Re: something wrong?

[Guest guest]

jenny,

everything you just said sounds like my house times 2!!!!!

We have 2 tornado's, two who have problems with eating anything soft or

gooey!! (ie. Jello, fruit, veggies) we have to hide these things in other

foods...We make alot of stews and soups......and they will eat pudding so we

hide fruit in their with the hope they they won't find it all!!!!

they FEED THEMSELVES WITH HANDS ONLY NO SPOONS OR FORKS YET!! And they

refuse to take a sippy or other cup and won't allow a straw anywhere near

their mouthes! HA.

We have had no sounds since birth except for oooooooh's (Aidan) and

aaaahhhh's (Devlin). We have been taking ProEfa for 1 month and have just

upped the dosage and added more GLA (Borage oil or Evening of Prim)....Devlin

has started to say MUMUM though not all the time and usually when he really

wabts something! The pics don't work as they don't care to look at

them....the sign doesn't work as they are too busy watching our mouthes!! I

HEAR YA!!!!!

Aidan has had increased eye contact and has started to join in ....especially

when he hears others laughing...he has started to copy extremely exaggerated

sounds (this is still very limited but it is a start)...Devlin is doing the

same. They are both walking...running actually but Aidan is very off-balance

and sees PT once a week.....

We have been looked at for Autiam/PDD , genetics for a syndrome, and next we

will be seeing Neurology! I have been asked if I took drugs or

drank...NOT...I have been asked if I was hit during my

preg...NOT.......though I was in a car accident 2 months previous to becoming

pregnant with my boys...I was taking prescription Tylenol and robacecet for

neck pain (whiplash) which I stopped taking ASAP .

We have limited understanding and barely any expressive.....

Our boys go to the fridge when thirsty, highchairs when hungry......dont'

acknowledge going to the bathroom yet.....and they hang off you when they

want to play or cuddle!

We too seem to be a mystery!! Prematurity does not account for all the

problems we are having so it seems..

I wish that I could give you advise but we are in the exact same boat so it

seems!!! I just wanted to tell you that we are so very similar! And let you

know that there are people who understand your situation!!!

Please feel free to email me anytime. I would love to stay in contact and

share ideas with you!

Hugs,

,

Mom to Aidan & Devlin, 30 weekers, now 2 years, IUGR, TTTS, Apnea

(resolved), Bradycardia (resolved), ROP (resolved), pulmonary Stenosis,

intrahepatic portal shunt (liver now resolved), delayed in every area (

global delays), speech delays...now looking into apraxia......

But HAPPY, BEAUTIFUL baby boys.....a constant inspiration and source of joy

to their parents.

[Guest guest]

Hi ,

I really liked your note to us all. I understand the anguish when you sit with

these " professionals " and focus on what they can't do--which is allot--and they

look at you like your a horrible parent because they feel the kid is doing

great. " But, no one understands him....?!? "

The food! My son eats 3 foods and I've stopped pushing any other food on him

because it just made things so much worse and food was becoming a scary thing.

I let him eat what he wants now and will have the speech therapist work on the

food with him this summer. This way I am no longer the enemy.

I don't know what to tell you about everything else, my prayers are with you and

though it may be rough now it will get better, hang in there. \

Nina

----- Original Message -----

She still refuses to eat anything solid that is not crunchy...like she will

eat Cheerios, goldfish crackers, dog food if left on the

floor (eeww) etc. but nothing soft and cooked like carrots, potatoes etc.

The thing is about solids is that she will stuff her

mouth and pocket food in her cheek rather than eat most of it. She will eat

pureed food most of the time. She has reflux too

but takes medication. Mealtime is very stressful. It is like she is hungry

but does not want to eat. It is a battle each and every

time to get her to eat. Forget sippy cups or straws...she refuses anything but

her bottle. She has gone all day refusing anything

to drink because I would not give her a bottle so I hate to try the cold

turkey thing again.

