Re: How Common are Feeding and Swallowing Disorders in DS-ASD?

[Guest guest]

Hi ,

Eating has been a big issue with Hannah. She's 9 now. She had a feeding

tube from 4 months until she was 6. Her food preferences were very narrow. Mac

and Cheese, bright orange, normal noodle (don't try those Scooby Doo noodles)

or won't eat the white mac and cheese even tho it's the same shape noodle etc.

I would say until about a year ago her preferences had widened within each

category. Now she will eat any kind of mac and cheese, any kind of hamburger

etc. And within the last 6 months she has tried new things like tonight she ate

some fish! My husband gave it to her bite by bite but by golly that was great!

Also, she wouldn't eat cookies, she does now. But still won't eat candy and

that's ok with me. Hannah is also totally nonverbal. Don't know if this helps

but hey I'm glad you've found this place to ask these types of questions.

Blessings,

a

[Guest guest]

In a message dated 4/11/2006 10:05:42 P.M. Eastern Standard Time,

coll.guedes@... writes:

Hi all,

I'm very interested in hearing from people who have children with dysphagia,

food refusal and feeding disorders. My son is 5 1/2 years old and has never

eaten a cookie, cracker, hot dog, pizza...nothing! No chicken nuggets! No

boloney or pb & j's (unless I puree it).

He's been through a 6 week feeding (day program from 8-4pm) program at

Children's Hospital in Philadelphia and we are gearing up for an 8-12 week

inpatient feeding program at the Kennedy Krieger Institute at s Hopkins.

About 2

months ago he had to get a feeding tube because he had severe constipation

from not drinking enough.

The CHOP program was rough! Based on verbal ABA and started out with prompts

and some restraint. When we started that program, would only eat a

specific brand of yogurt from a specific container/spoon/chair etc. He left

eating 25 new foods, with no refusals, but he was still fed by me and the foods

were all purees.

3 years later we're going to another feeding program, and the s Hopkins

staff says that they doubt that will ever eat solid foods, or feed

himself. But they have hope that he'll learn to drink from an open cup and

learn

to drink enough fluids so that he won't need to rely on the feeding tube as

much.

It's a crazy existence that is very misunderstood by outsiders and even most

OT's and Speech therapists. It's an emotional rollercoaster for the family.

Thanks,

, Mom to 5 1/2

Hi ,

Maddie went to a feeding specialist at CHOP when she was 2 1/2 to 3.

She was failure to thrive and just wouldn't eat or drink. Our

situation certainly was not as severe as yours is, but yes, it was torturous.

I

remember having to chart what actually went into her body in the course of a

day........we had goals of how many tsps. of something we could get her to

eat......NUTS. After we finally started getting food into her again, she

would ONLY eat one thing....first it was yogurt, ALL DAY EVERY DAY, and ONLY

yogurt. That lasted 6 months. Then hot dogs, chopped super fine. And

once it was spaghetti....all that was obviously autism-related. As she

got older, she just started eating other things. She still has a short list

of foods she refuses to touch (crackers, cereals...), but the kid will put

away SUSHI now!!!!!! The bizaar thing is she has pica, so poop, soap,

shampoo and toothpaste are ALWAYS on the edible list....go figure. We've

since

had to curb her eating, because of weight gain, opposite end of our spectrum.

Maddie has also been going to KKI since she was 2. Good luck down

there and keep us posted. Giant HUGS.....I know how hard it is.

Donna

[Guest guest]

Hi , Mic eats very little babyfood or yogurt everything must be pureed. He

survives on Pediasure. Hes been this way since he was 2 years old.I think its

pretty common for asd kids to have some kind of feeding issues. Mic does not

have a swallowing problem its sensory. Laurie

[Guest guest]

