group/feeding issues

Hi and welcome to the list.

I almost hesitated in replying, just

because I am sure I will not be of much encouragement, but maybe.

My son is now 11, got his G Tube shortly after birth. We did much the

same as you do, which is perfect. Every meal food is offered

first. We all eat at the table, together. Meals are a

big deal . While he has made great strides, he is still G tube

dependant at this time. He does eat orally, but never enough.

He is a very picky eater, and it has to be when he chooses. Some

days he eats a lot. Other days, nothing orally.

It use to be a major issue for me, and

looking back I can see that when I pushed it hard, he pushed back

harder. Now we are more relaxed about it, he does better with

eating, and we just figure some day, in his time, he will finally decide eating

is fun, and the heck with this feeding tube thing.

We have had awesome therapy, and

therapists. We have had crappy ones. We have done talk tools, we

have done so many various feeding therapies. Not one thing in

particular has worked for us. We tried what the docs recommended,

no g tube feedings at all during the day, only oral, and he would get so hungry

he would eventually eat, they were wrong. It was either continue

and risk serious medical complications or give that up. We

quit.

I just want to encourage you to keep

trying, keep it routine, but most of all, relax about it. I would

stress myself out so badly about it, it was not funny. All for

nothing. My ped told me one day just in casual conversation (we are

also good friends) that he was way more worried about me than .

That I almost seemed to take it personal that he was not eating orally, and he

was right. He was very right. Once I wrapped my head

around all that, things got better. But at 11 he is still g tube

dependant.

Good luck, and try to remember, it is

just a way to get nourishment, it is not a big deal. Hope this was

in some way helpful to you, and not a discouragement, it was not meant to be

that at all.

Romero

Who

Dat! Superbowl Bound Baby.

From:

DownSyndromeInfoExchange [mailto:DownSyndromeInfoExchange ]

On Behalf Of O'Callaghan

Sent: Thursday, January 28, 2010 1:32 PM

To: DownSyndromeInfoExchange

Subject: [DownSyndromeInfoExchange] new to group/feeding issues

Hi,

I’m sorry to jump in with a new

topic- I joined the listserve recently, but haven’t had time to

post!

My two year old, Tom, is the

youngest of our five children and has DS. I am interested in issues

pertaining to DS generally, but right now Tommy’s big issue is

feeding. He needed a g-tube around 1 year because he was refusing to eat

– he had severe oral aversions likely due to problems with

aspiration.

After his heart repair in November of

2008, we were hoping to help him become strong and healthy enough to eat.

We have made some progress- he accepts small amounts of pureed foods.

However, he can’t handle texture, and won’t put any food in his

mouth himself. He has a hard time drinking from straw, cup etc, and will

only sometimes accept liquids from a medicine dropper. In general

he doesn’t seem much interested in food at all. We only

g-tube-feed him in high chair after oral feeding in hopes he will make

the connection.

At any rate, I was wondering if anyone

on the listserve has experience w/transitioning from g-tube to oral

feeding? Both his OT and speech therapist work on feeding, but

I’m starting to get discouraged because it doesn’t seem like

there’s much progress. I saw an earlier post about hypothyroidism

causing oral aversions, but his thyroid checked out normal last

week. I would appreciate hearing from anyone who has

experience in this area.

Thanks so much!

O’Callaghan

[Guest guest]

Hi , I’m in South Bend, IN, which is too small to have

a center w/ a feeding program, but I could look into a feeding program in

Chicago or Indianapolis (the nearest big cities). Thanks for the advice!

From: DownSyndromeInfoExchange

[mailto:DownSyndromeInfoExchange ] On Behalf Of

Sent: Thursday, January 28, 2010 7:00 PM

To: DownSyndromeInfoExchange

Subject: Re: [DownSyndromeInfoExchange] new to group/feeding issues

I'm not sure what state you're in but I'm in TX and in

Dallas they have a behavioral feeding program at Our Children's House at

Baylor. It's supposed to be a really great program with a lot of

success. My 2 year old Aimee (who is failure to thrive) is about to enter

the program in a few weeks. They have told me that there is sometimes

success with this behavioral feeding method when kids haven't been successful

with traditional therapy. I wonder if there is a similar program in your

area?

