*OT* Feeding issues - 11 month old

[Guest guest]

As most of you know, I have 11 month old, Lilee. Recently we spoke with a local

feeding lasy at W.I.C. She routinely asked us about what Lilee can do, and how

she eats. Now Lilee has given us 3 real scares where she has choked, and I've

had to interviene and physically help her to get it out. When she was born she

had to go to an ENT specialist becasue of the way she sounded when she breathed.

When breathing in, she sounded normal, but when breathing out it sounded like

she had croup or asthma. The ENT said she had 'Laryngomalacia'. This is when the

Larynx (the little flapper thing in your throat) is premature to the rest of the

body, and works a little improperly. But is not life threatening, nor usually

does it cause any other issues, and goes away fully when they are about 2. This

so far has held true, and Lilee's breathing pretty much sounds 85% normal now at

11 months. She said she is going to check into feeding MD specialists, and

contact me later, along with her MD, and Early Intervention. She also mensioned

that she will probably need a feeding study, and Xrays. That she should not be

choking like this. SO NOW I'M PARANOID! I have noticed that when Lilee eats, she

likes to curl her tongue sideways, and push the food in the far side back. Like

where the jaws meet next to the throat whcih puts her in danger for aspiration.

When can cause Pnemonia and the like in itself. She also sucks alot on foods

like its a nipple or something. So I REALLY have to physically watch her when

she eats. She is definatley not one of those babies you can give a french fry to

in the back seat and expect her to be Ok. Has anyone else has feeding issues

like this? What was the outcome?

Christee

[Guest guest]

Christee,

Feeding issues for us FAR outshadowed the minor issues with our precious

daughters feet. We've been through the ringer and back again with her several

times and I can relate to your feelings very well. I have learned that feeding,

while we think it is just an automatic thing, for some kids isn't. And those

who have oral issues like Lilee's breathing often have issues eating. Gee.

Imagine that. Since you use the same receptacle to breathe and eat you'd think

more professionals would get this connection. Anyway I digress. What I'm going

to say here comes from two years of hell and working our way through lots of

specialists who had more interest in their egos than they did in helping us find

a solution that worked for us so keep that in mind. We did eventually find a

group of specialists who are fabulous. And life is much better for us. So that

said...

If it were me, and it has been so I can say this, I'd chill out the WIC woman.

First of all there really isn't a 'feeding study'. There are swallowing studies

and feeding evals. The swallowing study simply checks her food pathway via

x-ray while she eats. Actually it is quite fascinating if you can get over the

'eating radioactive food' thing. LOL They feed her some liquid and progress to

applesauce type foods laced with a substance that gives them the ability to see

what is happening to it in her mouth and throat while she sits next to an x-ray

machine. The tape is then read by a professional but the folks in the room can

usually reassure you regarding aspiration or lack thereof. If it were me, I'd

be sure there was an ST involved in the process meaning IN THE ROOM during the

test. They will be more of a help than anyone else there. It is my

nonprofessional opinion that you'd know if she was aspirating regularly.

Everyone aspirates now and then - especially when they are young. It is the

regular aspiration that is an issue. So don't let her get you all excited.

She's most likely a nutritionist and while they are known to work with feeding

specialists, it is more from a 'if you need soft foods with calories here are

some you can try' standpoint. Our daughter choked constantly until her surgery.

Our WIC person could have cared less. So find the happy medium with her - be

happy she cares. Don't let her get you too riled.

As far as the feeding study goes - generally you meet with a 'team' of

specialists from psych's to ST's and OT's who watch you feed your child and then

tell you everything you are doing wrong. LOL Yeah, so helpful, aren't they?

What is MUCH more helpful for someone who isn't very 'involved' - and thankfully

that sounds like Lilee - is an ST or OT who is trained in feeding issues. She

will work with you and Lilee to help her use the right muscles and such to eat

correctly.

Generally a 'feeding specialist' is a Pediatric GI. Finding a good one is of

utmost priority. Jerks, just as in any specialty, abound. Getting the wrong

one can do more harm than good and cause a much longer road for you to hoe

including increasing any oral sensitivities Lilee may already have. If it were

me, and again, it has been so I feel confident saying, see if your Ped will make

a referral for an ST/OT joint eval or perhaps call the local EI office to see if

they know of a good feeding ST or OT that you can 'help' your Ped refer you to.

That would be the best place to start. IF they see a need they'll help you find

a good GI and then get a full feeding eval. IF there isn't a need you've saved

yourself much in heartache and stress. And as with any specialist or any

medical issues involving your daughter, follow your gut. If they tell you

something is necessary, tell them you'll think about it and let them know. Then

go home and research your heart out. Make an informed decision and be willing

to stand behind it with knowledge that you have done your best.

For us, the choking stopped when we got 's tonsils and adenoids taken out.

