Re: g-tubes

[Guest guest]

Have you tried cold, sweet things? Jello, Pudding, Icecream? If she

doesn't want food on a spoon, how about on a stick? Popsicles, frozen

pudding, go-gurt, etc? Will she suck on ice chips or ice cubes?

There are occupational therapists whose specialty is swallowing. Also

Speech language therapissts with this specialty. IF the person you are

seeing is not a specialist in this area, ask for a referrel to one who is.

After all this time, she may need therapy to learn the swallowing sequence.

This requires someone who is specially trained to teach you by

demonstrating.

IF all the parts are functional, she can be taught over time to accept food.

Be patient but persistant in getting the help she needs.

Good luck.

Sara - Choose to make lemonade, not complain about the lemons.

>

>Reply-To:

>To: < >

>Subject: Re: g-tubes

>Date: Wed, 30 Aug 2006 23:55:13 +0400

>

>My daughter has had a G-tube since 7 months of age (she is now five) She

>can

>eat a cheerio, goldfish,etc. but the problem is I just cant seem to give

>her a spoonful of whatever we eat. Ive been pureeing all her meals. Weve

>also been going to Speech Therapy twice a week for 30min., I know its not

>much but any little bit should help. At the same time I feel like the

>Speech Therapist here really dont know what to do either. My daughter has

>no problems being able to chew something (her jaws and molars are really

>strong) I think she just doesnt know what to do with a spoonful of foods.

>I

>hope this makes sense to you, its kind of hard to explain.

>

>We also have another problem and that is with her drinking. The reason why

>we still have the G-tube is for hydration. My daughter does not have a

>desire to drink at all. I keep a cup around all day with a straw in it and

>give it to her. She will sip through the straw but its a quick sip instead

>of gulping if that makes sense? If i just let her drink like that then she

>would definitely get dehydrated. So there are two really big issues going

>on here and I feel like I dont know what to do about it. If anybody has

>had

>any experience or suggestions please let me know.

>

>Thanks,

>

> Laurie/Verena ()/G's senior photos

> > >

> > >

> > > > Hi, Everyone.....Welcome to the group, Laurie and Verena.

> > >Laurie....where

> > > > do you live? My son is Gareth.....18 y/o with DS/Autism/OCD. We

>live

> > >in

> > >the

> > > > Lancaster area of Pa.

> > > >

> > > > Very PROUD mama here!!! I just put photos of Gareth's senior

>pictures

> > >in

> > > > his file....prom pictures. Can't believe I did it all myself!!!

> > >Gareth

> > >and I

> > > > just got back from getting into his dorm at PSU.....I'm

>bummed!!!

> > > > Take care, Everyone.

> > > > Margaret

> > > >

> > > >

> > > >

> > > >

> > > >

[Guest guest]

, My son Mic had fundo surgery 2 years ago and came out with a g-tube

and then moved to a Mik-key button. I never used either one of them.He drinks

from a bottle and survives on pediasure.He is eating some now his school has

implemented a feeding program he eats only vanila pudding yogurts and some stage

one babyfood nothing with any texture.My dh and I removed the mik-button

ourselves with needle nose pliers.Unfortunately for Mic the hole in his stomach

did not close and leaked for along time and finally they closed it with

stitches.What I am thinking about is my friend has a child with CP alls he eats

is pureed food and he doesnt drink anything we got liquids in him thru his

food.Or a teaspoon, sometimes a medicine dropper we would just add liquids to

what he was eating he ate baby ceral mixed with milk or apple juice and

sometimes just water.It doesnt look like hes getting liquids but he actually is

thru his food.He is now 14 years old and has never been

dehydrated.Still doesnt drink but manages on liquids thru food.I hated the g

tube and the button and Mic my son hated them.Id ask his doc if you couldnt do

it this way.It really doesnt take that much to keep a kid hydrated.Mic cannot

drink from a straw or a cup everything he tries comes right back out.He can lap

water, he does this in the tub and learned it from our pets.I caught him lapping

water out of the dog dish.He used to drink from a straw no more we did this by

taking an empty clean hair dye bottle and put plastic tubbing in it and you can

squeeze water in him thru the bottle.It took some time but after awhile he

started sucking it thru the straw aka plastic tubing.Alot of our kids have

eating issues. I keep Mic on the pediasure for nutirtion he doesnt eat enough to

sustain.My thoughts are keep him healthy because we never know whats coming

next. Id ask his doc.Hope this helps alittle or gives you some ideas.Laurie

[Guest guest]

Sorry I wasnt clear Mic is drinking thru a baby bottle with a nipple now. He was

drinking thru the hair dye bottle with the plastic tubbing. He stopped doing

that but I think I will try again.We have been trying to get the babybottle from

him I just cant find anything he will drink out of Ive tried sippy cups in all

shapes and sizes Im gonna try the hair dye bottle and the plastic tubing again

and see what he will do.Mic will not chew anything but freeze pops we tried

stage 2 babyfood last week and all we got was serious gagging. I think its a

sensory issue because there are no medical problems. Mic was eating tablefood

and drinking from a cup and talking some then it just all slowly stopped. Thats

when we discovered autism.I have pictures of Mic eating spegitti with us and

mashed potatos and chewing I look at them once in awhile because I know he can

do it just cant handle the texture i used to give him graham crackers and he

chewed them.oh those were the days. Mic is 6

now and people give me dirty looks because he is a big kid with a bottle. If

they only knew. Laurie

[Guest guest]