~

Hi,

I’m sorry to

jump in with a new topic- I joined the listserve recently, but haven’t had time

to post!

My two

year old, Tom, is the youngest of our five children and has DS. I

am interested in issues pertaining to DS generally, but right now Tommy’s big

issue is feeding. He needed a g-tube around 1 year because he was refusing

to eat – he had severe oral aversions likely due to problems with

aspiration.

After his heart

repair in November of 2008, we were hoping to help him become strong and

healthy enough to eat. We have made some progress- he accepts small

amounts of pureed foods. However, he can’t handle texture, and won’t put

any food in his mouth himself. He has a hard time drinking from straw,

cup etc, and will only sometimes accept liquids from a medicine

dropper. In general he doesn’t seem much interested in food at

all. We only g-tube-feed him in high chair after oral

feeding in hopes he will make the connection.

At any rate, I

was wondering if anyone on the listserve has experience w/transitioning from

g-tube to oral feeding? Both his OT and speech therapist work on

feeding, but I’m starting to get discouraged because it doesn’t seem like

there’s much progress. I saw an earlier post about hypothyroidism causing

oral aversions, but his thyroid checked out normal last

week. I would appreciate hearing from anyone who has

experience in this area.

Thanks so much!

O’Callaghan

[Guest guest]

annie has a g-tube - just for liquids but we found by having her at the table from the time she could sit in the highchairshe was at the meals, she had a plate or bowl in front of her with one or two bites at first - we did not push just let her do itshe is 8 and half now and out of my 3 special needs kiddos she is the best eater - still my smallest we did the same with michael who no longer has a g-tube - he is 6 - em did not have a tube but had never sat at the table with family till she came here at almost 6 - did the same with her - we taught one of our older ones who had a central line to eat - got rid of that line at about 9 half - by doing the sameour jeff did not start food due to many allergies - till like 4 almost 5 we always had him sitting with us even though they

did not eat just for the being with us talking - its very hard not to push - but think of it this way these kids have so little control over anything in their lives except eating and well toileting and no matter what those are the 2 things you will lose at every time - guaranteedpersonally I would try to relax - make it matter of fact - no pushing annie can do anything any other kid can do - we just are alot more careful esp at the lake - we have tape over the g-tube if she is in the water or even think she might be - even on the boat - taking no chances - and I check the tape every half hour or so - it a tape much like the nasty tape they use over the iv's to hold them in place - it works - we used it on our daughter with a central line though it was our own pool - not the lake - to me that was too risky - annie for what ever reason when she drinks thin liquids with cough choke sputter, she aspirates thin liquids - she still will try -

from time to time but we gave up the whole pushing liquids - she got so sad because she could not do it and would just weep - we hugged her and said that the cup is in your drawer if you want to try you need to get it - so far she just leaves it there - though at the school when they do snacks - her teacher will put like 1/2 inch of water in it and she will pretend to sip it just like the other kids. teacher says she never drinks it - one time it was empty and they were so excited - she did not cough etc but then looked at her dress and it was down the front - annie just smiled at her - the teacher apologized for the dress getting wet like several times and annie just grinned I said its not a problem - end of power play if you ask me - it was like well look we taught her to drink when you could not - still makes me smile - annie is one smart little girl - that was the end of the pressure at school - to me if its not life and death - just relax

and enjoy and try not to worry about it - easier said than done some how it gets into our brains that we have failed and mommies are not supposed to they are supposed to fix all that is wrong - sometimes we have to just accept it and move on - been there done that myself countless of times esp when you get kids that someone else has damaged and your trying hard to make it right - roxTo: DownSyndromeInfoExchange Sent: Fri, January 29, 2010 7:15:02

