school-aged tube fed children?

[Guest guest]

My son is pretty much all tube fed at 8 years old. He can eat but has

little appetite with his -Silver syndrome, and until this year has

been less than the first percentile but now with GH and a feeding tube is

passing the 50th percentile! I'm finally feeling a bit more comfortable

with the thought of working on oral eating, and I'm wondering if any of you

have or have had an older tube-fed child who can share experiences with me.

Most people are over this well before now, and I've gotten so I much

rather he just grow well than be an oral eater - but it would be so nice if

he at least got his lunch orally. He's in a private school where I need to

do the feedings. We love the school and perhaps they could be forced to

feed him, but I'd rather be nice to them since they have been extremely

accomodating to us in so many other ways.

Inga

[Guest guest]

Inga,

Max was tube fed until he was 11 years old. It took a lot to get him

to eat orally, but now he really enjoys it (when he is not sick as he

is now). One thing to try is to try cutting back on the tube

feedings during the day and see if he gets hungry. He may need some

oral stimulation from a speech-language pathologist to help this

along. His mouth is not used to food, so he needs to be

desensitized. The best thing is probably to start with softer foods,

even if you have to use baby food or toddler meals at first. He will

develop a taste for certain things, like Max likes salty things, and

gradually he will come around. He is old enough now that you can

tell him how important that he eat like everyone else and at least

give it a try. And by cutting back safely with the tube feedings, he

will hopefully get hungry.

Are you using Periactin yet? That will help increase his hunger

which you can insist be satisfied with food first and then top it off

with a bolus feed. Have you tried things like pretzels or chips or

fruit or ice cream to whet his appetite? Has he eaten anything by

mouth? If you take baby steps and do a lot of talking, you may be

surprised at how he comes around. Then again, as I said, he may need

the intervention of a therapist to help overcome the sensitivity he

is bound to have.

I hope this helps you somewhat. Would you believe that sometimes we

have to tell Max to stop eating???? Who would have ever thought that

day would come?

Jodi

[Guest guest]

Jodi,

Tim will eat all kinds of things, but generally the amount he takes is

negligible. Part of this is due to being stuffed with his tube feedings -

probably at 150 kcal/kg/day since he's been tube fed with a fundo. But

even on days when he misses a feed or something, he doesn't eat

proportionally more by mouth. And yet he does want to at least try certain

foods on a regular basis (he loves pasta), even though it seems to

generally be a fairly trivial amount. Some is also probably habit.

I suppose I need to work with a therapist. The thought of desensitization

is interesting. He has a hyperactive gag - I remember this acting up when

we tried desensitizing him as an infant. He just gagged on his Dimetapp!

We tried Periactin when we were doing the medicine dropper feedings, but we

had to keep to a strict schedule with those feedings and he was so behind

in weight that it didn't make a difference before we were compelled to feed

him ourselves again. Now with some weight buffer and the possibility of

pumping some at night, it makes things much more flexible for giving it a

chance. I mainly want him to eat orally at school, but I wonder if

Periactin will make him tired or cranky at school. Perhaps if we worked on

it during the summer, the initial side effects will have worn off? He had

been cranky a lot last year from sleep apnea, so I want him to get a better

start with that this year. Perhaps the antihistimine effect would help his

sinuses, though.

Hey, he is currently in the process of getting a referral to a speech

therapist. Is this the same as a speech-language pathologist? Perhaps we

can work on both therapies in the same session... I've been thinking that

his lack of oral experience may be contributing to the unclearness in his

speech that his teacher pointed out.

Thanks!

Inga

At 03:55 AM 6/29/2003 +0000, you wrote:

>Inga,

>

>Max was tube fed until he was 11 years old. It took a lot to get him

>to eat orally, but now he really enjoys it (when he is not sick as he

>is now). One thing to try is to try cutting back on the tube

>feedings during the day and see if he gets hungry. He may need some

>oral stimulation from a speech-language pathologist to help this

>along. His mouth is not used to food, so he needs to be

>desensitized. The best thing is probably to start with softer foods,

>even if you have to use baby food or toddler meals at first. He will

>develop a taste for certain things, like Max likes salty things, and

>gradually he will come around. He is old enough now that you can

>tell him how important that he eat like everyone else and at least

>give it a try. And by cutting back safely with the tube feedings, he

>will hopefully get hungry.

>

>Are you using Periactin yet? That will help increase his hunger

>which you can insist be satisfied with food first and then top it off

>with a bolus feed. Have you tried things like pretzels or chips or

>fruit or ice cream to whet his appetite? Has he eaten anything by

>mouth? If you take baby steps and do a lot of talking, you may be

>surprised at how he comes around. Then again, as I said, he may need

>the intervention of a therapist to help overcome the sensitivity he

>is bound to have.

>

>I hope this helps you somewhat. Would you believe that sometimes we

>have to tell Max to stop eating???? Who would have ever thought that

>day would come?

>

>Jodi

>

>

>

>

>

>

[Guest guest]

Inga,

The two therapists/pathologists are basically the same thing. I just

tend to use the speech-language pathologist term because my mom is

one and my daughter is entering college to be in the same

profession.

It sounds like you are on the right track. I'm sorry if I misread

your post or if I misinterpreted it. As for the Periactin, yes, he

will be initially cranky and tired, but you can build him up to it

and he will get over the effects before school starts. Are you

familiar with the way to start? Half a dose at dinner for a week,

then a full dose, or even 3/4 the full, and then the same in the

mornign after he adjusts to the nighttime. By gradually introducing

it and increasing it, he will get used to it and not have those side

effects.

