Re: a question for the list about g-tubes

[Guest guest]

Our experience is that Matty would have starved to death as well. He

stopped eating last December. It wouldn't have been so hard but Matty

was normal until 2 years old and at 3 stopped eating completely.

There are several reasons one being it is too hard to swallow and too

tiring. Also it is a sensary problem as well and he is getting OT in

the hopes that maybe he will at least eat socially again like ice cream,

candy etc . since it is so much a part of our culture. The doctor says

we may have to adjust to his not eating.

You are right on how you see this problem.

[Guest guest]

thanks for confirming a mom's gut feeling

[Guest guest]

thanks for confirming a mom's gut feeling

[Guest guest]

thanks for confirming a mom's gut feeling

[Guest guest]

My daughter has the same problem with lack of apetite, even though so far we

have avoided a g tube. Her OT found some wonderful ideas for increasing

calories (isn't that fair--I'm trying to lose weight and she can't gain!!),

but I have the most difficulty cajoling, coercing, and cornering her into

eating even a few bites. Also, tactile defensiveness and swallowing

problems, and reflux, contribute to what I think is just a generally not fun

experience for her. DEEP breath, heavy sigh........................

ruth

[Guest guest]

Lexi loved Pediasure but developed an intolerance for it. So, then we were

back to " square one " . SAndy, our OT found a whole list of suggestions on the

internet (not sure of the website, but I'll ask). Here are some of our tried

and true tricks:

**mashed avocado in with her bottle--but it has to be really fine

**she does really well with thick liquids, so I make smoothies: ice cream,

whole cream, chocolate or fresh berries, powdered milk, peanut butter, and

sometimes a banana for good measure. Whirl it up in the blender until it's

the thickness of a milkshake and really SMOOTH consistency (she can't

tolerate the lumps). Also, I usually stick her riboflavin and CoQ10 in here.

Works great.

**Milk Plus. This is hher mainstay for calorie intake right now, since she

has so much trouble tolerating food. So, to 5 ounces of whole milk, I add 2

ounces of cream, 2 heaping tablespoons of powdered milk (this is a GREAT

source for sneaking in more calories), 1 tablespoon melted butter (but be

careful, as it starts to clump when the milk gets cold), and then her vitamin

cocktail in the morning and night. This has helped me put almost 3 pounds on

her which is a miracle in and of itself!

**Peanut butter balls: mix creamy peanut butter with powdered milk ( my old

standby) in equal amounts, to form essentially " edible playdoh " . We try this

alot in therapy, but she's none too crazy about it right now.

I'll post more ideas a little later today, but my son is AWOL from the front

yard, and I need to go track him down.......................

ruth

[Guest guest]

Ruth,

What are your secrets for calories? has the defensiveness also.

We have been giving him Pediasure (which he loves), but are looking for

other ways to increase the calories.

[Guest guest]

Ruth, can you mix honey in the peanut butter balls and then roll them in

powdered milk? My kids love them. (If your child is less than one year tho

there are honey guidelines & that might be true for kids with immune system

weaknesses too)

Re: a question for the list about g-tubes

>From: Hilandgang@...

>

>Lexi loved Pediasure but developed an intolerance for it. So, then we were

>back to " square one " . SAndy, our OT found a whole list of suggestions on

the

>internet (not sure of the website, but I'll ask). Here are some of our

tried

>and true tricks:

>**mashed avocado in with her bottle--but it has to be really fine

>**she does really well with thick liquids, so I make smoothies: ice cream,

>whole cream, chocolate or fresh berries, powdered milk, peanut butter, and

>sometimes a banana for good measure. Whirl it up in the blender until it's

>the thickness of a milkshake and really SMOOTH consistency (she can't

>tolerate the lumps). Also, I usually stick her riboflavin and CoQ10 in

here.

> Works great.

>**Milk Plus. This is hher mainstay for calorie intake right now, since she

>has so much trouble tolerating food. So, to 5 ounces of whole milk, I add

2

>ounces of cream, 2 heaping tablespoons of powdered milk (this is a GREAT

>source for sneaking in more calories), 1 tablespoon melted butter (but be

>careful, as it starts to clump when the milk gets cold), and then her

vitamin

>cocktail in the morning and night. This has helped me put almost 3 pounds

on

>her which is a miracle in and of itself!

>**Peanut butter balls: mix creamy peanut butter with powdered milk ( my

old

>standby) in equal amounts, to form essentially " edible playdoh " . We try

this

>alot in therapy, but she's none too crazy about it right now.

>

>I'll post more ideas a little later today, but my son is AWOL from the

front

>yard, and I need to go track him down.......................

