Re: Feeding problems

[Guest guest]

Missy,

I feel so much for you. Our daughter is 23 years old now and what you are

describing is my daughter years ago. I was beside myself. At that time I

don't know if there were feeding clinics or not but it was never offered to

us. We did have a wise OT who convinced us to quit obsessing on it

ourselves, relax and just feed her the way that was necessary to get food in

her. When we took the heat off and then concentrated on her SI issues more

things improved but I was always convinced that she was going to starve to

death. She didn't, and there are still many foods she won't try at all

(different colored pasta for one even though she loves pasta). We just hung

in there and tried to take off pressure and that helped it for her. She

still has to have things cut very small in order to eat and has a very

active gag reflex, to the point that we can't feed her before she sees the

dentist. Please keep us updated as to what is going on and I do wish there

was something I could offer you besides being willing to hold your hand.

Ruthie

[Guest guest]

As I read this, It just brings so many memories to mind, my little girl is now

15 yrs old, and has always had feeding problems, I have been critizied by many,

who feel they are led to tell what all I'm doing wrong, but,, I would say to

you, one mother to another, LET HER HAVE THE BOTTLE., I Let kaylea keep hers

till she gave it up, around 4and 1/2, to this day her food must be pureed, are

she will gag and then vomit then she will begin to wheez, she can eat

spaghetti'o just as is after heating, kaylea weighs about 75 pounds, but she

eats what she wants, she understands when I talk to her, so for example she

wants something like her main addiction chicken and stars, I will tell her take

3 bites of what ever I may be offering her, it works most of the time, Let me

tell you something that I starting doing that seems to help, three times a day,

I get a serving of the pudding cup, mix it with a packet of carnation breakfast

the one that says 2x proten and calcium, (There is 2

kind) this seems to help her, if you try it, use the vanilla pudding with

vanilla carnation, the choc is too rich, and may make her sick feeling, it does

kayea, Now I have been able to increase hers to 2 packets and 2 pudding cups 3x

a day,she get 1200 calories a day, on top of what ever ealse she eats, she would

never drink a breakfast drink but she will eat the pudding

Missy and Brent Pearsall wrote: Hello, My daughter

will be 4 in June and still will only eat pureed foods. Has any one else

experienced this.

The most chunks she will handle is a stage 3 baby food consistency. I either

have to feed her baby food or puree what we are eating.

She also is still on a bottle. I have tried for 3 years to get her off the

bottle. She will drink other things from a cup or straw with assistance but will

flat out refuse to drink her pediasure from any thing other then her bottle.

I have tried many times to take the bottle away and give her a sippy cup and one

day she laid on the floor and cried for nearly 20 hours straight refusing to

drink from the sippy cup. My heart was breaking and I had to give in and give

her the bottle because she gets dehydrated easily.

The wic office keeps telling me she would have given in but I honestly don't

believe she will.

She is small for her age probably about 24 -25 pounds now.

The GI wants to put a feeding tube in because though she is eating more then

ever she still does not eat enough or enough variety of food and everytime she

gets sick she gets dehydrated.

She has had lots of OT to address her problems with eating which started at

birth (she was a 32 weeker) In the NICU she had an NG tube because she could not

suck,swallow,breathe. She would suck and suck and then drop her heartrate and

have apnea sessions.

She was on a heart monitor for the first 7 months of her life for this reason.

At one point we had her eating spaghetti o's before she turned 2 but then she

got pneumonia and regressed back to stage 2 foods and we finally recently got

her back up to stage 3.

She gets 4 sessions of OT and 4 of speech a week but all her therapists said

they could concentrate on so much more if they did not have to concentrate on

her feeding issues as much.

We were going to have the feeding tube put in last week but then she got sick so

we had to cancel it. Now her speech therapist and OT said she might be ready for

a feeding clinic instead of the Tube.

Does anyone have any experience with feeding clinics?

She will not chew any food ever!!!! But she chews everything else she gets her

hands on.

I try offering her different foods all the time but she either spits them out or

gags sometimes to the point of throwing up.

She also will clench her jaws and refuse to open for anything " safe " after you

try and give her something she does not like.

Also she still will not feed herself. Occasionally I can get her to put her

hand on the spoon but then she makes her self real limp so I still have to guide

the spoon to her.

She gets so sidetracked when she eats I can never get her to pay attention so

meal times take forever.

I am exhausted from trying to get her past these feeding issues. Her brother is

only 10 months and already is eating table foods well.

Any advice would be appreciated.

Thanks

Missy

[Guest guest]

Missy, I've had similar issues on the opposite, Allie will only eat

finger foods and nothing soft. Here's my take:

First, it's not a matter of will, you holding out long enough, or

*anything* to do with *you*. It's that she can't tolerate it and until

she gets just the right therapy protocol/treatments, she won't be able

to. Stop beating yourself up, these people don't understand how

serious it is. I tried withholding Allie's staple food that she ate

for 6 mos and *nothing* else, potato chips & fries. After about 3 days

she was sunken in, lethargic, etc, but would still not eat. These are

not issues of a spoiled kid whose mother won't be strong.These are

real, serious issues that are far beyond what grandma thinks a good

lesson will teach.