Up to that point feeding was so stressful I can't even begin to express to you

the daily pains. No casual approach to eating here. LOL Every meal that

involved oral feeding was a lengthy, difficult thing for us. We became very

good friends with our local EMT's. They came to our house so much in the year

and a half prior to her T & A that they knew us by name, knew our other kids by

name, had all of her specialists downpat and knew what ER to drive her to

without asking us. A few months after her T & A, They heard a baby in our

development died and since they hadn't heard from us in so long they thought it

was . So when they were in the neighborhood again on another call, they

stopped by to offer their condolences and to see if there was anything they

could do. When I opened the door with on my hip the three of them just

stood there with tears in their eyes. When they finally caught on to my look of

bewilderment they explained what they were doing there and how happy they were

to see her smiling, laughing and breathing normally. It was then that I

realized we really had turned a corner. I hadn't watched her every bite for

weeks. Hadn't had to do the heimlich, CPR or clean her g-tube out for weeks

either. I promptly called her GI and made arrangements to take out her g-tube

which they did when she was having her ATTT done in February. Life does get

better. You just have to find the right key. In the meantime, don't start at

the extreme and work your way back. Start at the simple things and work your

way up.

Let me ask a few questions:

Does Lilee have sleep apnea? Can you hear her stop breathing at night? Does

she swallow continuously when you feed her a bottle (or breast)? Does she

'chew'? Does she open her mouth wide or is she defensive to anyone touching her

mouth? What kinds of food does she eat well? What does she have trouble with?

You said she 'sucks on foods'. Explain that more. Does she suck them to soften

them and then chew or does she not process them at all beside sucking? Does she

sleep more than normal for her? Is she lethargic? Is she on the growth curve

or at least following her own growth curve? Is your Ped worried about her as

much as the WIC woman is? Have you been back to the ENT recently? Have they

done a scope?

Okay, I'll stop. As you can see feeding is an issue. I encourage you to sign

up for the feeding list online. If you want are interested let me know and I'll

send you an invite. The folks there have been a lifeline for us. It is nice to

know that we don't 'need' them anymore. Hang in there.

Chris

*OT* Feeding issues - 11 month old

As most of you know, I have 11 month old, Lilee. Recently we spoke with a

local feeding lasy at W.I.C. She routinely asked us about what Lilee can do, and

how she eats. Now Lilee has given us 3 real scares where she has choked, and

I've had to interviene and physically help her to get it out. When she was born

she had to go to an ENT specialist becasue of the way she sounded when she

breathed. When breathing in, she sounded normal, but when breathing out it

sounded like she had croup or asthma. The ENT said she had 'Laryngomalacia'.

This is when the Larynx (the little flapper thing in your throat) is premature

to the rest of the body, and works a little improperly. But is not life

threatening, nor usually does it cause any other issues, and goes away fully

when they are about 2. This so far has held true, and Lilee's breathing pretty

much sounds 85% normal now at 11 months. She said she is going to check into

feeding MD specialists, and contact me later, along with her MD, and Early

Intervention. She also mensioned that she will probably need a feeding study,

and Xrays. That she should not be choking like this. SO NOW I'M PARANOID! I have

noticed that when Lilee eats, she likes to curl her tongue sideways, and push

the food in the far side back. Like where the jaws meet next to the throat whcih

puts her in danger for aspiration. When can cause Pnemonia and the like in

itself. She also sucks alot on foods like its a nipple or something. So I REALLY

have to physically watch her when she eats. She is definatley not one of those

babies you can give a french fry to in the back seat and expect her to be Ok.

Has anyone else has feeding issues like this? What was the outcome?

Christee

[Guest guest]

There are so many things it could be!!! I will give you my background (just

dealing with the throat area) so you know where I am coming from. My son,

, 19 months, was born with laryngomalacia, trachealmalacia (2 spots in his

trachea), subglottic stenosis, a narrowing of the trachea below the vocal cords,

aspiration, and general uneven tone, as well as GERD. So, I have been dealing

with this for awhile. 's breathing is also much better, but seems to be a

little squeaker lately when he is excited, don't know if it is the weather or

what. As long as the subglottis grows proper that should be ok, but it has been

dilated once, and could need to be again.

Ok, the swallow study is a good place to start as it is the easiest thing on

the little ones. She will sit in a little " chair " and eat. You can bring her

favorite cups and food, and I recommend is so she is more comfy. We tested 3

thicknesses of liquid with , so I brought 3 cups. I also brought

applesauce, a cereal bar, and crackers, so different textures. This allows them

to see how Lilee moves the food from mouth through swallow, so they can see if

there is a problem.

It could be that she is having trouble moving her tongue proper, and speech

therapy would take care of that. She could have an immature mouth, which

has. He has trouble with really hard foods or taking bits out of things. We

are working on this in therapy, so speech therapy is definitely an option no

matter what the problem.