>

>ruth

>

>---------------------------

[Guest guest]

Hi ,

Thanks for the idea. We can't do the honey think, since Lexi is only 16

months. Her pediatrician wants her a little bigger and stronger first, but

mmmmmmmmmm, mixing it in with the peanut butter is making ME hungry. If only

I could pass on a few fat cells to Lexi..............

ruth

[Guest guest]

Hi ,

Thanks for the idea. We can't do the honey think, since Lexi is only 16

months. Her pediatrician wants her a little bigger and stronger first, but

mmmmmmmmmm, mixing it in with the peanut butter is making ME hungry. If only

I could pass on a few fat cells to Lexi..............

ruth

[Guest guest]

,

Peanut butter makes me nervous too. Alycia will be 5 next week and I only

recently started offering it to

her but I mix it up with jelly so it isn't so sticky although, it doesn't matter

because she refuses to

eat it every time I offer it to her.

My grandmother (my grandmother raised me) used to blend butter in with the

peanut butter and then spread

jelly fairly thickly on the bread. She also made sure I chewed very well and

took a sip of milk between

each bite. She did this until I was about 12 at which time I stopped eating

peanut butter sandwiches

because I didn't want the calories.

I think it is a good idea to stay away from peanut butter.

I even get nervous about hot dogs and grapes. My pediatrician says these

things are exactly the size of

a child's esophagus. When I serve these, I cut them into quarters length-wise.

Popcorn and peanuts are dangerous too. And marshmallows....my grandfather

watched helplessly as a child

choked to death in a store from a marshmallow.

Lori

nicole nett wrote:

> From: nmnett@... (nicole nett)

>

> Call me a paranoid mom, but isn't peanut butter a choking hazard for

> kids under 3 or 4? I would like to give it to , but I'm afraid it

> will choke him. I have mental pictures of a dog trying to eat peanut

> butter! Let me know. Thanks

> NIcole

>

> ---------------------------

[Guest guest]

,

Peanut butter makes me nervous too. Alycia will be 5 next week and I only

recently started offering it to

her but I mix it up with jelly so it isn't so sticky although, it doesn't matter

because she refuses to

eat it every time I offer it to her.

My grandmother (my grandmother raised me) used to blend butter in with the

peanut butter and then spread

jelly fairly thickly on the bread. She also made sure I chewed very well and

took a sip of milk between

each bite. She did this until I was about 12 at which time I stopped eating

peanut butter sandwiches

because I didn't want the calories.

I think it is a good idea to stay away from peanut butter.

I even get nervous about hot dogs and grapes. My pediatrician says these

things are exactly the size of

a child's esophagus. When I serve these, I cut them into quarters length-wise.

Popcorn and peanuts are dangerous too. And marshmallows....my grandfather

watched helplessly as a child

choked to death in a store from a marshmallow.

Lori

nicole nett wrote:

> From: nmnett@... (nicole nett)

>

> Call me a paranoid mom, but isn't peanut butter a choking hazard for

> kids under 3 or 4? I would like to give it to , but I'm afraid it

> will choke him. I have mental pictures of a dog trying to eat peanut

> butter! Let me know. Thanks

> NIcole

>

> ---------------------------

[Guest guest]

Forget to eat? Yes, I was alone for 4 days and on the 3rd afternoon kept

almost passing out, couldn't figure it out until a friend said what have you

eaten and it hit me-nothing for 3 days with no thought of it!! Since I was

alone I had cleaned the house and gone about doing fun stuff and it really

hadn't crossed my mind. I know that sounds like a crazy person and for those

of you with normal appetites it sounds impossible, but it happened and the

only way I do remember to eat is the clues around me and fixing for the

family or if something presents itself that sounds esp good. I just have no

normal appetite. I think the hypothalamus is the appestat center? and mine

doesn't work right. And no, I do not have an eating disorder from the past

abuse and do not think I need to be skinny or anything. I TRY to remember to

eat properly because I want to be healthy. I try to remember to make sure I

find something nutritious to eat between Ritalin doses. Actually that has

been good for the habit of reminding me when this dose wears off then find

something nutritious to eat-a routine for me. Otherwise, I would forget a

lot more often.

a question for the list about g-tubes

>From: ChrissyGE@...

>

>I was wondering how many people -adults or kids are on g-tubes and if any

of

>you have had trouble getting them to take anything by mouth. The reason

> got his tube was because with out it I am convinced he would have

>starved to death. He never ever seems to get hungry---is this a common

>problem? I was also wondering if once a child is tubed if the desire to

eat

>becomes less strong--or what I really mean does the " will " to eat go away

>when you realize the tube does all the work for you? suffers with

>respirations of 100-130 per minute and this has always caused him great

>difficulty in the suck swallow breath necessary to bottle or breast feed.

He

>fatigues so easily I wonder if eating is just too much trouble for him.

>

>Any suggestions or advice would be greatly appreciated on this one.

>

>

>

>---------------------------

[Guest guest]

>

>Forget to eat? Yes, I was alone for 4 days and on the 3rd afternoon kept

>almost passing out, couldn't figure it out until a friend said what have

you

>eaten and it hit me-nothing for 3 days with no thought of it!!

Have you ever been evaluated for mental illness or depression? I do exactly

what you do and can go weeks without really wanting to eat. Everything

sounds Blah! and I know it's happening only when my husband starts cajoling

me with my favorites and I still don't care about it.