Second, you cannot change her eating problems by yourself. I spent 2-3

years trying to force feed, withhold, beg, plead, bribe, etc. What I

found is that it only made the problem worse. She began to see

mealtime as torture instead of time with her family to relax and eat.

My feeling is you need to be mom, so stop beating yourself up.

Third, changing eating problems this severe takes years, IMO. Allie is

*slowly* eating a little more, but it's been on her terms. Like with

Allie, we couldn't just expect her to eat a new food. With these kids,

odors can be overwhelming. A chicken nugget to her might smell like a

dead rat to us. I know I couldn't eat a food that smelt that badly.

With these kids, textures can send them through the roof. I can

remember when I was a kid I could *never* eat homemade mashed potatoes

because getting a potato lump would make me vomit, that's what it felt

like to me was vomit. Same with many soups and casserole-type meals. I

was a teen before I could enjoy such textures.

Have you had her tested for metabolic disorders? This is something

we're testing for Allie right now. She gets sick and dehydrated

easily, I've been told (though not until we'd experienced it for

years) that it's indicative of underlying metabolic disorder. If your

daughter does have something like that, then it's possible certain

foods trigger very negative reactions and that could be why she's so

food aversive. Sorta like someone with a lactose intolerance not

wanting anything dairy because it always makes their stomach hurt.

Have you tried giving her spoons to play with outside of mealtime? We

found with Allie once she was used to the feel and taste of a fork she

would use it for her foods. I've got a couple of other suggestions of

what's helping Allie, but I'll save for later, I think I've got too

much stuff on this posting as is. We are about to start a feeding

group, but can't say yet how it's gonna go.

BTW, Allie is gonna be 7 in July, she weighs 45 lbs, but is now

starting to grow some after being pretty stagnant for about 3 yrs.

Debi

[Guest guest]

I would also suggest trying little things like slightly enlarging the

bottle nipple, just enough to slightly increase the rate, but not so

much she'd notice it. I'm also a big believer of filling juices with

supplements. www.kirkmanlabs.com has many different supplements with

taste, no taste, etc that you could mix with her food. Like with her

formula, you could probably add like 1/8t of the powdered calcium and

shake really, really well without her noticing -- though it's possible

she would. Their zinc is also essentially tasteless.

HTH,

Debi

[Guest guest]

Hi Missy,

I will say that my problems have not been as extreme

as yours with my one daughter. But she does have

feeding issues. She is almost 3 and she has just

finally began picking up the fork or spoon, but does

not really feed herself with it yet and she won't let

me, because she wants to do it herself. She does not

get many calories and she has been in the hospital 5

times in the last year for dehydration due to refusing

to eat or drink. With her they never talk about a

feeding tube because they think she is heavy enough

(she weighs 30lbs), but she is also very tal and has

heavier bones like my hubby. She weighed 37 lbs at the

beginning of the year and has already lost 7 lbs. With

hers I think a lot of it is due to (I think Crohn's

disease) my husband has that and his eating is often

as miniscule as hers. But we attended a few feeding

clinic classes and have had an OT coming in for a long

time now on a weekly basis and the things that they

have recomended have helped. Not a ton, but enough

that I would think maybe your daughter wouldn't have

to get a feeding tube.

The process is messy and very time consuming, I agree

but to me worth helping her eat more and a bigger

variety. One of the things they had us do, was eat

next to her at the table so that she sees us eating,

but not be hovering over her trying to get her to eat.

They had us try giving her at first one thing on her

plate at a time, because some kids don't like their

food to mix. Then they had us start trying to add

another thing to her plate after a certain time,

whether she ate the original thing or not. They had us

try putting foods that were all the same consistancies

one time, and then all the same colors, such as maybe

mashed Yams? Cooked baby carrots, but still in their

regular shape and then orange jello or something like

that. Then one day trying something that you know they

like, and changing it up a bit. For instance, my

daughter loved tortillas with cheese melted on them.

But one day maybe putting some shredded chicken in

with it, or even just chicken flavoring or something

to change it a little and get her used to variety,

then after a couple days of that, maybe add some bacon

bits or something or whatever. Or if it is peanut

butter and jam then maybe a different jam (raspberry

vs peach) or even Honey or bananas on the sandwich

instead of jelly. Anyhow, they taught us to do this

and then gage which thing worked best with and

then keep with that thing for a while and then move on

to another aspect of feeding.

They also taught us to LET HER PLAY WITH HER FOOD. Now

for me that was hard, especially because it was an

apartment with carpet and I don't want to replace the

carpetting when I move. But we bought a big area rug

for underneath the table and chairs and it is a

Chocolate colored, so I don't worry about the rug. But

it also meant that I had to give her a bath after

every meal (ahhhh, like I had time for that) but we

did it and I must say that that is the best thing that

we did of all the teachings. Because once she was able

to feel and play with the food, she realized that the

texture was ok and not too scarey. Yes she has been

and sometimes still is a disaster, but she went from

eating, maybe 2 different foods, which were a plain

piece of white bread, or mashed potatoes - to now

eating about 30 different things. She is still very

picky, and sometimes wants something and the next day

does not, but she is wayyyyyyyyyy better in just 8

months than she was before we started the feeding

stuff. So I would recomend going with it if you can

and waiting on the feeding tube.