AMSubject: RE: [DownSyndromeInfoExchange] new to group/feeding issues

Hi , Thank you for your honest answer! I guess that

at the back of my mind (but I didn’t want to ask!) was whether it was

possible he may be g-tube dependent for years…. Your answer helped in that

I realize that even in the worst case scenario (long term g-tube), you can

still have a good life, and it’s not the end of the world! Also, it’s nice to know that you, too, have tried

everything, and still have major feeding issues. Sometime I worry it’s

me not trying hard enough, doing enough research, finding right therapy,

etc. I will get really gung-ho for a while, try

to be consistent, use all the right methods, etc., and find we are no farther

ahead than when we started…. Anyway, I’ll keep trying, but try not to let it dominate

our lives! Thanks again,

From: DownSyndromeInfoExc hange@yahoogroup s.com

[mailto:DownSyndrom eInfoExchange@ yahoogroups. com] On Behalf Of

Romero

Sent: Thursday, January 28, 2010 4:31 PM

To: DownSyndromeInfoExc hange@yahoogroup s.com

Subject: RE: [DownSyndromeInfoEx change] new to group/feeding issues

Hi and welcome to the list. I almost hesitated in replying, just

because I am sure I will not be of much encouragement, but maybe.

My son is now 11, got his G Tube shortly after birth. We did much the

same as you do, which is perfect. Every meal food is offered

first. We all eat at the table, together. Meals are a

big deal . While he has made great strides, he is still G tube

dependant at this time. He does eat orally, but never enough.

He is a very picky eater, and it has to be when he chooses. Some

days he eats a lot. Other days, nothing orally. It use to be a major issue for me, and

looking back I can see that when I pushed it hard, he pushed back

harder. Now we are more relaxed about it, he does better with

eating, and we just figure some day, in his time, he will finally decide eating

is fun, and the heck with this feeding tube thing. We have had awesome therapy, and

therapists. We have had crappy ones. We have done talk tools, we

have done so many various feeding therapies. Not one thing in

particular has worked for us. We tried what the docs recommended,

no g tube feedings at all during the day, only oral, and he would get so hungry

he would eventually eat, they were wrong. It was either continue

and risk serious medical complications or give that up. We

quit. I just want to encourage you to keep

trying, keep it routine, but most of all, relax about it. I would

stress myself out so badly about it, it was not funny. All for

nothing. My ped told me one day just in casual conversation (we are

also good friends) that he was way more worried about me than .

That I almost seemed to take it personal that he was not eating orally, and he

was right. He was very right. Once I wrapped my head

around all that, things got better. But at 11 he is still g tube

dependant. Good luck, and try to remember, it is

just a way to get nourishment, it is not a big deal. Hope this was

in some way helpful to you, and not a discouragement, it was not meant to be

that at all.

Romero Who

Dat! Superbowl Bound Baby.

From:

DownSyndromeInfoExc hange@yahoogroup s.com [mailto:DownSyndrom eInfoExchange@ yahoogroups. com]

On Behalf Of O'Callaghan

Sent: Thursday, January 28, 2010 1:32 PM

To: DownSyndromeInfoExc hange@yahoogroup s.com

Subject: [DownSyndromeInfoEx change] new to group/feeding issues

Hi, I’m sorry to jump in with a new

topic- I joined the listserve recently, but haven’t had time to

post! My two year old, Tom, is the

youngest of our five children and has DS. I am interested in issues

pertaining to DS generally, but right now Tommy’s big issue is

feeding. He needed a g-tube around 1 year because he was refusing to eat

– he had severe oral aversions likely due to problems with

aspiration. After his heart repair in November of

2008, we were hoping to help him become strong and healthy enough to eat.

We have made some progress- he accepts small amounts of pureed foods.

However, he can’t handle texture, and won’t put any food in his

mouth himself. He has a hard time drinking from straw, cup etc, and will

only sometimes accept liquids from a medicine dropper. In general

he doesn’t seem much interested in food at all. We only

g-tube-feed him in high chair after oral feeding in hopes he will make

the connection. At any rate, I was wondering if anyone

on the listserve has experience w/transitioning from g-tube to oral

feeding? Both his OT and speech therapist work on feeding, but

I’m starting to get discouraged because it doesn’t seem like

there’s much progress. I saw an earlier post about hypothyroidism

causing oral aversions, but his thyroid checked out normal last

week. I would appreciate hearing from anyone who has

experience in this area. Thanks so much! O’Callaghan

[Guest guest]

Yes, it does require that.  I'll be staying there with my daughter and my husband is getting FMLA so he can stay home with our sons.  It's a big commitment.  But, they have a lot of success so we feel like it would be worth it.  I'll let you know how it goes.