One more thing - expecting him to eat at lunch at school may be more

of an expectation than you think. We used to try that with Max, but

the other kids ate so quickly in order to get outside and play that

he was left alone in the cafeteria and eventually had to eat by

himself in the nurse's office. It was really sad. Oh, if I had only

known and could have changed things....

Perhaps a more realistic plan would be for him to eat SOMETHING with

the other kids, but give him either a more substantial breakfast by

mouth or a substantial " snack " after school. That way you can be

with him in the privacy of home and the other kids won't be there to

distract or possibly tease him. Third grade was the worst for Max.

The teasing was unbearable and we had to take him out of the public

school. I hope you have more success.

Jodi

[Guest guest]

Inga,

Colin sees a Speech Language Pathologist that specializes in

oral/motor therapy. She focuses his whole 50 minute session on

feeding therapy and it has been extremely helpful for Colin.

Colin (RSS) and Hayden - 12/6/00

> >Inga,

> >

> >Max was tube fed until he was 11 years old. It took a lot to get

him

> >to eat orally, but now he really enjoys it (when he is not sick as

he

> >is now). One thing to try is to try cutting back on the tube

> >feedings during the day and see if he gets hungry. He may need

some

> >oral stimulation from a speech-language pathologist to help this

> >along. His mouth is not used to food, so he needs to be

> >desensitized. The best thing is probably to start with softer

foods,

> >even if you have to use baby food or toddler meals at first. He

will

> >develop a taste for certain things, like Max likes salty things,

and

> >gradually he will come around. He is old enough now that you can

> >tell him how important that he eat like everyone else and at least

> >give it a try. And by cutting back safely with the tube feedings,

he

> >will hopefully get hungry.

> >

> >Are you using Periactin yet? That will help increase his hunger

> >which you can insist be satisfied with food first and then top it

off

> >with a bolus feed. Have you tried things like pretzels or chips

or

> >fruit or ice cream to whet his appetite? Has he eaten anything by

> >mouth? If you take baby steps and do a lot of talking, you may be

> >surprised at how he comes around. Then again, as I said, he may

need

> >the intervention of a therapist to help overcome the sensitivity

he

> >is bound to have.

> >

> >I hope this helps you somewhat. Would you believe that sometimes

we

> >have to tell Max to stop eating???? Who would have ever thought

that

> >day would come?

> >

> >Jodi

> >

> >

> >

> >

> >

> >

[Guest guest]

Thanks!

It's funny - Tim likes the idea of getting school lunches, but then he

often looks for me and wants to go straight to the bathroom to get his tube

feeding while he takes maybe a few bites and gives me the rest so he can go

out to play! The idea of food is nice to him, but the idea of play is so

much better at this point in his life!

He is in a private school, and the kids aren't supposed to tease. Some of

it does happen a little anyway. He gets along much better with the younger

grades and has cherished friendships with them at recess, and even with the

older grades in his homework club. But he had sleep apnea this year and has

worked through a bunch of cranky immaturity. He's very much better now -

with his sleep and maturity, but I noticed that the other kids in his class

don't sit with him any more. I'm hoping that in third grade he'll perhaps

be with more of the kids from the other second grade class and get a fresh

start.

Inga

>

>One more thing - expecting him to eat at lunch at school may be more

>of an expectation than you think. We used to try that with Max, but

>the other kids ate so quickly in order to get outside and play that

>he was left alone in the cafeteria and eventually had to eat by

>himself in the nurse's office. It was really sad. Oh, if I had only

>known and could have changed things....

>

>Perhaps a more realistic plan would be for him to eat SOMETHING with

>the other kids, but give him either a more substantial breakfast by

>mouth or a substantial " snack " after school. That way you can be

>with him in the privacy of home and the other kids won't be there to

>distract or possibly tease him. Third grade was the worst for Max.

>The teasing was unbearable and we had to take him out of the public

>school. I hope you have more success.

>

>Jodi

>

>

>

>

>

>

[Guest guest]

Gee, Tim sounds a lot like Max when he was that age. He enjoyed

playing with younger or older children, liked the idea of eating, but

did not always eat enough, wanted to be outside to play at recess,

etc. I just NEVER realized the extent of the teasing that went on,

mainly in the classroom. That's why we put him in private school.

Jodi

[Guest guest]

Reading a bit late, but check out the new-vis.com website,

recommended to us by several nutritionist who manage a bunch of RSS

kids in Chicago. THey have tons of various articles and info sorted

by category, beginning with introducing oral foods, and even have a

section on how to move a G-tube-fed child to begin to eat orally.

Salem

> My son is pretty much all tube fed at 8 years old. He can eat but

has

> little appetite with his -Silver syndrome, and until this

year has

> been less than the first percentile but now with GH and a feeding

tube is

> passing the 50th percentile! I'm finally feeling a bit more

comfortable

> with the thought of working on oral eating, and I'm wondering if

any of you

> have or have had an older tube-fed child who can share experiences

with me.

> Most people are over this well before now, and I've gotten so I

much

> rather he just grow well than be an oral eater - but it would be so

nice if

> he at least got his lunch orally. He's in a private school where I

need to

> do the feedings. We love the school and perhaps they could be

forced to

> feed him, but I'd rather be nice to them since they have been

extremely

> accomodating to us in so many other ways.

>

> Inga