feeding issues

January 9, 2003

In a message dated 1/9/2003 2:53:48 PM Eastern Standard Time,

gavinsaunt1@... writes:

<< Now, however, it seems it may be

the only way to get him to eat. I don't think he is losing weight,

but he certainly isn't gaining any either. Any suggestions would be

greatly appreciated. >>

Traci,

Liam isn't the greatest eater either. Have you tried Joan Medlen's new book

" The Down Syndrome Nutrition Handbook: A Guide to Promoting Healthy

Lifestyles " ? I'm going to order it soon & hope it has some answers.

At Christmas dinner he would eat none of the food offered, but when he

followed my niece into her refrigerator he found grape tomatoes and decided

that was all he wanted to eat. I think over a week's time he eats a balanced

variety but day to day it's strange.

He eats Calamari, some shrimp, Cheese (American or muenster & grilled cheese

sandwiches), yogurt, Ritz crackers, Peanut butter, french toast, pancakes,

ice cream, most fruits, some veggies if they're raw, french fries, toast,

cereal (Corn chex only), hard boiled eggs, cereal bars, pretzels, cheese

doodles and some cookies. This list changes with his moods. Since most

little kids like to dip foods, I give him yogurt & peanut butter as dips for

pretzels & carrots or celery sticks.

Kathy, Liam's mom(4 1/2)

January 9, 2003

I have been having the same problem with Micah and am doing the same thing.

I give him what we eat but leave it for him to explore. If he eats great, if

not, just before bed I give hime some cereal or yogurt. It has been working

as he has been trying new foods on his own. I sometimes think that even

though our kids have sensory issues, they also have " just let me do it

myselfitis " I have also found that leaving little snacks around the house

for him to try whenever he wants works also. Of course you have to go around

at night and pick everything up, but it has been worth it and he is now more

receptive to trying new foods. I certainly don't want it to become a power

issue, then were talking trouble wuth a capital T and remember typical 2-3

year olds also become picky eaters so we have a double whammy going on. Hope

this helps it is working some for me.

Loree

January 9, 2003

My Breezy was a picky eater. She still has her favorites, like myself most

of which are spicy. I too did the leave a taste plate around in several

places in her room as well as the fridge and living room. They were foods

that would not spoil and I put them out on pretty plates so they looked

appealing. She too liked the dipping aspect, that was anything that was

dipable in Ranch or Picante. She loves salad, carrots, broccoli, olives,

pickles, tortilla chips. For breakfast she prefers bacon and Chicken star or

Chicken noodleo soups, sometimes we sneak in a pancake but the soup will keep

her satisfied until lunch at school. Her lunch is a sandwich with turkey and

mustard on white cut into fourths, any kind of veggie with ranch, crackers or

chips, fruit juice and either an oatmeal cookie or ice cream money. She

loves shrimp and crab meat, really enjoys beef and broccoli stir fry at

Chinese Restaurants, can eat more roast than I can and really likes mashed

potatoes and/or fries. She loves most veggies, green beans, peas, carrots,

broccoli, cauliflower, beans. Her all time favorite is Mexican food though.

She loves Tacqitos, Cheese Enchiladas, Tacos, Fajitas. I guess what it comes

down to is that she has been allowed to discover new foods and try them at

her own speed. Buffet restaurants are a great way to see what they will

choose, I always go with Breezy and tell her what each item is and allow her

to try anything that she asks for. It takes the guess work out at home. I

think it has been good for us all, this way I can prepare a variety of foods

for us all. It is such a funny thing, Breezy will even eat Oysters on the

half shell if there is plenty of red sauce, haha. Good luck and God Bless,

GW

January 9, 2003

I'm glad you asked this and looking forward to the responses. I have a

neice (non DS) who will not eat anything but a flat peice of bread (without

crust) with peanut butter on it. She was recently hospitalized for a

" stomach virus " because she kept vomiting. Before that she would eat 1

peice of bread a day. (she is 4) She will now sometimes eat 2 and some

macaronni and cheese and cookie crisp cereal, but that's it. I have told my

brother and sister in law that I think she needs some form of

counseling/help, but to date has not gotten any.

feeding issues

> I was wondering what others have done when your child will not eat.