If they don't see anything on the swallow study, they may want to do an

endoscopy or brochoscopy where they look at her esophagus or bronchial tubes for

any narrowing. Just like her larynex was floppy, the esophagus could have some

narrowing or floppiness that is causing a feeling like she has a lump in her

throat. They usually but not always use anethesia for this, but it is very

quick and is done by a peds. ENT or GI depending on what they are looking for.

has had both and both doctors have looked at the same time before. When

they looked at both tubes he was gone for about 30 minutes start to finish, so

it is very quick. If this is it, they can chose to leave it alone if it is not

that bad and teach her to work with what she has, or they can dilate it if it

more severe, which is fairly easy to recover from.

So, there are lots of possibilites at this point, and all are curable so try

not to worry. I would say the swallow study is a great place to start because

they will get an x-ray of her entire swallow, and alot of doctors start there.

If you have any questions or just want to talk about things, you can email me.

Really though, I am sure she will be fine. She may just need more time and some

help in figuring things out!!

11/19/04

Christee Dawson wrote:

As most of you know, I have 11 month old, Lilee. Recently we spoke

with a local feeding lasy at W.I.C. She routinely asked us about what Lilee can

do, and how she eats. Now Lilee has given us 3 real scares where she has choked,

and I've had to interviene and physically help her to get it out. When she was

born she had to go to an ENT specialist becasue of the way she sounded when she

breathed. When breathing in, she sounded normal, but when breathing out it

sounded like she had croup or asthma. The ENT said she had 'Laryngomalacia'.

This is when the Larynx (the little flapper thing in your throat) is premature

to the rest of the body, and works a little improperly. But is not life

threatening, nor usually does it cause any other issues, and goes away fully

when they are about 2. This so far has held true, and Lilee's breathing pretty

much sounds 85% normal now at 11 months. She said she is going to check into

feeding MD specialists, and contact me later, along

with her MD, and Early Intervention. She also mensioned that she will probably

need a feeding study, and Xrays. That she should not be choking like this. SO

NOW I'M PARANOID! I have noticed that when Lilee eats, she likes to curl her

tongue sideways, and push the food in the far side back. Like where the jaws

meet next to the throat whcih puts her in danger for aspiration. When can cause

Pnemonia and the like in itself. She also sucks alot on foods like its a nipple

or something. So I REALLY have to physically watch her when she eats. She is

definatley not one of those babies you can give a french fry to in the back seat

and expect her to be Ok. Has anyone else has feeding issues like this? What was

the outcome?

Christee

[Guest guest]

Glad to here you little one has her feeding tube out. will

probably get his out soon, but is still on seizure meds and reflux meds, so we

are not pushing it! LOL!!! His last swallow study was so much improved, so we

are hoping by the end of the year to have it gone! Again, congrats!!

11/19/04

wrote:

Christee,

Feeding issues for us FAR outshadowed the minor issues with our precious

daughters feet. We've been through the ringer and back again with her several

times and I can relate to your feelings very well. I have learned that feeding,

while we think it is just an automatic thing, for some kids isn't. And those who

have oral issues like Lilee's breathing often have issues eating. Gee. Imagine

that. Since you use the same receptacle to breathe and eat you'd think more

professionals would get this connection. Anyway I digress. What I'm going to say

here comes from two years of hell and working our way through lots of

specialists who had more interest in their egos than they did in helping us find

a solution that worked for us so keep that in mind. We did eventually find a

group of specialists who are fabulous. And life is much better for us. So that

said...

If it were me, and it has been so I can say this, I'd chill out the WIC woman.

First of all there really isn't a 'feeding study'. There are swallowing studies

and feeding evals. The swallowing study simply checks her food pathway via x-ray

while she eats. Actually it is quite fascinating if you can get over the 'eating

radioactive food' thing. LOL They feed her some liquid and progress to

applesauce type foods laced with a substance that gives them the ability to see

what is happening to it in her mouth and throat while she sits next to an x-ray

machine. The tape is then read by a professional but the folks in the room can

usually reassure you regarding aspiration or lack thereof. If it were me, I'd be

sure there was an ST involved in the process meaning IN THE ROOM during the

test. They will be more of a help than anyone else there. It is my

nonprofessional opinion that you'd know if she was aspirating regularly.

Everyone aspirates now and then - especially when they are

young. It is the regular aspiration that is an issue. So don't let her get you

all excited. She's most likely a nutritionist and while they are known to work

with feeding specialists, it is more from a 'if you need soft foods with

calories here are some you can try' standpoint. Our daughter choked constantly

until her surgery. Our WIC person could have cared less. So find the happy

medium with her - be happy she cares. Don't let her get you too riled.

As far as the feeding study goes - generally you meet with a 'team' of

specialists from psych's to ST's and OT's who watch you feed your child and then

tell you everything you are doing wrong. LOL Yeah, so helpful, aren't they? What

is MUCH more helpful for someone who isn't very 'involved' - and thankfully that

sounds like Lilee - is an ST or OT who is trained in feeding issues. She will

work with you and Lilee to help her use the right muscles and such to eat

correctly.