 

~

 

I am in Louisiana.   I have considered that program,  I think it would require actually moving there and staying in house for 6 weeks or more.  

 

Romero

Who Dat!   Superbowl Bound Baby.

 

From: DownSyndromeInfoExchange [mailto:DownSyndromeInfoExchange ] On Behalf Of

Sent: Thursday, January 28, 2010 6:00 PMTo: DownSyndromeInfoExchange Subject: Re: [DownSyndromeInfoExchange] new to group/feeding issues

 

 

I'm not sure what state you're in but I'm in TX and in Dallas they have a behavioral feeding program at Our Children's House at Baylor.  It's supposed to be a really great program with a lot of success.  My 2 year old Aimee (who is failure to thrive) is about to enter the program in a few weeks.  They have told me that there is sometimes success with this behavioral feeding method when kids haven't been successful with traditional therapy.  I wonder if there is a similar program in your area?

 

~

 

Hi, 

 

I’m sorry to jump in with a new topic- I joined the listserve recently, but haven’t had time to post!    

 

 My two year old, Tom,  is the youngest of our five children and has DS.  I am interested in issues pertaining to DS generally, but right now Tommy’s big issue is feeding.  He needed a g-tube around 1 year because he was refusing to eat – he had severe oral aversions likely due to problems with aspiration.    

 

After his heart repair in November of 2008, we were hoping to help him become strong and healthy enough to eat.  We have made some progress- he accepts small amounts of pureed foods.  However, he can’t handle texture, and won’t put any food in his mouth himself.  He has a hard time drinking from straw, cup etc, and will only sometimes accept liquids from a medicine dropper.   In general he doesn’t seem much interested in food at all.    We only  g-tube-feed him in high chair after oral feeding in hopes he will make the connection.  

 

At any rate, I was wondering if anyone on the listserve has experience w/transitioning from g-tube to oral feeding?   Both his OT and speech therapist work on feeding, but I’m starting to get discouraged because it doesn’t seem like there’s much progress.  I saw an earlier post about hypothyroidism causing oral aversions,  but his thyroid checked out normal last week.    I would appreciate hearing from anyone who has experience in this area. 

 

Thanks so much!

 

O’Callaghan

 

 

 

[Guest guest]

I have heard that there are 10 of these behavioral feeding programs in the country.  I don't know where the others are.  I was just so thrilled to find out we had one about 40 minutes away from us. 

 

I hope you can find something that works for your son.

 

~

 

Hi ,    I’m in South Bend, IN, which is too small to have a center w/ a  feeding program, but I could look into a feeding program in Chicago or Indianapolis (the nearest big cities).  Thanks for the advice!   

[Guest guest]

I am so glad that you got from my email what I meant to

convey. I spent a lot of time thinking it was me, and not doing enough, or

pushing too hard, etc… If you want to contact me privately and talk anytime

my email is noliptoday@...

and I will be happy to share my phone number with you privately. Some days it

just helps to just talk.

Hugs and welcome.

Romero

Who Dat! Superbowl Bound Baby.

From:

DownSyndromeInfoExchange

[mailto:DownSyndromeInfoExchange ] On Behalf Of

O'Callaghan

Sent: Friday, January 29, 2010 7:15 AM

To: DownSyndromeInfoExchange

Subject: RE: [DownSyndromeInfoExchange] new to group/feeding issues

Hi , Thank you for your honest

answer! I guess that at the back of my mind (but I didn’t want to ask!)

was whether it was possible he may be g-tube dependent for years…. Your answer

helped in that I realize that even in the worst case scenario (long term

g-tube), you can still have a good life, and it’s not the end of the world!

Also, it’s nice to know that you, too,

have tried everything, and still have major feeding issues. Sometime I

worry it’s me not trying hard enough, doing enough research, finding right

therapy, etc. I will get really gung-ho for a

while, try to be consistent, use all the right methods, etc., and find we are

no farther ahead than when we started….

Anyway, I’ll keep trying, but try not to

let it dominate our lives!