> Gavin has always been a very picky eater. I can count on my two

> hands, what he will eat. It is mostly snack foods such as crackers.

> Well the last few weeks, he has now eliminated 2 of his " meals " . If

> we don't go out to eat everyday for lunch and dinner to get french

> fries, he will eat nothing but crackers and yogurt all day. At one

> time, he would eat a whole container of yogurt, but will now only eat

> about 6 bites. As for the crackers, it has to be a certain kind. he

> will only eat cheddar crackers which are only made by Krispy. If you

> give him a regular saltine cracker, he will look at it while turning

> it around and then hand it back to you. He knows the difference

> between a regular one and a cheddar one. And as far as the goldfish

> crackers, they have to be whole crackers. If they are broken even a

> little bit, he will not eat them. If Gavin is offered a " new " food,

> he resists and acts as if he is afraid of it. It is becoming quite a

> problem for us, and we are becoming concerned. In the past, his

> therapists have encouraged us to go to a feeding clinic. We did not

> feel it was necessary at the time. Now, however, it seems it may be

> the only way to get him to eat. I don't think he is losing weight,

> but he certainly isn't gaining any either. Any suggestions would be

> greatly appreciated.

>

> Traci and Gavin, 3

>

> What he will eat: goldfish crackers, cheddar saltine crackers, ice

> cream cones, vanilla wafers, icecream, french fries, pizza

> (sometimes), Taco Bell plain beef burrito. He has recently elimated

> Boston Market mashed potatoes (he will eat no other kind, not even

> potatoes from scratch) and spaghetti.

>

> Click reply to all for messages to go to the list. Just hit reply for

messages to go to the sender of the message.

>

January 9, 2003

(just 8 a couple of weeks ago) is also extremely limited. I can

count on ONE hand what he will put in his mouth. I know that it is a sensory

issue - but we have worked on that in past and basically got nowhere. Putting

various flavors and textures in his mouth was like torture. Literally. I friend

of mine whose son has DS finally only offered what the family was eating. The

child did not eat for 9 days. Then he gave in and now eats normally. I was

thinking of doing the same thing this summer. in Dallas

feeding issues

I was wondering what others have done when your child will not eat.

Gavin has always been a very picky eater. I can count on my two

hands, what he will eat. It is mostly snack foods such as crackers.

Well the last few weeks, he has now eliminated 2 of his " meals " . If

we don't go out to eat everyday for lunch and dinner to get french

fries, he will eat nothing but crackers and yogurt all day. At one

time, he would eat a whole container of yogurt, but will now only eat

about 6 bites. As for the crackers, it has to be a certain kind. he

will only eat cheddar crackers which are only made by Krispy. If you

give him a regular saltine cracker, he will look at it while turning

it around and then hand it back to you. He knows the difference

between a regular one and a cheddar one. And as far as the goldfish

crackers, they have to be whole crackers. If they are broken even a

little bit, he will not eat them. If Gavin is offered a " new " food,

he resists and acts as if he is afraid of it. It is becoming quite a

problem for us, and we are becoming concerned. In the past, his

therapists have encouraged us to go to a feeding clinic. We did not

feel it was necessary at the time. Now, however, it seems it may be

the only way to get him to eat. I don't think he is losing weight,

but he certainly isn't gaining any either. Any suggestions would be

greatly appreciated.

Traci and Gavin, 3

What he will eat: goldfish crackers, cheddar saltine crackers, ice

cream cones, vanilla wafers, icecream, french fries, pizza

(sometimes), Taco Bell plain beef burrito. He has recently elimated

Boston Market mashed potatoes (he will eat no other kind, not even

potatoes from scratch) and spaghetti.