Generally a 'feeding specialist' is a Pediatric GI. Finding a good one is of

utmost priority. Jerks, just as in any specialty, abound. Getting the wrong one

can do more harm than good and cause a much longer road for you to hoe including

increasing any oral sensitivities Lilee may already have. If it were me, and

again, it has been so I feel confident saying, see if your Ped will make a

referral for an ST/OT joint eval or perhaps call the local EI office to see if

they know of a good feeding ST or OT that you can 'help' your Ped refer you to.

That would be the best place to start. IF they see a need they'll help you find

a good GI and then get a full feeding eval. IF there isn't a need you've saved

yourself much in heartache and stress. And as with any specialist or any medical

issues involving your daughter, follow your gut. If they tell you something is

necessary, tell them you'll think about it and let them know. Then go home and

research your heart out. Make an informed

decision and be willing to stand behind it with knowledge that you have done

your best.

For us, the choking stopped when we got 's tonsils and adenoids taken out.

Up to that point feeding was so stressful I can't even begin to express to you

the daily pains. No casual approach to eating here. LOL Every meal that involved

oral feeding was a lengthy, difficult thing for us. We became very good friends

with our local EMT's. They came to our house so much in the year and a half

prior to her T & A that they knew us by name, knew our other kids by name, had all

of her specialists downpat and knew what ER to drive her to without asking us. A

few months after her T & A, They heard a baby in our development died and since

they hadn't heard from us in so long they thought it was . So when they

were in the neighborhood again on another call, they stopped by to offer their

condolences and to see if there was anything they could do. When I opened the

door with on my hip the three of them just stood there with tears in their

eyes. When they finally caught on to

my look of bewilderment they explained what they were doing there and how happy

they were to see her smiling, laughing and breathing normally. It was then that

I realized we really had turned a corner. I hadn't watched her every bite for

weeks. Hadn't had to do the heimlich, CPR or clean her g-tube out for weeks

either. I promptly called her GI and made arrangements to take out her g-tube

which they did when she was having her ATTT done in February. Life does get

better. You just have to find the right key. In the meantime, don't start at the

extreme and work your way back. Start at the simple things and work your way up.

Let me ask a few questions:

Does Lilee have sleep apnea? Can you hear her stop breathing at night? Does she

swallow continuously when you feed her a bottle (or breast)? Does she 'chew'?

Does she open her mouth wide or is she defensive to anyone touching her mouth?

What kinds of food does she eat well? What does she have trouble with? You said

she 'sucks on foods'. Explain that more. Does she suck them to soften them and

then chew or does she not process them at all beside sucking? Does she sleep

more than normal for her? Is she lethargic? Is she on the growth curve or at

least following her own growth curve? Is your Ped worried about her as much as

the WIC woman is? Have you been back to the ENT recently? Have they done a

scope?

Okay, I'll stop. As you can see feeding is an issue. I encourage you to sign up

for the feeding list online. If you want are interested let me know and I'll

send you an invite. The folks there have been a lifeline for us. It is nice to

know that we don't 'need' them anymore. Hang in there.

Chris

*OT* Feeding issues - 11 month old

As most of you know, I have 11 month old, Lilee. Recently we spoke with a local

feeding lasy at W.I.C. She routinely asked us about what Lilee can do, and how

she eats. Now Lilee has given us 3 real scares where she has choked, and I've

had to interviene and physically help her to get it out. When she was born she

had to go to an ENT specialist becasue of the way she sounded when she breathed.

When breathing in, she sounded normal, but when breathing out it sounded like

she had croup or asthma. The ENT said she had 'Laryngomalacia'. This is when the

Larynx (the little flapper thing in your throat) is premature to the rest of the

body, and works a little improperly. But is not life threatening, nor usually

does it cause any other issues, and goes away fully when they are about 2. This

so far has held true, and Lilee's breathing pretty much sounds 85% normal now at

11 months. She said she is going to check into feeding MD specialists, and

contact me later, along with her MD,

and Early Intervention. She also mensioned that she will probably need a

feeding study, and Xrays. That she should not be choking like this. SO NOW I'M

PARANOID! I have noticed that when Lilee eats, she likes to curl her tongue

sideways, and push the food in the far side back. Like where the jaws meet next

to the throat whcih puts her in danger for aspiration. When can cause Pnemonia

and the like in itself. She also sucks alot on foods like its a nipple or

something. So I REALLY have to physically watch her when she eats. She is

definatley not one of those babies you can give a french fry to in the back seat

and expect her to be Ok. Has anyone else has feeding issues like this? What was

the outcome?

Christee

[Guest guest]

,

We are finally off ALL meds. Well, we still do culturelle but I'll take that

over our low dose e-mycin for her gastroparesis any day, so we are off all

scripts. We went from keeping track of eight to none in just a few months after

over a year of them. It was weird for awhile but we are thrilled! It's good to

hear is doing so well! Isn't it nice to see them improve and grow?