Thanks again,

From:

DownSyndromeInfoExchange [mailto:DownSyndromeInfoExchange ]

On Behalf Of Romero

Sent: Thursday, January 28, 2010 4:31 PM

To: DownSyndromeInfoExchange

Subject: RE: [DownSyndromeInfoExchange] new to group/feeding issues

Hi and welcome to the list.

I almost hesitated in replying, just

because I am sure I will not be of much encouragement, but maybe.

My son is now 11, got his G Tube shortly after birth. We did much the

same as you do, which is perfect. Every meal food is offered

first. We all eat at the table, together. Meals are a

big deal . While he has made great strides, he is still G tube

dependant at this time. He does eat orally, but never

enough. He is a very picky eater, and it has to be when he

chooses. Some days he eats a lot. Other days, nothing

orally.

It use to be a major issue for me, and

looking back I can see that when I pushed it hard, he pushed back

harder. Now we are more relaxed about it, he does better with

eating, and we just figure some day, in his time, he will finally decide eating

is fun, and the heck with this feeding tube thing.

We have had awesome therapy, and

therapists. We have had crappy ones. We have done talk tools, we

have done so many various feeding therapies. Not one thing in

particular has worked for us. We tried what the docs recommended,

no g tube feedings at all during the day, only oral, and he would get so hungry

he would eventually eat, they were wrong. It was either continue

and risk serious medical complications or give that up. We

quit.

I just want to encourage you to keep

trying, keep it routine, but most of all, relax about it. I would

stress myself out so badly about it, it was not funny. All for

nothing. My ped told me one day just in casual conversation (we are

also good friends) that he was way more worried about me than .

That I almost seemed to take it personal that he was not eating orally, and he

was right. He was very right. Once I wrapped my head

around all that, things got better. But at 11 he is still g tube

dependant.

Good luck, and try to remember, it is

just a way to get nourishment, it is not a big deal. Hope this was

in some way helpful to you, and not a discouragement, it was not meant to be

that at all.

Romero

Who

Dat! Superbowl Bound Baby.

From:

DownSyndromeInfoExchange [mailto:DownSyndromeInfoExchange ]

On Behalf Of O'Callaghan

Sent: Thursday, January 28, 2010 1:32 PM

To: DownSyndromeInfoExchange

Subject: [DownSyndromeInfoExchange] new to group/feeding issues

Hi,

I’m sorry to jump in with a new topic- I

joined the listserve recently, but haven’t had time to post!

My two year old, Tom, is the

youngest of our five children and has DS. I am interested in issues

pertaining to DS generally, but right now Tommy’s big issue is feeding.

He needed a g-tube around 1 year because he was refusing to eat – he had severe

oral aversions likely due to problems with aspiration.

After his heart repair in November of

2008, we were hoping to help him become strong and healthy enough to eat.

We have made some progress- he accepts small amounts of pureed foods.

However, he can’t handle texture, and won’t put any food in his mouth himself.

He has a hard time drinking from straw, cup etc, and will only sometimes accept

liquids from a medicine dropper. In general he doesn’t seem much

interested in food at all. We only g-tube-feed him in

high chair after oral feeding in hopes he will make the connection.

At any rate, I was wondering if anyone

on the listserve has experience w/transitioning from g-tube to oral

feeding? Both his OT and speech therapist work on feeding, but I’m

starting to get discouraged because it doesn’t seem like there’s much progress.

I saw an earlier post about hypothyroidism causing oral aversions, but

his thyroid checked out normal last week. I would appreciate

hearing from anyone who has experience in this area.

Thanks so much!

O’Callaghan

[Guest guest]

Please do. Financially how does that work? Do they take your

insurance? Medicaid? I am assuming you stay with your child 24/7. I am

interested, just have not really looked into it because of the time commitment

and distance.

Romero

Who Dat! Superbowl Bound Baby.

From:

DownSyndromeInfoExchange

[mailto:DownSyndromeInfoExchange ] On Behalf Of

Sent: Friday, January 29, 2010 8:38 AM

To: DownSyndromeInfoExchange

Subject: Re: [DownSyndromeInfoExchange] new to group/feeding issues

Yes, it does require that. I'll be staying there with

my daughter and my husband is getting FMLA so he can stay home with our

sons. It's a big commitment. But, they have a lot of success so we

feel like it would be worth it. I'll let you know how it goes.