Click reply to all for messages to go to the list. Just hit reply for

messages to go to the sender of the message.

January 9, 2003

Ok.... I have been dealing with this for years. Jordan is very similar to Gavin

in that she will readily eat pretzels, popcorn, yogurt and her cans of

Pediasure. Jordan loves spaghetti and willingly eats it if I use the right kind

of sauce.

What I have done in the past to remedy this situation is to physically feed her

myself. I know, it's not the best thing for her because it teaches her to

become dependent on me and she won't eat on her own if she knows that eventually

I'll spoon feed her.

Don't worry, children will never let themselves starve. They might not eat much

but when they get hungry, they will eat. I have a few other suggestions:

1. limit the number of choices you put in front of your child. Giving him/her

one thing at a time helps because as hungry as they might be, it could be that

they can't " decide " what it is they want to eat first.

2. have several smaller meals throughout the day. For instance, if your child

likes cheese, yogurt and applesauce, offer a few slices of cheese with some

crackers and then in a little while offer a cup of yogurt with some pretzels for

them to dip in the yogurt. later you might want to give them some applesauce

and some carrot sticks. Try several small meals every three hours. As long as

they eat something during each meal, it's more than they would have eaten at one

big meal.

3. Find out if your child has a sensory issue within the mouth. If this is the

case, then certain foods will not work with your child as the texture might be

the turn off. Sometimes the food could be too hot, cold or to gritty or too

mushy.

4. Keep a strict food log of everything your child eats and drinks for one week.

Three slices of cheese here, a slice of apple there, document everything and

take it to the doctor. If you are very concerned, ask about having your child

placed on Pediasure. Jordan's been on it for two years and has shown a 12

pound weight gain in those two years. Prior to that, she stayed the same weight

for almost three years.

She really likes the vanilla flavor. They also have chocolate, strawberry,

banana. Jordan gets the Vanilla with Fiber.

While I still struggle with dinner, I have learned that Jordan will eventually

eat. If she doesn't, I just tell her to put her plate on the counter for later.

I wrap it and stick it in the fridge. When she comes to me for pretzels, I pull

out her plate and tell her this is what she gets. I stick with that and I don't

buckle or give in. This way she knows I'm serious and that she needs to eat.

She's not a breakfast person either but she will manage to eat a scrambled egg

if I make the pieces large enough for her to finger feed.

I hope all this advice helps. Eventually your children will eat. For ANY

toddler, this stage is one that they usually give the most resistance to with

feeding. Disabilities or not.

Judi - Proud mother to Jordan 7, ds and Savannah 10 weeks, nda

Where ever you go....

There you are

January 9, 2003

ny is very picky & limited as well. He varies day to day what he will eat.

He could have a favorite food & want it for like weeks & thne suddenly, he won't

touch it. He rarely eats fruit, veggies etc. He'll eat graham crackers, eggs,

hotdogs, cream of wheat as a usual diet. When he feels like it he'll eat

macaroni & meatballs. pizza, french fries, chicken & steak. On occasion he will

eat other foods but not often. I give him 2-3 cans of pediasure a day when he is

very picky. He loves it. The rest of the time he'll drink milk & apple juice.

His milk must be chocolate or strawberry.

My daughter 5 non ds is also as picky. She is about a limited as ny with her

eating.

heather- mom to ny 22 months DS, 5 & Isabella Marie due to arrive

5-28-03

Re: feeding issues

In a message dated 1/9/2003 2:53:48 PM Eastern Standard Time,

gavinsaunt1@... writes:

<< Now, however, it seems it may be

the only way to get him to eat. I don't think he is losing weight,

but he certainly isn't gaining any either. Any suggestions would be

greatly appreciated. >>

Traci,

Liam isn't the greatest eater either. Have you tried Joan Medlen's new book

" The Down Syndrome Nutrition Handbook: A Guide to Promoting Healthy

Lifestyles " ? I'm going to order it soon & hope it has some answers.