I've got some supplies still sitting here - need anything?

Chris

*OT* Feeding issues - 11 month old

As most of you know, I have 11 month old, Lilee. Recently we spoke with a

local feeding lasy at W.I.C. She routinely asked us about what Lilee can do, and

how she eats. Now Lilee has given us 3 real scares where she has choked, and

I've had to interviene and physically help her to get it out. When she was born

she had to go to an ENT specialist becasue of the way she sounded when she

breathed. When breathing in, she sounded normal, but when breathing out it

sounded like she had croup or asthma. The ENT said she had 'Laryngomalacia'.

This is when the Larynx (the little flapper thing in your throat) is premature

to the rest of the body, and works a little improperly. But is not life

threatening, nor usually does it cause any other issues, and goes away fully

when they are about 2. This so far has held true, and Lilee's breathing pretty

much sounds 85% normal now at 11 months. She said she is going to check into

feeding MD specialists, and contact me later, along with her MD,

and Early Intervention. She also mensioned that she will probably need a

feeding study, and Xrays. That she should not be choking like this. SO NOW I'M

PARANOID! I have noticed that when Lilee eats, she likes to curl her tongue

sideways, and push the food in the far side back. Like where the jaws meet next

to the throat whcih puts her in danger for aspiration. When can cause Pnemonia

and the like in itself. She also sucks alot on foods like its a nipple or

something. So I REALLY have to physically watch her when she eats. She is

definatley not one of those babies you can give a french fry to in the back seat

and expect her to be Ok. Has anyone else has feeding issues like this? What was

the outcome?

Christee

[Guest guest]

Chris~ It is wonderful to see them grow. is still a way from walking,

but he took 3 steps to the surprise of my PT and myself. I don't really need

anything because he is eating everything by mouth. He does still aspirate on

thin and with seizures they are being a little cautious. Thanks though!

wrote:

,

We are finally off ALL meds. Well, we still do culturelle but I'll take that

over our low dose e-mycin for her gastroparesis any day, so we are off all

scripts. We went from keeping track of eight to none in just a few months after

over a year of them. It was weird for awhile but we are thrilled! It's good to

hear is doing so well! Isn't it nice to see them improve and grow?

I've got some supplies still sitting here - need anything?

Chris

*OT* Feeding issues - 11 month old

As most of you know, I have 11 month old, Lilee. Recently we spoke with a local

feeding lasy at W.I.C. She routinely asked us about what Lilee can do, and how

she eats. Now Lilee has given us 3 real scares where she has choked, and I've

had to interviene and physically help her to get it out. When she was born she

had to go to an ENT specialist becasue of the way she sounded when she breathed.

When breathing in, she sounded normal, but when breathing out it sounded like

she had croup or asthma. The ENT said she had 'Laryngomalacia'. This is when the

Larynx (the little flapper thing in your throat) is premature to the rest of the

body, and works a little improperly. But is not life threatening, nor usually

does it cause any other issues, and goes away fully when they are about 2. This

so far has held true, and Lilee's breathing pretty much sounds 85% normal now at

11 months. She said she is going to check into feeding MD specialists, and

contact me later, along with her MD,

and Early Intervention. She also mensioned that she will probably need a feeding

study, and Xrays. That she should not be choking like this. SO NOW I'M PARANOID!

I have noticed that when Lilee eats, she likes to curl her tongue sideways, and

push the food in the far side back. Like where the jaws meet next to the throat

whcih puts her in danger for aspiration. When can cause Pnemonia and the like in

itself. She also sucks alot on foods like its a nipple or something. So I REALLY

have to physically watch her when she eats. She is definatley not one of those

babies you can give a french fry to in the back seat and expect her to be Ok.

Has anyone else has feeding issues like this? What was the outcome?

Christee

[Guest guest]

My second born, , had choking issues. He would choke easily, and I had to

break cheerios into quarters when he was 9 months old because he choked on the

cheerio halves. He did end up having some developmental delays but got OT, PT

and speech therapy and is just a regular kid now at the age of almost six. He

did outgrow the choking but it took him several years. It became routine for me

to pluck him from the high chair and pound on his back when needed, although it

was scary at first. So the outcome for was very positive. Because of

his issues, I have watched my two kids since then for choking issues and neither

my youngest son nor seems to have any at all. My older daughter did not

have these issues, either.

What sorts of things did Lilee choke on? Maybe she is just not quite ready for

the chunkier foods yet. I hope you don't have to be too worried for long and

can get some answers or resolution to the issues Lilee is having.