~

I am in

Louisiana. I have considered that program, I think it would

require actually moving there and staying in house for 6 weeks or

more.

Romero

Who Dat! Superbowl Bound Baby.

From: DownSyndromeInfoExchange

[mailto:DownSyndromeInfoExchange ] On Behalf Of

Sent: Thursday, January 28, 2010 6:00 PM

To: DownSyndromeInfoExchange

Subject: Re: [DownSyndromeInfoExchange] new to group/feeding issues

I'm not sure what state you're in but I'm in TX and in Dallas

they have a behavioral feeding program at Our Children's House at Baylor.

It's supposed to be a really great program with a lot of success. My 2

year old Aimee (who is failure to thrive) is about to enter the program in a

few weeks. They have told me that there is sometimes success with this behavioral

feeding method when kids haven't been successful with traditional

therapy. I wonder if there is a similar program in your area?

~

On Thu, Jan 28, 2010 at 1:32 PM, O'Callaghan

wrote:

Hi,

I’m sorry to

jump in with a new topic- I joined the listserve recently, but haven’t had time

to post!

My two

year old, Tom, is the youngest of our five children and has DS. I

am interested in issues pertaining to DS generally, but right now Tommy’s big

issue is feeding. He needed a g-tube around 1 year because he was

refusing to eat – he had severe oral aversions likely due to problems with

aspiration.

After his heart

repair in November of 2008, we were hoping to help him become strong and

healthy enough to eat. We have made some progress- he accepts small

amounts of pureed foods. However, he can’t handle texture, and won’t put

any food in his mouth himself. He has a hard time drinking from straw,

cup etc, and will only sometimes accept liquids from a medicine

dropper. In general he doesn’t seem much interested in food at all.

We only g-tube-feed him in high chair after oral feeding in hopes he will

make the connection.

At any rate, I

was wondering if anyone on the listserve has experience w/transitioning from

g-tube to oral feeding? Both his OT and speech therapist work on

feeding, but I’m starting to get discouraged because it doesn’t seem like

there’s much progress. I saw an earlier post about hypothyroidism causing

oral aversions, but his thyroid checked out normal last

week. I would appreciate hearing from anyone who has experience

in this area.

Thanks so much!

O’Callaghan

[Guest guest]

In response to about the Our Children's House at Baylor (in Dallas) feeding program . . .

 

They take our insurance which is the only way we can do it.  I do believe it is covered by Medicaid as well.  You admit your child and they have to stay there for the duration of the program (they told us the average is 28-35 days).  For older children they usually have the parents leave for the day and come back after therapy is over (and you spend the evening/night with your child).  For younger children, a parent can stay with the child all day.  My daughter is actually over the age limit but because she is adopted (and we were concerned about attachment issues) they are making an exception and letting me stay with her the whole time.  She'll be gone for 30-60 minute periods for therapy and then come back to hang out with me until the next time. 

 

Feel free to ask any other questions if you have them.

 

~

 

Please do.   Financially how does that work?   Do they take your insurance?  Medicaid?  I am assuming you stay with your child 24/7.   I am interested, just have not really looked into it because of the time commitment and distance.

 

 

[Guest guest]

Thanks Rox, I appreciated hearing all of your different

experiences!   Tommy is such a bright little fellow, I feel like there must be

real issues w/difficulty swallowing, coordinating the whole chewing thing,

etc.,  to keep him from joining in when we’re all at the table.   In everything

else, he loves to imitate his big brothers and sisters.    Anyway, thanks for

your advice!  