At Christmas dinner he would eat none of the food offered, but when he

followed my niece into her refrigerator he found grape tomatoes and decided

that was all he wanted to eat. I think over a week's time he eats a balanced

variety but day to day it's strange.

He eats Calamari, some shrimp, Cheese (American or muenster & grilled cheese

sandwiches), yogurt, Ritz crackers, Peanut butter, french toast, pancakes,

ice cream, most fruits, some veggies if they're raw, french fries, toast,

cereal (Corn chex only), hard boiled eggs, cereal bars, pretzels, cheese

doodles and some cookies. This list changes with his moods. Since most

little kids like to dip foods, I give him yogurt & peanut butter as dips for

pretzels & carrots or celery sticks.

Kathy, Liam's mom(4 1/2)

Click reply to all for messages to go to the list. Just hit reply for

messages to go to the sender of the message.

January 11, 2003

From what I understand from previous posts ( we have all asked this qtn

at some time or another I think) so long as your child eats something

each day, try not to stress too much. Apparently all kids go thru a non

eating stage, and I read in a book called Toddler Taming by Dr

GReen that it will take over 60 days of not eating to starve

yourself. As Judi said earlier- kids rarely starve themselves.

BJ's diet consists of: vegemite sandwiches...(that stuff that ALL

Americans love...NOT hehehehehe)

noodles with chilli....MUST have

chilli....

LOVES youghurt

popcorn

water ice blocks

Ribena (only a new edition- blackcuraant

juice)

sometimes french fries

sometimes chinese food

sometimes avocado

sometimes ham

He will eat well at school where they provide the food- but some days he

eats, some days he wont. I think it is a peer pressure thing.He is also

a typical kid in that if you make noodles 2 or 3 nights in a row. he

doesn't want them.

So BJ always ends up with a vegemite sandwich at dinner, with some of

what we are eating,.only rule is he must try what ever else is on his

plate. The only thing BJ will ever eat of you put it in front t of him

is vegemite and youghurt. He would eat 20 tubs a day if I let him!!

--

Leis....mum to 5 & Natasha 11 months

Parents were invented to make children happy by giving them something to ignore.

Ogden Nash (1902 - 1971)

January 12, 2003

>

> From what I understand from previous posts ( we have all asked

this qtn

> at some time or another I think) so long as your child eats

something

> each day, try not to stress too much. Apparently all kids go thru

a non

> eating stage, and I read in a book called Toddler Taming by Dr

> GReen that it will take over 60 days of not eating to

starve

> yourself.

All this is true, but it is also important to keep in mind that

these phases and stages sometimes occure later in life or last

longer than they do for kids without down syndrome.

It is very important to know if your child is not eating much when

people start complaining about his or her behavior. Being hungry

(but not starving) can contribute to many many behaviors that will

elicit complaints and perhaps initiate the beginning of a " behavior

plan. " Some examples: inability to focus on a project, impuslivity,

aggression, grumpiness, headaches (which lead to aggression and

grumpiness), sleepiness, being unsteady on one's feet (thus

more " stop, drop, and flops " ), oppositional behavior.

So while I agree that the mealtime issues need to be addressed with

a measure of patience and lack of worry, it's important to remember

if reports of " behavior " start coming home. the first thing I ask

when there's an issue with my son is what time it happened and

whether or not he ate his lunch (or weigh in about breakfast).

FWIW,

Joan

January 13, 2003

Kathy,

Liam has a good variety of foods much better the my 8yr. All Liam

is missing is chicken or meat. He enjoyed the pancakes the day of the

Christmas party.

Luckily is a great eater. you put food in front of her and

she'll eat it.

Maureen

January 14, 2003

In a message dated 1/13/2003 7:16:19 PM Eastern Standard Time, Modoyo writes:

<< Luckily is a great eater. you put food in front of her and

she'll eat it.