Carol

*OT* Feeding issues - 11 month old

As most of you know, I have 11 month old, Lilee. Recently we spoke with a

local feeding lasy at W.I.C. She routinely asked us about what Lilee can do, and

how she eats. Now Lilee has given us 3 real scares where she has choked, and

I've had to interviene and physically help her to get it out. When she was born

she had to go to an ENT specialist becasue of the way she sounded when she

breathed. When breathing in, she sounded normal, but when breathing out it

sounded like she had croup or asthma. The ENT said she had 'Laryngomalacia'.

This is when the Larynx (the little flapper thing in your throat) is premature

to the rest of the body, and works a little improperly. But is not life

threatening, nor usually does it cause any other issues, and goes away fully

when they are about 2. This so far has held true, and Lilee's breathing pretty

much sounds 85% normal now at 11 months. She said she is going to check into

feeding MD specialists, and contact me later, along with her MD, and Early

Intervention. She also mensioned that she will probably need a feeding study,

and Xrays. That she should not be choking like this. SO NOW I'M PARANOID! I have

noticed that when Lilee eats, she likes to curl her tongue sideways, and push

the food in the far side back. Like where the jaws meet next to the throat whcih

puts her in danger for aspiration. When can cause Pnemonia and the like in

itself. She also sucks alot on foods like its a nipple or something. So I REALLY

have to physically watch her when she eats. She is definatley not one of those

babies you can give a french fry to in the back seat and expect her to be Ok.

Has anyone else has feeding issues like this? What was the outcome?

Christee

[Guest guest]

Does Lilee have sleep apnea? Can you hear her stop breathing at night?

>You know, I've wondered this a time or 2 (my husband has it), but I am not for

sure. If she does, I dont think its bad.

Does she swallow continuously when you feed her a bottle (or breast)?

>She does both continuously and suckles with pausing.

Does she 'chew'?

>Kinda. She Pushes it around alot with her tongue. She does this weird tingue

thing. She will curl it, kinda like twisting it sideways. It is odd how she does

this.

Does she open her mouth wide or is she defensive to anyone touching her mouth?

>She will open well when she is real hungry, and likes what you are giving her.

She is what I have called our 'lazy eater'. When breatfeeding, she only latches

on the nipple itself.

What kinds of food does she eat well? What does she have trouble with?

>Pureed and baby food she does Ok with. The stuff she choked on was a frech fry,

and pizza 2X. Anything that is more of a solid. Ie. crackers, cookies, noodles,

etc she has trouble with.

You said she 'sucks on foods'. Explain that more. Does she suck them to soften

them and then chew or does she not process them at all beside sucking?

> She sucks on them, twists her tongue and pushes them around, and then sucks

some more. More than I have seen any other kid do.

Does she sleep more than normal for her? Is she lethargic?

> If anything, she doesnt sleep enough! She sleep for 8-10hrs at night. Then

power naps (20 min) throughout the day. She will occasionally take 1hr nap.

Lately she has been sleeping a little more.

Is she on the growth curve or at least following her own growth curve?

>She is at the 90%

Is your Ped worried about her as much as the WIC woman is?

> I havent brought it up to her Ped.

Have you been back to the ENT recently?

>No, but I called her office, and they called her today. SHe said that this is

'Normal' for kids who have LaryngoMalacia! She said, no big deal unless it

happen all the time. Said she will 'grow out of it' by 18 months old. I DONT

LIKE THIS AWNSER!

Have they done a scope? No

[Guest guest]

I wouldn't worry to much if she handles baby food, and is having trouble with

pieces of food. At 11 months, she is just learning this. It took awhile

to figure things out, but always loved to eat so that helped. He still doesn't

" chew " but manages to eat everything. His ST said he doesn't have the

coordination or strength to chew, but I wonder because he chews my finger so

well! LOL. He does well with hard foods when he has to take a bit, but jerks

away with softer ones, so I don't know if it is a texture thing, or he isn't

sure how to do it. I think it is the latter because he will chew these foods up

when they are torn into pieces. Overall, I would say be evaluated by a ST, they

are usually involved in a swallow study anyway, so they could definitely give

you advice!

11/19/04

Christee Dawson wrote:

Does Lilee have sleep apnea? Can you hear her stop breathing at night?

>You know, I've wondered this a time or 2 (my husband has it), but I am not for

sure. If she does, I dont think its bad.

Does she swallow continuously when you feed her a bottle (or breast)?

>She does both continuously and suckles with pausing.

Does she 'chew'?

>Kinda. She Pushes it around alot with her tongue. She does this weird tingue

thing. She will curl it, kinda like twisting it sideways. It is odd how she does

this.

Does she open her mouth wide or is she defensive to anyone touching her mouth?

>She will open well when she is real hungry, and likes what you are giving her.

She is what I have called our 'lazy eater'. When breatfeeding, she only latches

on the nipple itself.

What kinds of food does she eat well? What does she have trouble with?

>Pureed and baby food she does Ok with. The stuff she choked on was a frech fry,

and pizza 2X. Anything that is more of a solid. Ie. crackers, cookies, noodles,

etc she has trouble with.