From: DownSyndromeInfoExchange

[mailto:DownSyndromeInfoExchange ] On Behalf Of rox

weigel

Sent: Friday, January 29, 2010 8:48 AM

To: DownSyndromeInfoExchange

Subject: Re: [DownSyndromeInfoExchange] new to group/feeding issues

annie has a g-tube - just for liquids but we found by having her at the table

from the time she could sit in the highchair

she was at the meals, she had a plate or bowl in front of her with one or two

bites at first - we did not push just let her do it

she is 8 and half now and out of my 3 special needs kiddos she is the best

eater - still my smallest

we did the same with michael who no longer has a g-tube - he is 6 - em did not

have a tube but had never sat at the table with family till she came here at

almost 6 - did the same with her -

we taught one of our older ones who had a central line to eat - got rid of that

line at about 9 half - by doing the same

our jeff did not start food due to many allergies - till like 4 almost 5 we

always had him sitting with us even though they did not eat just for the being

with us talking -

its very hard not to push - but think of it this way these kids have so little

control over anything in their lives except eating and well toileting and no

matter what those are the 2 things you will lose at every time - guaranteed

personally I would try to relax - make it matter of fact - no pushing

annie can do anything any other kid can do - we just are alot more careful esp

at the lake - we have tape over the g-tube if she is in the water or even think

she might be - even on the boat - taking no chances - and I check the tape

every half hour or so - it a tape much like the nasty tape they use over the

iv's to hold them in place - it works - we used it on our daughter with a

central line though it was our own pool - not the lake - to me that was too

risky -

annie for what ever reason when she drinks thin liquids with cough choke

sputter, she aspirates thin liquids - she still will try - from time to time

but we gave up the whole pushing liquids - she got so sad because she could not

do it and would just weep - we hugged her and said that the cup is in

your drawer if you want to try you need to get it - so far she just leaves it

there - though at the school when they do snacks - her teacher will put like

1/2 inch of water in it and she will pretend to sip it just like the other

kids. teacher says she never drinks it - one time it was empty and they were so

excited - she did not cough etc but then looked at her dress and it was down

the front - annie just smiled at her - the teacher apologized for the dress

getting wet like several times and annie just grinned I said its not a problem

- end of power play if you ask me - it was like well look we taught her to

drink when you could not - still makes me smile - annie is one smart little

girl - that was the end of the pressure at school -

to me if its not life and death - just relax and enjoy and try not to worry

about it - easier said than done some how it gets into our brains that we have

failed and mommies are not supposed to they are supposed to fix all that is

wrong - sometimes we have to just accept it and move on - been there done that

myself countless of times esp when you get kids that someone else has damaged

and your trying hard to make it right -

rox

From: O'Callaghan

To: DownSyndromeInfoExchange

Sent: Fri, January 29, 2010 7:15:02 AM

Subject: RE: [DownSyndromeInfoExchange] new to group/feeding issues

Hi , Thank you for your honest

answer! I guess that at the back of my mind (but I didn’t want to ask!)

was whether it was possible he may be g-tube dependent for years…. Your answer

helped in that I realize that even in the worst case scenario (long term g-tube),

you can still have a good life, and it’s not the end of the world!

Also, it’s nice to know that you, too,

have tried everything, and still have major feeding issues. Sometime I

worry it’s me not trying hard enough, doing enough research, finding right

therapy, etc. I will get really gung-ho for a

while, try to be consistent, use all the right methods, etc., and find we are

no farther ahead than when we started….

Anyway, I’ll keep trying, but try not to

let it dominate our lives!

Thanks again,

From:

DownSyndromeInfoExc hange@yahoogroup s.com

[mailto:DownSyndrom eInfoExchange@ yahoogroups. com] On Behalf Of

Romero

Sent: Thursday, January 28, 2010 4:31 PM

To: DownSyndromeInfoExc hange@yahoogroup s.com

Subject: RE: [DownSyndromeInfoEx change] new to group/feeding issues

Hi and welcome to the list.

I almost hesitated in replying, just

because I am sure I will not be of much encouragement, but maybe.

My son is now 11, got his G Tube shortly after birth. We did much the

same as you do, which is perfect. Every meal food is offered

first. We all eat at the table, together. Meals are a

big deal . While he has made great strides, he is still G tube

dependant at this time. He does eat orally, but never

enough. He is a very picky eater, and it has to be when he

chooses. Some days he eats a lot. Other days, nothing

orally.

It use to be a major issue for me, and looking

back I can see that when I pushed it hard, he pushed back harder.