>>

A girl after my own heart! I wonder if boys have more feeding issues than

girls? My younger brother had big time variety issues too. For months at a

time he would eat nothing but fried eggs, then switched to hot dogs when he

was young. Drove my mother crazy!

Kathy, Liam's mom(4 1/2)

January 14, 2003

My dad is very fond of telling me that I Was a very picky eater when I

was small. I wouldn't eat anything i had to chew like steak etc. I

preferred sausages. My little brother on the other hand, would( and mind

you still does) eat anything in sight, and heaps of it. When my brother

was 1 year old, he weighed 2 stone. ( not sure in metric )

Mind you he is now 30 this year and is 6 foot 4 inches tall and is as

skinny as a rake.......

> I wonder if boys have more feeding issues than

> girls?

--

Leis....mum to 5 & Natasha 11 months

The time you enjoy wasting is not wasted time.

Bertrand (1872 - 1970)

October 14, 2003

In a message dated 10/14/03 9:37:51 AM Central Daylight Time,

writes:

> Did any of your children have any feeding difficulties during

> infancy? I really didn't think Isaac had any. The nurse just left

> and said I should call his pediatrician. Which I did, I am waiting

> for him to call me back. I knew while Isaac ate he was noisy but

> didn't really think anythin of it. She said he was trying really

> hard to suck/swallow. He was really gurgly sounding. He makes some

> high pitch squeaky sounds. When she listened to him his heartbeat

> was really fast from really working to eat. Also, his lung rythms

> were uneven. Did any of you go through this? I will keep you updated

> on what his doctor said. The home nurse wants the doctor to see him

> and hear him when he is feeding.

>

My non-ds child had feeding issues in infancy. He never nursed. Yes, I tried

many lactation consultants.

He was a very messy eater with a bottle and didn't develop a rhythm when

eating ( you know, suck, swallow, suck, swallow in a nice even rhythm).

In our experience it took a speech therapist (sometimes an OT has the

training) who specialized in infant feeding to diagnose him. We went through a

swallow study that showed aspiration and delayed swallow (again with someone

experience in working with infants -a study done with a screaming child is not

reliable). The testing is necessary before treatment begins since some

treatments

can be dangerous (increases aspiration) if the child isn't properly diagnosed.

We used oral exercises to stretch some muscles and to improve his rhythm. We

also thickened his formula or milk to help with the delayed swallow.

It is important to treat feeding issues since a child may not gain weight

well due to aspiration which can cause a low grade chronic infection and it can

build into more difficult feeding issues when other foods are introduced.

Good luck,

Karyn

May 4, 2004

Yes, still eats purees, soft food like yogurt/pudding/ice cream, and a very few solids (french fries, spaghetti, some mashed potatoes and mac/cheese, and Saltine crackers). But when he doesn't want to eat, he won't, which happens sometimes during chemo. Sorry, but what do you mean by soft "mechanical" foods? Thanks!

Beth

[ ] Feeding issues

Hi Beth,

During one of the many hospitalizations for treatment of 's AML, I asked for a speech therapist to see her. I felt like we were back sliding. She was choking on foods she normally didn't have problems with. On two occasions, I had to flip her over and do back blows (part of the CPR sequence). This is when I asked for help because I knew something was different about the way was eating. Anyway, the hospital's speech therapist stated that many children seem to digress and lose oro/motor function during chemo and she wasn't sure why. Prior to starting chemo was able to handle most solids. The speech therapist suggested we revert back to grinding all her food up. I had to specifically request soft mechanical food on her hospital menu. I kept on soft mechanical foods for a few months after she was done and then gradually started to introduce solids again.