add nathan to your list, he started out not latching on for breast feeding and

wouldnt suck on the bottle , we had to use those platex ones, you know iwththe

baggie in them so we could squeeze a little every now and then, at leasthe was

very easy to break of the bottle, lol, he would choke constantly everytime we

tried regular food, could handle baby food just fine, we worked with our

childrens hospital at the center for development and disabilities, and we tried

upping the textures of his food gradually, but he refuses and refuses, spent

years struggling to get him to eat something other than baby food and panut

butter sandwhiches, he continues to be a huge bread freak, dont get that, then

he moved on to red foods like ketchup, tomato soup, chilli, and most fav and

still is today PIZZA, otherwise even still today, he has a select group of food

items he can eat with little to no choking, theyve done swallow evals several

times, they say he has larynpharyngeal

incoordination, in otherwords, he wont chew or rarely chews, even withall the

work weve done, and then when he swallows, due to low muscle tone with the ds

his tongue doesnt go all the way back as ours does when we swallow, and he has

some little pocket in his throat too where food items catch and also help cause

him to gag as he does, he also has GERD which many have on the list, luckily his

over weight was always an issue, all that bread he kept scarfing,lol and he

would eat so a feeding tube wasnt anything weve ever had to do-- and they fuond

the constant eating and drinking had to do withthe gerd, once we found the right

med for that he rarely scarfs food and is a slim tall young man right now. we

havent done anymore food clinics its just not a battle we choose to fight with

anymore, he eats just fine just have to puree many items, which is pretty simple

with all the neato handhled appliances they have today. shawna

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[Guest guest]

Hi ,

Boy you have been through the wringer!!! YOu are

absolutely dong the best that you can. This is really

really hard stuff.

I just wanted to offer support. Feeding and swalloing

disoders per se are not more or less common in

children with autism...they are more common in

children with Down syndrome overall.

Sensory issues are often a part of the culprit.But I

suspect much cannot be attributed neately to any one

thing in cases like yours.

And though I can't share a lot of specifics and I do

not personally live with it, I can tell you that you

are not alone! I meet at lesat one family at every

presentation in a situation similar to yours.

Hang in there.

Joan

(REgistered dietitian, just in case you don't know

that. And, more importantly, Andy's Mom).

--- Coll-Guedes wrote:

> Hi all,

> I'm very interested in hearing from people who have

> children with dysphagia, food refusal and feeding

> disorders. My son is 5 1/2 years old and has never

> eaten a cookie, cracker, hot dog, pizza...nothing!

> No chicken nuggets! No boloney or pb & j's (unless I

> puree it).

> He's been through a 6 week feeding (day program from

> 8-4pm) program at Children's Hospital in

> Philadelphia and we are gearing up for an 8-12 week

> inpatient feeding program at the Kennedy Krieger

> Institute at s Hopkins. About 2 months ago he

> had to get a feeding tube because he had severe

> constipation from not drinking enough.

> The CHOP program was rough! Based on verbal ABA and

> started out with prompts and some restraint. When we

> started that program, would only eat a specific

> brand of yogurt from a specific

> container/spoon/chair etc. He left eating 25 new

> foods, with no refusals, but he was still fed by me

> and the foods were all purees.

> 3 years later we're going to another feeding

> program, and the s Hopkins staff says that they

> doubt that will ever eat solid foods, or feed

> himself. But they have hope that he'll learn to

> drink from an open cup and learn to drink enough

> fluids so that he won't need to rely on the feeding

> tube as much.

> It's a crazy existence that is very misunderstood by

> outsiders and even most OT's and Speech therapists.

> It's an emotional rollercoaster for the family.

> Thanks,

> , Mom to 5 1/2

>

>

>

>

-----------------------------------------------------------

> Coll-Guedes

> www.21Down.org

>

>

>

> [Non-text portions of this message have been

> removed]

>

>

>

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[Guest guest]

Hi Susuan,

hardly eats anything but soy yogurt and stage 3 foods. She's

been this way forever, since she started solids and is now 3. She will

try sometimes, things like fries, chicken and stuff, but it usually

gets spit back out or thrown on the floor. We lost our funding for

Duocal, the calorie supplement we were giving since she also has a

milk allergy. Don't know what to do about that. Medi-Cal won't cover

it. She also has been refusing drinks, she had a squeeze-bottle straw

that we'd squit into her mouth but has taken just SMALL sips from a

cup of pedialyte lately. I know what you're going thru!

[Guest guest]

>

> Hi ,

> Eating has been a big issue with Hannah. She's 9 now. She had a

feeding

> tube from 4 months until she was 6. Her food preferences were very

narrow. Mac

> and Cheese, bright orange, normal noodle (don't try those Scooby

Doo noodles)

> or won't eat the white mac and cheese even tho it's the same shape

noodle etc.