We have done oodles of testing and there is no reason for why she is the way

she is which is frustrating. The only thing I would

like to do is a test to make sure there is not a physical reason why she is

not eating well. I don't know. She does not fit into

any category according to her therapists and many doctors.

I guess I was hoping that maybe you can give me some insight on what else to

try to do we have not done. Oh, she still is not

walking but has all the right body mechanics and strength to do so. She

cruises along the walls and furniture but will walk on

her knees not her feet. Did I mention the sensory problems too? Or that she

is like a small tornado going through everything in

the house?

Oh boy, any suggestions on what might be going on or what I can do? This will

probably be a repeat message for some..I am

hoping that my cyberfamily might be able to help.

Thanks,

Mom to , 4 and 20months

[Guest guest]

Dear ,

Oh how sounds just like my Jack now almost 3. He

always was a picky eater, he always overstuffed his

mouth and still does sometime. Jack at 18 months had

problems blowing through his lips, pursing his lips

for a kiss. It always seemed like his muscles were not

doing what he wanted them to do even his tongue. We

did lots of exercises with him; blowing a feather

across a table, small straws, bubbles, whistles and

mirrors. While he can do all the above much better he

still has feeding issues as far as I have to remind

him while he is eating to take small bites, chew and

swallow before the next bite. It is much easier for

him know to do this since he is older and has been

told for so long that as soon as he starts to over

stuff, I just say, " Jack that is too much " and he

takes some out on his own, he will then remember how

to chew each bite and swallow before taking another

bite.

Has early intervention mentioned a feeding and

swallowing class for her. You should ask them and

maybe they know of a program outside of them that you

can sign her up for. Alot of her feeding could be a

sensory thing with not wanting certain textures in her

mouth. Is she gaining weight is that why her

pediatrician is not saying too much about it.

Has she made progress and accomplished the goals that

were previously set for her or are the goals always

the same. THat is an important question to ask

yourself. You sound very frustrated and rightfully so.

I hope I was helpful sorry I could not offer more.

Good luck,

Eileen

--- <fortherookers@...> wrote:

> She still refuses to eat anything solid that is not

> crunchy...like she will eat Cheerios, goldfish

> crackers, dog food if left on the

> floor (eeww) etc. but nothing soft and cooked like

> carrots, potatoes etc. The thing is about solids is

> that she will stuff her

> mouth and pocket food in her cheek rather than eat

> most of it. She will eat pureed food most of the

> time. She has reflux too

> but takes medication. Mealtime is very stressful.

> It is like she is hungry but does not want to eat.

> It is a battle each and every

> time to get her to eat. Forget sippy cups or

> straws...she refuses anything but her bottle. She

> has gone all day refusing anything

> to drink because I would not give her a bottle so I

> hate to try the cold turkey thing again.

>

> We have done oodles of testing and there is no

> reason for why she is the way she is which is

> frustrating. The only thing I would

> like to do is a test to make sure there is not a

> physical reason why she is not eating well. I don't

> know. She does not fit into

> any category according to her therapists and many

> doctors.

>

> I guess I was hoping that maybe you can give me some

> insight on what else to try to do we have not done.

> Oh, she still is not

> walking but has all the right body mechanics and

> strength to do so. She cruises along the walls and

> furniture but will walk on

> her knees not her feet. Did I mention the sensory

> problems too? Or that she is like a small tornado

> going through everything in

> the house?

>

> Oh boy, any suggestions on what might be going on or

> what I can do? This will probably be a repeat

> message for some..I am

> hoping that my cyberfamily might be able to help.

[Guest guest]

,

I just began my road with EI and did my first IFSP meeting. My son is 23 months

old. He has food preferences that EI would like to change but I let them know

up front that meal time is about nutrition not therapy. At what is still a

young age the fact that he likes pureed baby food (except pizza and grilled

cheese sandwiches) is not a big deal. They gave me some ideas about increasing

his acceptance of different textures and I will try some of those things at

snacktime without making mealtime into therapy. My son will eat ALL (even those

nasty meats) types of baby food so his nutritional needs are being met --- which

is after all what food is for.