sp

> Hi, and thanks so much for setting this up! I'm Beth, and my husband Brad and I have three boys, ages almost 11, 8, and 4. Our 4-year-old, , has DS and was diagnosed with high-risk preB ALL on 10-29-03. He is a rapid early responder and has been in "remission" since day 28. I am right now waiting on his blood counts to see if he can start delayed intensification (DI) tomorrow. Last week, he was hospitalized for insertion of a PEG tube in his stomach. He is malnourished, and this will help us give him all the calories and nutrients he needs. (He weighed 24 pounds when he was hospitalized and had very low protein, albumin and zinc levels.) has always had oral/motor and feeding problems, so chemo just was kind of the last straw nutritionally speaking. Other issues he's faced that may be related to his DS is frequently low ANCs with delays in or reductions in treatment, and a very low tolerance to methotrexate. We live in Indianapolis, Indiana.> > Looking forward to hearing about you all.> > Beth> Beth> mom to , age 4, diagnosed with high-risk preB ALL 10-29-03, on CCG1961-c> www.caringbridge.org/in/kylefacts

May 4, 2004

Soft mechanical foods would be foods that are soft to chew (so it doesn't necessarily have to be totally purees). B DeHoff <bdehoff@...> wrote:

Yes, still eats purees, soft food like yogurt/pudding/ice cream, and a very few solids (french fries, spaghetti, some mashed potatoes and mac/cheese, and Saltine crackers). But when he doesn't want to eat, he won't, which happens sometimes during chemo. Sorry, but what do you mean by soft "mechanical" foods? Thanks!

Beth

[ ] Feeding issues

Hi Beth,

During one of the many hospitalizations for treatment of 's AML, I asked for a speech therapist to see her. I felt like we were back sliding. She was choking on foods she normally didn't have problems with. On two occasions, I had to flip her over and do back blows (part of the CPR sequence). This is when I asked for help because I knew something was different about the way was eating. Anyway, the hospital's speech therapist stated that many children seem to digress and lose oro/motor function during chemo and she wasn't sure why. Prior to starting chemo was able to handle most solids. The speech therapist suggested we revert back to grinding all her food up. I had to specifically request soft mechanical food on her hospital menu. I kept on soft mechanical foods for a few months after she was done and then gradually started to introduce solids again.

sp

> Hi, and thanks so much for setting this up! I'm Beth, and my husband Brad and I have three boys, ages almost 11, 8, and 4. Our 4-year-old, , has DS and was diagnosed with high-risk preB ALL on 10-29-03. He is a rapid early responder and has been in "remission" since day 28. I am right now waiting on his blood counts to see if he can start delayed intensification (DI) tomorrow. Last week, he was hospitalized for insertion of a PEG tube in his stomach. He is malnourished, and this will help us give him all the calories and nutrients he needs. (He weighed 24 pounds when he was hospitalized and had very low protein, albumin and zinc levels.) has always had oral/motor and feeding problems, so chemo just was kind of the last straw nutritionally speaking. Other

issues he's faced that may be related to his DS is frequently low ANCs with delays in or reductions in treatment, and a very low tolerance to methotrexate. We live in Indianapolis, Indiana.> > Looking forward to hearing about you all.> > Beth> Beth> mom to , age 4, diagnosed with high-risk preB ALL 10-29-03, on CCG1961-c> www.caringbridge.org/in/kylefacts

May 4, 2004

Thanks! Nice to know you've been there and that gradually accepted more solids. I am looking forward to that day!

Beth

[ ] Feeding issues

Hi Beth,

During one of the many hospitalizations for treatment of 's AML, I asked for a speech therapist to see her. I felt like we were back sliding. She was choking on foods she normally didn't have problems with. On two occasions, I had to flip her over and do back blows (part of the CPR sequence). This is when I asked for help because I knew something was different about the way was eating. Anyway, the hospital's speech therapist stated that many children seem to digress and lose oro/motor function during chemo and she wasn't sure why. Prior to starting chemo was able to handle most solids. The speech therapist suggested we revert back to grinding all her food up. I had to specifically request soft mechanical food on her hospital menu. I kept on soft mechanical foods for a few months after she was done and then gradually started to introduce solids again.