My daughter has had a G-tube since 7 months of age (she is now five) She can

eat a cheerio, goldfish,etc. but the problem is I just cant seem to give

her a spoonful of whatever we eat. Ive been pureeing all her meals. Weve

also been going to Speech Therapy twice a week for 30min., I know its not

much but any little bit should help. At the same time I feel like the

Speech Therapist here really dont know what to do either. My daughter has

no problems being able to chew something (her jaws and molars are really

strong) I think she just doesnt know what to do with a spoonful of foods. I

hope this makes sense to you, its kind of hard to explain.

We also have another problem and that is with her drinking. The reason why

we still have the G-tube is for hydration. My daughter does not have a

desire to drink at all. I keep a cup around all day with a straw in it and

give it to her. She will sip through the straw but its a quick sip instead

of gulping if that makes sense? If i just let her drink like that then she

would definitely get dehydrated. So there are two really big issues going

on here and I feel like I dont know what to do about it. If anybody has had

any experience or suggestions please let me know.

Thanks,

Laurie/Verena ()/G's senior photos

> >

> >

> > > Hi, Everyone.....Welcome to the group, Laurie and Verena.

> >Laurie....where

> > > do you live? My son is Gareth.....18 y/o with DS/Autism/OCD. We live

> >in

> >the

> > > Lancaster area of Pa.

> > >

> > > Very PROUD mama here!!! I just put photos of Gareth's senior pictures

> >in

> > > his file....prom pictures. Can't believe I did it all myself!!!

> >Gareth

> >and I

> > > just got back from getting into his dorm at PSU.....I'm

bummed!!!

> > > Take care, Everyone.

> > > Margaret

> > >

> > >

> > >

> > >

> > >

[Guest guest]

Thanks Sara for responding to my question. My daughter will eat basically

anything on a spoon as long as it is in a puree consistency. My problem is

she cannot handle anything that requires chewing (except if its one thing at

a time like a cheerio). So I cannot just take a spoonful of macaroni or

pasta and give it to her. She had a barium swallow a few months ago and

everything looked fine. I would just like to be able to feed her whatever I

eat and not have to puree it.

Laurie/Verena ()/G's senior photos

> > > >

> > > >

> > > > > Hi, Everyone.....Welcome to the group, Laurie and Verena.

> > > >Laurie....where

> > > > > do you live? My son is Gareth.....18 y/o with DS/Autism/OCD. We

> >live

> > > >in

> > > >the

> > > > > Lancaster area of Pa.

> > > > >

> > > > > Very PROUD mama here!!! I just put photos of Gareth's senior

> >pictures

> > > >in

> > > > > his file....prom pictures. Can't believe I did it all myself!!!

> > > >Gareth

> > > >and I

> > > > > just got back from getting into his dorm at PSU.....I'm

> >bummed!!!

> > > > > Take care, Everyone.

> > > > > Margaret

> > > > >

> > > > >

> > > > >

> > > > >

> > > > >

[Guest guest]

So you give Mic pediasure using the tye bottles? He is able to drink is

that correct? I sometimes feel overwelmed with all this info. but I will

definitely check with our Pediatrician about getting Haylee fluids through

her food. I use Pediasure too since Haylee's diet is so limited. Thanks

for your help, I really do appreciate it very much.

Re: g-tubes

> , My son Mic had fundo surgery 2 years ago and came out with a

g-tube and then moved to a Mik-key button. I never used either one of

them.He drinks from a bottle and survives on pediasure.He is eating some now

his school has implemented a feeding program he eats only vanila pudding

yogurts and some stage one babyfood nothing with any texture.My dh and I

removed the mik-button ourselves with needle nose pliers.Unfortunately for

Mic the hole in his stomach did not close and leaked for along time and

finally they closed it with stitches.What I am thinking about is my friend

has a child with CP alls he eats is pureed food and he doesnt drink anything

we got liquids in him thru his food.Or a teaspoon, sometimes a medicine

dropper we would just add liquids to what he was eating he ate baby ceral

mixed with milk or apple juice and sometimes just water.It doesnt look like

hes getting liquids but he actually is thru his food.He is now 14 years old

and has never been

> dehydrated.Still doesnt drink but manages on liquids thru food.I hated

the g tube and the button and Mic my son hated them.Id ask his doc if you

couldnt do it this way.It really doesnt take that much to keep a kid

hydrated.Mic cannot drink from a straw or a cup everything he tries comes

right back out.He can lap water, he does this in the tub and learned it from

our pets.I caught him lapping water out of the dog dish.He used to drink

from a straw no more we did this by taking an empty clean hair dye bottle

and put plastic tubbing in it and you can squeeze water in him thru the

bottle.It took some time but after awhile he started sucking it thru the

straw aka plastic tubing.Alot of our kids have eating issues. I keep Mic on

the pediasure for nutirtion he doesnt eat enough to sustain.My thoughts are

keep him healthy because we never know whats coming next. Id ask his

doc.Hope this helps alittle or gives you some ideas.Laurie

>

>