You said she 'sucks on foods'. Explain that more. Does she suck them to soften

them and then chew or does she not process them at all beside sucking?

> She sucks on them, twists her tongue and pushes them around, and then sucks

some more. More than I have seen any other kid do.

Does she sleep more than normal for her? Is she lethargic?

> If anything, she doesnt sleep enough! She sleep for 8-10hrs at night. Then

power naps (20 min) throughout the day. She will occasionally take 1hr nap.

Lately she has been sleeping a little more.

Is she on the growth curve or at least following her own growth curve?

>She is at the 90%

Is your Ped worried about her as much as the WIC woman is?

> I havent brought it up to her Ped.

Have you been back to the ENT recently?

>No, but I called her office, and they called her today. SHe said that this is

'Normal' for kids who have LaryngoMalacia! She said, no big deal unless it

happen all the time. Said she will 'grow out of it' by 18 months old. I DONT

LIKE THIS AWNSER!

Have they done a scope? No

[Guest guest]

I'm not Christee, but my dd has feeding issues and we've just begun to

deal with them. She's 15 months and nearly exclusively breastfed, eating maybe

the equivalent of 8-10 cheerios/day. We had the swallow study done and just

finished up with a 24 ph probe yesterday morning. They're checking for reflux to

explain the daily aspiration she seems to have. Her ped. just keeps saying she

has a cold, but her speech therapist noticed she would get more congested after

we would work with pureed food with her. She is also hyper sensitive in her

face/mouth so doesn't like anything to touch her at all. About 2 months ago the

tiniest crumb in her mouth would gag her, now she can eat small bits of soft or

dissolvable food! Yeah! Still have to feed her by hand because she loaths a

spoon and doesn't understand how to pick up food and put it in her mouth

herself. She's also developmentally delayed and has low muscle tone. So many

concerns, but she's doing great, just lots of stuff to work on

Fortunately, she's pretty healthy in spite of all of it. She breastfeeds great!

No issues there. Just one more journey for her/us. Anyway, what's the name of

the feeding issues group? I'm interested!

Thanks,

Marcia

*OT* Feeding issues - 11 month old

As most of you know, I have 11 month old, Lilee. Recently we spoke with a

local feeding lasy at W.I.C. She routinely asked us about what Lilee can do, and

how she eats. Now Lilee has given us 3 real scares where she has choked, and

I've had to interviene and physically help her to get it out. When she was born

she had to go to an ENT specialist becasue of the way she sounded when she

breathed. When breathing in, she sounded normal, but when breathing out it

sounded like she had croup or asthma. The ENT said she had 'Laryngomalacia'.

This is when the Larynx (the little flapper thing in your throat) is premature

to the rest of the body, and works a little improperly. But is not life

threatening, nor usually does it cause any other issues, and goes away fully

when they are about 2. This so far has held true, and Lilee's breathing pretty

much sounds 85% normal now at 11 months. She said she is going to check into

feeding MD specialists, and contact me later, along with her MD, and Early

Intervention. She also mensioned that she will probably need a feeding study,

and Xrays. That she should not be choking like this. SO NOW I'M PARANOID! I have

noticed that when Lilee eats, she likes to curl her tongue sideways, and push

the food in the far side back. Like where the jaws meet next to the throat whcih

puts her in danger for aspiration. When can cause Pnemonia and the like in

itself. She also sucks alot on foods like its a nipple or something. So I REALLY

have to physically watch her when she eats. She is definatley not one of those

babies you can give a french fry to in the back seat and expect her to be Ok.

Has anyone else has feeding issues like this? What was the outcome?

Christee

[Guest guest]

Marcia,

The feeding group, which has been nothing but helpful is

http://health.groups.yahoo.com/group/feeding/ It used to be on onelist so

you'll find that 'address' as well but this is the spot now. The defensive

eating, low tone, etc. so often go together so hang in there. We've dealt with

the gamut of that and as you said, she's doing just great. (In my mind I see

the jerk in the NICU who, in writing upon discharge, told us that she'd be a

vegetable her whole life and would need intensive intervention and it makes me

just want to take my very 'normal' daughter and parade her by his arrogant

little... oh wait, I digress...) It does resolve itself and you are already

working with specialists so you're on your way! Have you tried those wonderful

'gerber stars'??? Fabulous for kids who have issues as a first food instead of

cheerios because they dissolve so quickly. And Gripz aren't bad once those work

well. Much smaller than cheerios and more flavor! My dd LOVES the cheezit

flavor. They are new on the market so most therapists don't know about them yet

but ours was so thankful we introduced them as they use them all the time now

with other kids. And those small suckers - dum dums - those work well, too.