Mostly I would avoid the feeding tube if you can,

because I have a very close friend here in Oregon

who's daughter is on one and I had a foster child with

one and they are challenging in and of themselves and

not fun or comfortable at all for your child. These

children I am speaking of were infants and completely

unable to suck at all, so it was mandetory for them to

get one, but my friends daughter is going through a

feeding training class now that her daughter is 18

months and she is finally learning to swallow and can

now finally eat pudding, and tiny mashed up peices of

bread. So she is improving and they say one day may be

able to have the tube removed.

Anyhow, if you have more questions or anything I would

be happy to try to answer or ask my friend. Hope this

helps, maybe you have already tried these things, but

if not hopefully they can help.

Esther

--- Alpha & Omega Christian School

wrote:

> As I read this, It just brings so many memories to

> mind, my little girl is now 15 yrs old, and has

> always had feeding problems, I have been critizied

> by many, who feel they are led to tell what all I'm

> doing wrong, but,, I would say to you, one mother to

> another, LET HER HAVE THE BOTTLE., I Let kaylea keep

> hers till she gave it up, around 4and 1/2, to this

> day her food must be pureed, are she will gag and

> then vomit then she will begin to wheez, she can

> eat spaghetti'o just as is after heating, kaylea

> weighs about 75 pounds, but she eats what she wants,

> she understands when I talk to her, so for example

> she wants something like her main addiction chicken

> and stars, I will tell her take 3 bites of what ever

> I may be offering her, it works most of the time,

> Let me tell you something that I starting doing that

> seems to help, three times a day, I get a serving of

> the pudding cup, mix it with a packet of carnation

> breakfast the one that says 2x proten and calcium,

> (There is 2

> kind) this seems to help her, if you try it, use

> the vanilla pudding with vanilla carnation, the choc

> is too rich, and may make her sick feeling, it does

> kayea, Now I have been able to increase hers to 2

> packets and 2 pudding cups 3x a day,she get 1200

> calories a day, on top of what ever ealse she eats,

> she would never drink a breakfast drink but she will

> eat the pudding

>

> Missy and Brent Pearsall

> wrote: Hello, My daughter will be 4 in June and

> still will only eat pureed foods. Has any one else

> experienced this.

> The most chunks she will handle is a stage 3 baby

> food consistency. I either have to feed her baby

> food or puree what we are eating.

> She also is still on a bottle. I have tried for 3

> years to get her off the bottle. She will drink

> other things from a cup or straw with assistance but

> will flat out refuse to drink her pediasure from any

> thing other then her bottle.

> I have tried many times to take the bottle away and

> give her a sippy cup and one day she laid on the

> floor and cried for nearly 20 hours straight

> refusing to drink from the sippy cup. My heart was

> breaking and I had to give in and give her the

> bottle because she gets dehydrated easily.

> The wic office keeps telling me she would have given

> in but I honestly don't believe she will.

> She is small for her age probably about 24 -25

> pounds now.

> The GI wants to put a feeding tube in because though

> she is eating more then ever she still does not eat

> enough or enough variety of food and everytime she

> gets sick she gets dehydrated.

> She has had lots of OT to address her problems with

> eating which started at birth (she was a 32 weeker)

> In the NICU she had an NG tube because she could not

> suck,swallow,breathe. She would suck and suck and

> then drop her heartrate and have apnea sessions.

> She was on a heart monitor for the first 7 months of

> her life for this reason.

> At one point we had her eating spaghetti o's before

> she turned 2 but then she got pneumonia and

> regressed back to stage 2 foods and we finally

> recently got her back up to stage 3.

> She gets 4 sessions of OT and 4 of speech a week

> but all her therapists said they could concentrate

> on so much more if they did not have to concentrate

> on her feeding issues as much.

> We were going to have the feeding tube put in last

> week but then she got sick so we had to cancel it.

> Now her speech therapist and OT said she might be

> ready for a feeding clinic instead of the Tube.

> Does anyone have any experience with feeding

> clinics?

> She will not chew any food ever!!!! But she chews

> everything else she gets her hands on.

> I try offering her different foods all the time but

> she either spits them out or gags sometimes to the

> point of throwing up.

> She also will clench her jaws and refuse to open for

> anything " safe " after you try and give her something

> she does not like.

> Also she still will not feed herself. Occasionally

> I can get her to put her hand on the spoon but then

> she makes her self real limp so I still have to

> guide the spoon to her.

> She gets so sidetracked when she eats I can never

> get her to pay attention so meal times take forever.

> I am exhausted from trying to get her past these

> feeding issues. Her brother is only 10 months and

> already is eating table foods well.

> Any advice would be appreciated.

> Thanks

> Missy

>

> [Non-text portions of this message have been

> removed]

>

>

>

> Autism_in_Girls-subscribe

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

> Autism_in_Girls-unsubscribe

>

>

>

>