I have had my thyroid mostly removed from problems with it, so I always

attributed it to that - until my psychiatrist suggested it might be

related. When I'm on good medicine and it's working, then I have a typical

appetite, but still forget to eat lunch.

Kathy

[Guest guest]

>

>Forget to eat? Yes, I was alone for 4 days and on the 3rd afternoon kept

>almost passing out, couldn't figure it out until a friend said what have

you

>eaten and it hit me-nothing for 3 days with no thought of it!!

Have you ever been evaluated for mental illness or depression? I do exactly

what you do and can go weeks without really wanting to eat. Everything

sounds Blah! and I know it's happening only when my husband starts cajoling

me with my favorites and I still don't care about it.

I have had my thyroid mostly removed from problems with it, so I always

attributed it to that - until my psychiatrist suggested it might be

related. When I'm on good medicine and it's working, then I have a typical

appetite, but still forget to eat lunch.

Kathy

[Guest guest]

>

>Forget to eat? Yes, I was alone for 4 days and on the 3rd afternoon kept

>almost passing out, couldn't figure it out until a friend said what have

you

>eaten and it hit me-nothing for 3 days with no thought of it!!

Have you ever been evaluated for mental illness or depression? I do exactly

what you do and can go weeks without really wanting to eat. Everything

sounds Blah! and I know it's happening only when my husband starts cajoling

me with my favorites and I still don't care about it.

I have had my thyroid mostly removed from problems with it, so I always

attributed it to that - until my psychiatrist suggested it might be

related. When I'm on good medicine and it's working, then I have a typical

appetite, but still forget to eat lunch.

Kathy

[Guest guest]

Call me a paranoid mom, but isn't peanut butter a choking hazard for

kids under 3 or 4? I would like to give it to , but I'm afraid it

will choke him. I have mental pictures of a dog trying to eat peanut

butter! Let me know. Thanks

NIcole

[Guest guest]

Call me a paranoid mom, but isn't peanut butter a choking hazard for

kids under 3 or 4? I would like to give it to , but I'm afraid it

will choke him. I have mental pictures of a dog trying to eat peanut

butter! Let me know. Thanks

NIcole

[Guest guest]

I would love to hear your OT's ideas for increasing calories!

Could you share them with us?

Please post to the list.

I have been sharing this sort of info on a g-tube list and have been asking

for ways to increase calories. There are many children on this list whose

parents/caregivers are seeking this same info.

Thanks!

Shirley

Ped nurse to Calley

[Guest guest]

, I give it to my 2 and 3/4 year old and he does fine. I let

him " help " spread the peanut butter on the bread in " mico-thin " layer ---he

feels like a big boy and I feel less worried he will choke.

[Guest guest]

, I give it to my 2 and 3/4 year old and he does fine. I let

him " help " spread the peanut butter on the bread in " mico-thin " layer ---he

feels like a big boy and I feel less worried he will choke.

[Guest guest]

Kathy,

When someone else makes something good or we go out to eat or I look thru

recipes (like browsing a magazine) it's fine. I just REALLY FORGET. I don't

seem to have the whatever inside a lot of times that signals the feeling of

hunger! I don't understand it.

Re: a question for the list about g-tubes

>

>

>>

>>Forget to eat? Yes, I was alone for 4 days and on the 3rd afternoon kept

>>almost passing out, couldn't figure it out until a friend said what have

>you

>>eaten and it hit me-nothing for 3 days with no thought of it!!

>

>Have you ever been evaluated for mental illness or depression? I do

exactly

>what you do and can go weeks without really wanting to eat. Everything

>sounds Blah! and I know it's happening only when my husband starts cajoling

>me with my favorites and I still don't care about it.

>

>I have had my thyroid mostly removed from problems with it, so I always

>attributed it to that - until my psychiatrist suggested it might be

>related. When I'm on good medicine and it's working, then I have a

typical

>appetite, but still forget to eat lunch.

>

>Kathy

>

>

>---------------------------

[Guest guest]

Kathy,

When someone else makes something good or we go out to eat or I look thru

recipes (like browsing a magazine) it's fine. I just REALLY FORGET. I don't

seem to have the whatever inside a lot of times that signals the feeling of

hunger! I don't understand it.

Re: a question for the list about g-tubes

>

>

>>

>>Forget to eat? Yes, I was alone for 4 days and on the 3rd afternoon kept

>>almost passing out, couldn't figure it out until a friend said what have

>you

>>eaten and it hit me-nothing for 3 days with no thought of it!!

>

>Have you ever been evaluated for mental illness or depression? I do

exactly

>what you do and can go weeks without really wanting to eat. Everything

>sounds Blah! and I know it's happening only when my husband starts cajoling

>me with my favorites and I still don't care about it.

>

>I have had my thyroid mostly removed from problems with it, so I always

>attributed it to that - until my psychiatrist suggested it might be

>related. When I'm on good medicine and it's working, then I have a

typical

>appetite, but still forget to eat lunch.

>

>Kathy

>

>

>---------------------------