I know my EI team has their own ideas about what stage certain things should

happen. (when they should give up the bottle, pacifier, thumb, eat without help

etc.) I listen to them and ideas they have but in the end I do what I think is

best. You can only change so many things at a time. How stressful life would

be for a small child (or even an adult) if their whole world changed at once.

How can they be at their best and apply themselves to learning new things

(talking, walking etc) if the security of their world falls apart around them.

I told my EI team that at our 6 month review we can reassess 's eating and

see if more intervention is needed but that right now I want to concentrate on

the most important thing for him -- communication skills.

I wish I could tell you exactly what to do to help your daughter achieve the

things she needs to. I will say that if it was me I would leave the bottle

alone for now and just keep offering tempting drinks with straws. One can only

change so many things at a time, a two or even three year old that still drinks

from a bottle is not that unusual --- at least where I shop, I see big kids

with bottles quite often.

Good luck with everything. Make your EI team spend more time talking about the

progress (no matter how small) she has made. Maybe by examining her progress

and the therapies that got her there some new ideas will come up that can help

in other areas where she is not progressing.

Wish you the best,

>Hi ,

>I really liked your note to us all. I understand the anguish when you sit

with these " professionals " and focus on what they can't do--which is allot--and

they look at you like your a horrible parent because they feel the kid is doing

great. " But, no one understands him....?!? "

>The food! My son eats 3 foods and I've stopped pushing any other food on him

because it just made things so much worse and food was becoming a scary thing.

I let him eat what he wants now and will have the speech therapist work on the

food with him this summer. This way I am no longer the enemy.

>I don't know what to tell you about everything else, my prayers are with you

and though it may be rough now it will get better, hang in there. \

>Nina

[Guest guest]

FYI, I have posted this before to the mom with twin boys. My would not

take a sippy cup either. I tried everything, the

one that worked for him was a Playtex one with a spout that popped up (it is not

spill proof). The spout pushes down for

travel, but beware it even leaks in that position. It was a very slow process,

I gave him water at first in it mainly just for him to

get use to handling it. He just played in the highchair tray with the water.

You might give it a try. We finally graduated to those

great spill proof ones. My hat is off to the inventor of those, raised 2 boys

before that gadget was out!! Hope this helps

Tammy I. in FL mom to 3.11 apraxic, 6, 17 & 21

----- Original Message -----

She still refuses to eat anything solid that is not crunchy...like she will eat

Cheerios, goldfish crackers, dog food if left on the

floor (eeww) etc. but nothing soft and cooked like carrots, potatoes etc. The

thing is about solids is that she will stuff her

mouth and pocket food in her cheek rather than eat most of it. She will eat

pureed food most of the time. She has reflux too

but takes medication. Mealtime is very stressful. It is like she is hungry but

does not want to eat. It is a battle each and every

time to get her to eat. Forget sippy cups or straws...she refuses anything but

her bottle. She has gone all day refusing anything

to drink because I would not give her a bottle so I hate to try the cold turkey

thing again.

[Guest guest]

,

Here is something I pulled from the archives from M. Hope it

helps. denise

Information on Feeding Disorders:

Kennedy Krieger Feeding Disorders Specialists:

Bart Sevin, Ph.D.

Email: sevin@...

http://www.kennedykrieger.org/

S. Gulotta, Ph.D.

E-mail: gulotta@...

http://www.kennedykrieger.org/

Dr. M. Katz, M.D., M.S.B., F.A.A.P.

http://www.kennedykrieger.org/

Kennedy Krieger Institute Pediatric Feeding Disorders Program

http://www.kennedykrieger.org/

Feeding Young Children with Special Needs

http://www.hs.state.az.us/cfhs/ons/defi-e.htm

New Visions:

The Development of oral motor skills

in children receiving non oral feedings

http://www.new-vis.com/ws/p-orlmtr.htm

New Visions:

Why Evaluate and Treat Mild Feeding Delays and Limitations

http://www.new-vis.com/fym/papers/p-feed6.htm

New Visions:

Feeding and Speech Relationships

http://www.new-vis.com/fym/papers/p-feed8.htm

Feeding and Related Medical Issues

http://members.home.net/dinack/feeding.htm

Feeding Disorders Clinic

http://www.chob.edu/Clinical_Services/feeding.html

Book:

The Educator's Guide to Feeding Children with Disabilities CCC-SLP

http://www.brookespublishing.com/store/books/lowman-3750/index.htm

Nutrition and Feeding for Persons with Special Needs: A Practical

Guide and Resource Manual. Nutrition Education and Training

Program, South Dakota Department of Education, Child and Adult

Nutrition Services, 1992. To order contact: Child and Adult Nutrition

Programs; (605) 773-3413.

[Guest guest]

I cannot tell you how much your support and responses have meant to me. It has

been a hard week for me I guess and I am very frustrated. I can feel confident

that my son is taken care of, he has CP and we have learned so much about

that I feel good for where he is right now.

has microcephaly so her head is very small, 44 cm last check. She is

about 21 lbs. She really looks proportional, not skinny and is tall enough to

go to 18mth-2T clothes. I have seen a nutritionist too who says pump up the

calories...but the thing is she hates to eat anything. She is really balking at

pureed food now. She will only drink milk. She will turn away water (or

watered down milk) and she has no interest in any juice..even the cool aid

stuff. I wonder if it is about her burping it back up (with the reflex). She

definitely has sensory issues. We chase her with a nuk brush, wash cloths,

electric toothbrush, and her brushing brush to do on her hands and feet plus

compression. She was a non cuddler before that but hey I would run (really

crawl or knee walk) away too. I may have to try the tip about the platex

non spill cup. You have to laugh about it, the first visit I had with the OT

she was recommending different cups and I pulled out my bin of assorted

cups.....all types of sippy cups ..handles, no handles, spill no spill, soft

tips hard tips, I even have a cup with the nose part cut out (from ). She

just looked at me and said wow.

I am so thankful for those of you who said it does get better. I assume that is

why many of the professionals we deal with have a wait and see attitude. That

is so hard for me. I am afraid to wait and see in case we are missing anything

so I get bent out of shape. Oh thank you so much for listening.

Mom to 4, and 20months

[Guest guest]

Dear ,

You may want to try to give her pediasure. My friend

whose son was a preemie and had problems gaining

weight loved the stuff and gained plenty. He is now 2

1/2 and although still in the lower end of the graph,

he is totally healthy and in eating great now.

Good luck

Eileen

--- <fortherookers@...> wrote:

> I cannot tell you how much your support and

> responses have meant to me. It has been a hard week

> for me I guess and I am very frustrated. I can feel

> confident that my son is taken care of, he has

> CP and we have learned so much about that I feel

> good for where he is right now.

>

> has microcephaly so her head is very small, 44

> cm last check. She is about 21 lbs. She really

> looks proportional, not skinny and is tall enough to

> go to 18mth-2T clothes. I have seen a nutritionist

> too who says pump up the calories...but the thing is

> she hates to eat anything. She is really balking at

> pureed food now. She will only drink milk. She

> will turn away water (or watered down milk) and she

> has no interest in any juice..even the cool aid

> stuff. I wonder if it is about her burping it back

> up (with the reflex). She definitely has sensory

> issues.

[Guest guest]

Hey -

This message struck home with me - not with my 4 1/2 year old who has

apraxia, but with my younger son (2 1/2 years old). also has sensory

issues so I understand about all the sippy cups you have tried. Once we

finally found a sippy cup it has been hard to get him to drink out of a

regular cup. I think it is because of his oral hypotonia and it is hard for

him to figure out what his mouth needs to do. We now do a lot of staws!!!