sp

> Hi, and thanks so much for setting this up! I'm Beth, and my husband Brad and I have three boys, ages almost 11, 8, and 4. Our 4-year-old, , has DS and was diagnosed with high-risk preB ALL on 10-29-03. He is a rapid early responder and has been in "remission" since day 28. I am right now waiting on his blood counts to see if he can start delayed intensification (DI) tomorrow. Last week, he was hospitalized for insertion of a PEG tube in his stomach. He is malnourished, and this will help us give him all the calories and nutrients he needs. (He weighed 24 pounds when he was hospitalized and had very low protein, albumin and zinc levels.) has always had oral/motor and feeding problems, so chemo just was kind of the last straw nutritionally speaking. Other issues he's faced that may be related to his DS is frequently low ANCs with delays in or reductions in treatment, and a very low tolerance to methotrexate. We live in Indianapolis, Indiana.> > Looking forward to hearing about you all.> > Beth> Beth> mom to , age 4, diagnosed with high-risk preB ALL 10-29-03, on CCG1961-c> www.caringbridge.org/in/kylefacts

May 4, 2004

is a terrible eater and always has been. He likes the junk and

trying to get a lot of other stuff into him just doesnt work (as I

sit here and watch him eat a Quaker Choco chip granola bar for

breakfast..LOL) He eats alot more than he used to be still not

enough to make me happy. I try to try new things with him and he

refuses to even try it. Ther is no rhyme or reason to what

eats, hard, crunchy, soft, salty, spicy. It seems like there are

alot of kids with DS that get stuck on one or two foods and wont

progress past that. Maybe one day she will surprise you and eat

everything in site :-)

Hugs

> > Hi, and thanks so much for setting this up! I'm Beth,

and my

> husband Brad and I have three boys, ages almost 11, 8, and

4. Our 4-

> year-old, , has DS and was diagnosed with high-risk

preB ALL on

> 10-29-03. He is a rapid early responder and has been

in " remission "

> since day 28. I am right now waiting on his blood counts

to see if

> he can start delayed intensification (DI) tomorrow. Last

week, he

> was hospitalized for insertion of a PEG tube in his

stomach. He is

> malnourished, and this will help us give him all the

calories and

> nutrients he needs. (He weighed 24 pounds when he was

hospitalized

> and had very low protein, albumin and zinc levels.)

has always

> had oral/motor and feeding problems, so chemo just was

kind of the

> last straw nutritionally speaking. Other issues he's faced

that may

> be related to his DS is frequently low ANCs with delays in

or

> reductions in treatment, and a very low tolerance to

methotrexate.

> We live in Indianapolis, Indiana.

> >

> > Looking forward to hearing about you all.

> >

> > Beth

> > mom to , age 4, diagnosed with high-risk preB ALL 10-

29-03, on

> CCG1961-c

> > www.caringbridge.org/in/kylefacts

>

March 10, 2005

In a message dated 3/10/2005 4:04:33 PM Eastern Standard Time,

clbailey71@... writes:

> Hi- I have a question. My son Liam (4 months today! DS) Has a high narrow

> palate. I tried to nurse him in the hospital and it wasn't working. (And we

> were receiving no help or support very poor situation) So I decided to bottle

> feed.

The nurses in the NICU of the hospital where my Liam was born taught me to

hold the bottle with the first three fingers of my hand and place the other two

(ring and pinky) under his chin for support. You can also gently pull on the

bottle till you know he's got a good seal on the nipple.

My son has a high narrow palate too, but it's low muscle tone of the facial

muscles that makes it hard to eat for some infants. The clicking noise you

mention may mean he's having trouble coordinating his sucking with breathing or

swallowing. Can you get access to a speech therapist who has training in

feeding issues?