> I would say until about a year ago her preferences had widened

within each

> category. Now she will eat any kind of mac and cheese, any kind of

hamburger

> etc. And within the last 6 months she has tried new things like

tonight she ate

> some fish! My husband gave it to her bite by bite but by golly that

was great!

> Also, she wouldn't eat cookies, she does now. But still won't eat

candy and

> that's ok with me. Hannah is also totally nonverbal. Don't know if

this helps

> but hey I'm glad you've found this place to ask these types of

questions.

> Blessings,

> a

>

Hi susan

Matt ate only 5 things until he went into Middle School and thats

when his teacher told me to stop sending his lunch. Then all of a

suddened he started to eat. vegs just loves then ,certain

meats .loves yogurt but always had.

the picky eatting goes with the Autism. Most of the parents I know

have a hard time getting their child to eat.But they do eat..

Matts 5 things that he ate for yrs were Yogurt, Twinkles,French

Toast,potatoe chips and vanilla pudding..

so don't give up there is hope..

[Guest guest]

LOL

Seth eats 5 things too! LOL Beef-a-roni, yogurt, froot loops, ice ream and

grapes. He drinks V-8 juice most of the time, hence his orange coloring.

LOL I actually had to take in a note to school from his doctor saying that he

was orange in color due to all the Beef-a-roni and V-8 juice. LOL Funny

now, wasn't at the time. LOL

Gail :-)

Hi susan

Matt ate only 5 things until he went into Middle School and thats

when his teacher told me to stop sending his lunch. Then all of a

suddened he started to eat. vegs just loves then ,certain

meats .loves yogurt but always had.

the picky eatting goes with the Autism. Most of the parents I know

have a hard time getting their child to eat.But they do eat..

Matts 5 things that he ate for yrs were Yogurt, Twinkles,French

Toast,potatoe chips and vanilla pudding..

so don't give up there is hope..

[Guest guest]

Have any of you had the opportunity to see Sara Rosenfeld 's tapes?

www.talktools.net I'm on another list where Sara visits from time to time and

she made her tapes available on a round robin lending schedule for all of us.

Man I wish I'd had this info when jamie was a baby, altho sara says not to give

up- she works with all ages of people.

It's Oral Motor Therapy but not the usual mishmash thrown together by OTs (the

ones we have anyway) and she uses the horns and whistles and all that. But the

beginning stages of Oral Motor Therapy (OMT henceforth:-) are a desensitization

of the mouth just like the sensory stuff we do for the rest of the body.

Then she builds up exercizes and repetitions just like you would exercize

the body (well SOME would LOL) in order to work the muscles of the mouth. It

just makes so much sense to me that if J has never eaten solid food she has

never used the low tone muscles she nees for speech and our SLPs have never

really worked on more than the visual and audio sides of speech. This is the

sensory side. It is ALOT of work especially at age 17 but I've learned alot why

J gags at certain points and why she is incapable of making certain speech

sounds...she's got different areas of her mouth that are hypo and hyper

sensitive. I've had to begin really slowly with her as, after all, we are still

learning more sign and I won't be able to sign to her without my fingers but

there is slow progress.

I know you can insist (FWIW) that your SLP at school borrow these tapes

because they are expensive and maybe get an idea if it would help at all. It

really struck a chord with me and it's info I wish all new moms of DS babies

could have. She focuses mostly on DS, alot on feeding issues.

Naturally having access to these high tech hospital feeding programs would

be the best but if not, these might also be of interest to anyone new who hasn't

heard of OMT Sara style.

Just a thought.

Sherry

[Guest guest]

One of my volunteer activities is to help with the newsletter for a

dietetic practice group called, Dietitians in Developmental and

Psychiatric Disorders.

I am currently editing an articles sent in by a specialist in a feedign

disorder clinic in Nebraska. It is rather interesting.

She quotes studies that show that " approximately 33%-80% of children

with developmental delays exhibit feding problems. " And 25% - 35% of

children without disabilites have feeding problems.

So there you go for incidence!

Joan