My younger son has no issues, but at his 2 year check up the dr.'s were

concerned about his weight. He wouldn't eat anything and they said is was

starting to affect his growth. They wanted to do blood tests on him but I

told them no, let me work with him and see what I can find out (it was

obvious they weren't interested in helping...) All he would do is drink

milk. I switched to whole milk because I was so afraid that since he wasn't

eating anything he wasn't getting enough fat...therefore the whole milk

would be good for him. Well, I finally got to a breaking point and was so

scared because he wasn't eating ANYTHING (maybe I could get 1 chicken nugget

in him all day..) that I was willing to try anything. A friend suggested

not giving him any milk for a couple of days to see what happened, give him

juice or sprite, or water, or anything else. It was amazing....

After one day off of milk he started eating. He started eating anything and

everything, he would even wake up in the morning and tell me he was

hungry...He had never done that before!!!! After a couple of days I thought

that maybe one or two glasses of milk would be okay, but as soon as he drank

it he would throw up. He would even get sick if I made his oatmeal with

milk!!! It turns out he is allergic to milk!!! What would happen is he

would be hungry and ask for milk, I would give it to him and then he would

feel sick so he wouldn't want to eat. He was so young he couldn't tell me

what he was feeling.....so instead of eating he would ask for more milk,

which would make him more nauseous. It was a never ending cycle.

Now he is doing perfectly fine - neither of my boys drink milk ( had

bad reflux that went undiagnosed for 3 1/2 years and he " remembers " the

curdled milk that always came up, so it won't touch the stuff now!!) but I

do make sure they get the calcium they need in other areas. They are both

eating good now, for the first time ever!!!

The only problem I have now is since I was always trying to get them to eat

high fat, high calorie things to add weight to them....I have added the

weight onto me!!!!!!

Just wanted to tell you a little of our story...If you decide to take her

off of milk for a couple of days, you can always start back up again if you

don't notice a difference. It might be worth a try...

Carnell

North Carolina

----- Original Message -----

> I cannot tell you how much your support and responses have meant to me.

>It has been a hard week for me I guess and I am very frustrated. I can feel

>confident that my son is taken care of, he has CP and we have learned

>so much about that I feel good for where he is right now.

>

> has microcephaly so her head is very small, 44 cm last check. She

is about 21 lbs. She really looks proportional, not skinny and is tall

enough to go to 18mth-2T clothes. I have seen a nutritionist too who says

pump up the calories...but the thing is she hates to eat anything. She is

really balking at pureed food now. She will only drink milk. She will turn

away water (or watered down milk) and she has no interest in any juice..even

the cool aid stuff. I wonder if it is about her burping it back up (with

the reflex). She definitely has sensory issues. We chase her with a nuk

brush, wash cloths, electric toothbrush, and her brushing brush to do on her

hands and feet plus compression. She was a non cuddler before that but hey

I would run (really crawl or knee walk) away too. I may have to try the

tip about the platex non spill cup. You have to laugh about it, the first

visit I had with the OT she was recommending different cups and I pulled out

my bin of assorted cups.....all types of sippy cups ..handles, no handles,

spill no spill, soft tips hard tips, I even have a cup with the nose part

cut out (from ). She just looked at me and said wow.

>

> I am so thankful for those of you who said it does get better. I assume

that is why many of the professionals we deal with have a wait and see

attitude. That is so hard for me. I am afraid to wait and see in case we

are missing anything so I get bent out of shape. Oh thank you so much for

listening.

>

>

>

> Mom to 4, and 20months

[Guest guest]

Apart from a couple of posts that have been politically themed, which Sheri

instructed me not to accept, all messages have been posted as they have come

in, subject to me getting sleep now and then!! LOL!

If you are down on mail, , it must be something peculiar to you and

your account.

Sue

-- Something wrong?

I usually get 30-40 e-mails a day from this list, I have gotten maybe 20 all

weekend...that's it.

I haven't gotten 4 from my friend she said she sent, so just wondering if it

is my computer.

Western NY