Now we are more relaxed about it, he does better with eating, and we just

figure some day, in his time, he will finally decide eating is fun, and the

heck with this feeding tube thing.

We have had awesome therapy, and

therapists. We have had crappy ones. We have done talk tools, we

have done so many various feeding therapies. Not one thing in

particular has worked for us. We tried what the docs recommended,

no g tube feedings at all during the day, only oral, and he would get so hungry

he would eventually eat, they were wrong. It was either continue

and risk serious medical complications or give that up. We

quit.

I just want to encourage you to keep

trying, keep it routine, but most of all, relax about it. I would

stress myself out so badly about it, it was not funny. All for

nothing. My ped told me one day just in casual conversation (we are

also good friends) that he was way more worried about me than .

That I almost seemed to take it personal that he was not eating orally, and he

was right. He was very right. Once I wrapped my head

around all that, things got better. But at 11 he is still g tube

dependant.

Good luck, and try to remember, it is

just a way to get nourishment, it is not a big deal. Hope this was

in some way helpful to you, and not a discouragement, it was not meant to be

that at all.

Romero

Who Dat! Superbowl Bound

Baby.

From:

DownSyndromeInfoExc hange@yahoogroup s.com [mailto:DownSyndrom eInfoExchange@

yahoogroups. com] On Behalf Of O'Callaghan

Sent: Thursday, January 28, 2010 1:32 PM

To: DownSyndromeInfoExc hange@yahoogroup s.com

Subject: [DownSyndromeInfoEx change] new to group/feeding issues

Hi,

I’m sorry to jump in with a new topic- I

joined the listserve recently, but haven’t had time to post!

My two year old, Tom, is the

youngest of our five children and has DS. I am interested in issues

pertaining to DS generally, but right now Tommy’s big issue is feeding.

He needed a g-tube around 1 year because he was refusing to eat – he had severe

oral aversions likely due to problems with aspiration.

After his heart repair in November of

2008, we were hoping to help him become strong and healthy enough to eat.

We have made some progress- he accepts small amounts of pureed foods.

However, he can’t handle texture, and won’t put any food in his mouth

himself. He has a hard time drinking from straw, cup etc, and will only

sometimes accept liquids from a medicine dropper. In general he

doesn’t seem much interested in food at all. We only

g-tube-feed him in high chair after oral feeding in hopes he will make

the connection.

At any rate, I was wondering if anyone

on the listserve has experience w/transitioning from g-tube to oral

feeding? Both his OT and speech therapist work on feeding, but I’m

starting to get discouraged because it doesn’t seem like there’s much

progress. I saw an earlier post about hypothyroidism causing oral

aversions, but his thyroid checked out normal last

week. I would appreciate hearing from anyone who has experience

in this area.

Thanks so much!

O’Callaghan

[Guest guest]

How old is your daughter. My son is adopted as well, but was

adopted as a baby. My son is 11. When are you going? I am interested for

sure. My stomach is in a knot just thinking about it.

Romero

Who Dat! Superbowl Bound Baby.

From: DownSyndromeInfoExchange

[mailto:DownSyndromeInfoExchange ] On Behalf Of

Sent: Friday, January 29, 2010 4:10 PM

To: DownSyndromeInfoExchange

Subject: Re: [DownSyndromeInfoExchange] new to group/feeding issues

In response to about the Our Children's House at

Baylor (in Dallas) feeding program . . .

They take our insurance which is the only way we can do

it. I do believe it is covered by Medicaid as well. You admit your child

and they have to stay there for the duration of the program (they told us the

average is 28-35 days). For older children they usually have the parents

leave for the day and come back after therapy is over (and you spend the

evening/night with your child). For younger children, a parent can stay

with the child all day. My daughter is actually over the age limit but

because she is adopted (and we were concerned about attachment issues) they are

making an exception and letting me stay with her the whole time. She'll

be gone for 30-60 minute periods for therapy and then come back to hang out

with me until the next time.

Feel free to ask any other questions if you have them.

~

Please

do. Financially how does that work? Do they take your

insurance? Medicaid? I am assuming you stay with your child

24/7. I am interested, just have not really looked into it because

of the time commitment and distance.