Kathy, Liam's Mom (6)

March 10, 2005

In a message dated 3/10/2005 4:04:33 PM Eastern Standard Time,

clbailey71@... writes:

> Hi- I have a question. My son Liam (4 months today! DS) Has a high narrow

> palate. I tried to nurse him in the hospital and it wasn't working. (And we

> were receiving no help or support very poor situation) So I decided to bottle

> feed.

The nurses in the NICU of the hospital where my Liam was born taught me to

hold the bottle with the first three fingers of my hand and place the other two

(ring and pinky) under his chin for support. You can also gently pull on the

bottle till you know he's got a good seal on the nipple.

My son has a high narrow palate too, but it's low muscle tone of the facial

muscles that makes it hard to eat for some infants. The clicking noise you

mention may mean he's having trouble coordinating his sucking with breathing or

swallowing. Can you get access to a speech therapist who has training in

feeding issues?

Kathy, Liam's Mom (6)

March 10, 2005

In a message dated 3/10/2005 4:56:48 P.M. Eastern Standard Time,

Mom2lfm@... writes:

Can you get access to a speech therapist who has training in

feeding issues?

Good luck!! I have been trying to get a good one for two years. My ST was

suppose to be doing oral motor therapy with Micah and wasn't doing it. For

three months I have been on her and when she knew I wasn't letting (told her

if she didn't want to do it we could get someone else to come in on one of

her days that would)up she told me she had scheduling conflicts. When I

questioned the agency they told me " well some therapists don't like to do the

oral

motor work. " Oh Well get a different occupation then. ou know when I

started 4 years ago with EI I was so nice. I now understand why mother's of

special needs kids get a rep foir being hard nosede. If you are not, you get

nothing!!! Oh well after venting (can you tell I am upset.??) I will now sign

off and maybe I will be able to sleep tonight lol!! Thanks for listening.

Loree

March 10, 2005

In a message dated 3/10/2005 4:56:48 P.M. Eastern Standard Time,

Mom2lfm@... writes:

Can you get access to a speech therapist who has training in

feeding issues?

Good luck!! I have been trying to get a good one for two years. My ST was

suppose to be doing oral motor therapy with Micah and wasn't doing it. For

three months I have been on her and when she knew I wasn't letting (told her

if she didn't want to do it we could get someone else to come in on one of

her days that would)up she told me she had scheduling conflicts. When I

questioned the agency they told me " well some therapists don't like to do the

oral

motor work. " Oh Well get a different occupation then. ou know when I

started 4 years ago with EI I was so nice. I now understand why mother's of

special needs kids get a rep foir being hard nosede. If you are not, you get

nothing!!! Oh well after venting (can you tell I am upset.??) I will now sign

off and maybe I will be able to sleep tonight lol!! Thanks for listening.

Loree

July 24, 2006

First, even though there are no issues that you have noticed yet I would

consider getting a feeding specialist evaluation/consultation anyway... there

may be some things that as parents we don't notice and some of the feeding

issues are directly related to developing speech so it can't hurt....

but otherwise I would just keep feeding her different items... encouraging her

to try new tastes and textures.... starting with smaller portions and just

telling her to just try it .... just like we do with every other child....

sounds like you have a beautiful little girl... enjoy her,,,,,, they grow up so

fast....

ann

mom to 15yr old son (nda) and 6 yr old daughter (ds)

Feeding Issues

Hi! My name is Karyn and I am fairly new to this group and have

received a lot of great information. I am the mother to a beautiful 15-

month old daughter, Adena, who has Down Syndrome. I have also started

working for our local ECI program for the past 6 months. One of my co-

workers has a family with a 2-year old with Down Syndrome who has

feeding issues. He was eating some Stage 2 foods but now he spits it

out and laughs. They have been doing a lot of oral-motor exercises

with him, but continue to have feeding problems. Fortunately, my

daughter has always been a good eater and I have not had to experience

the feeding problems yet so I thought I would ask some advice from

those of you who have been there! Thanks so much!!!!

July 25, 2006

In a message dated 7/25/2006 5:28:24 P.M. Central Standard Time,