Chris

*OT* Feeding issues - 11 month old

As most of you know, I have 11 month old, Lilee. Recently we spoke with a local

feeding lasy at W.I.C. She routinely asked us about what Lilee can do, and how

she eats. Now Lilee has given us 3 real scares where she has choked, and I've

had to interviene and physically help her to get it out. When she was born she

had to go to an ENT specialist becasue of the way she sounded when she breathed.

When breathing in, she sounded normal, but when breathing out it sounded like

she had croup or asthma. The ENT said she had 'Laryngomalacia'. This is when the

Larynx (the little flapper thing in your throat) is premature to the rest of the

body, and works a little improperly. But is not life threatening, nor usually

does it cause any other issues, and goes away fully when they are about 2. This

so far has held true, and Lilee's breathing pretty much sounds 85% normal now at

11 months. She said she is going to check into feeding MD specialists, and

contact me later, along with her MD, and Early Intervention. She also mensioned

that she will probably need a feeding study, and Xrays. That she should not be

choking like this. SO NOW I'M PARANOID! I have noticed that when Lilee eats, she

likes to curl her tongue sideways, and push the food in the far side back. Like

where the jaws meet next to the throat whcih puts her in danger for aspiration.

When can cause Pnemonia and the like in itself. She also sucks alot on foods

like its a nipple or something. So I REALLY have to physically watch her when

she eats. She is definatley not one of those babies you can give a french fry to

in the back seat and expect her to be Ok. Has anyone else has feeding issues

like this? What was the outcome?

Christee

[Guest guest]

Marcia, I'm not but I just wanted to say something about the congestion.

My son used to do the same thing and probably still does a little. It is much

better though. They saw on the swallow study that food sometimes moved up his

nasal passaages and this was causing his congestion. I don't know if they saw

anything like this for you or not. I wanted to say that we caught this when my

son was 9 1/2 months old, and he had issues with aspiration or penetration or

food just hanging around because of weak muscles, on every thickness. This last

swallow study early thing month at 19 months, he aspirated on the thin, but

everything else looked good. He had a little hanging up, but a few dry swallows

would clear it. So, big changes in a little time. It is amazing how quickly

they can come around. We were lucky that loved to eat despite this and

the GERD, so it wasn't an issue.

Just wanted to wish you luck as you start your new journey!

11/19/04

Marcia wrote:

I'm not Christee, but my dd has feeding issues and we've just

begun to deal with them. She's 15 months and nearly exclusively breastfed,

eating maybe the equivalent of 8-10 cheerios/day. We had the swallow study done

and just finished up with a 24 ph probe yesterday morning. They're checking for

reflux to explain the daily aspiration she seems to have. Her ped. just keeps

saying she has a cold, but her speech therapist noticed she would get more

congested after we would work with pureed food with her. She is also hyper

sensitive in her face/mouth so doesn't like anything to touch her at all. About

2 months ago the tiniest crumb in her mouth would gag her, now she can eat small

bits of soft or dissolvable food! Yeah! Still have to feed her by hand because

she loaths a spoon and doesn't understand how to pick up food and put it in her

mouth herself. She's also developmentally delayed and has low muscle tone. So

many concerns, but she's doing great, just lots

of stuff to work on

Fortunately, she's pretty healthy in spite of all of it. She breastfeeds great!

No issues there. Just one more journey for her/us. Anyway, what's the name of

the feeding issues group? I'm interested!

Thanks,

Marcia

*OT* Feeding issues - 11 month old

As most of you know, I have 11 month old, Lilee. Recently we spoke with a local

feeding lasy at W.I.C. She routinely asked us about what Lilee can do, and how

she eats. Now Lilee has given us 3 real scares where she has choked, and I've

had to interviene and physically help her to get it out. When she was born she

had to go to an ENT specialist becasue of the way she sounded when she breathed.

When breathing in, she sounded normal, but when breathing out it sounded like

she had croup or asthma. The ENT said she had 'Laryngomalacia'. This is when the

Larynx (the little flapper thing in your throat) is premature to the rest of the

body, and works a little improperly. But is not life threatening, nor usually

does it cause any other issues, and goes away fully when they are about 2. This

so far has held true, and Lilee's breathing pretty much sounds 85% normal now at

11 months. She said she is going to check into feeding MD specialists, and

contact me later, along with her MD,

and Early Intervention. She also mensioned that she will probably need a

feeding study, and Xrays. That she should not be choking like this. SO NOW I'M

PARANOID! I have noticed that when Lilee eats, she likes to curl her tongue

sideways, and push the food in the far side back. Like where the jaws meet next

to the throat whcih puts her in danger for aspiration. When can cause Pnemonia

and the like in itself. She also sucks alot on foods like its a nipple or

something. So I REALLY have to physically watch her when she eats. She is

definatley not one of those babies you can give a french fry to in the back seat

and expect her to be Ok. Has anyone else has feeding issues like this? What was

the outcome?

Christee

[Guest guest]

Christee, Just my two cents, but I don't think it is abnormal for a baby this

age to choke on a french fry and bits of pizza. They are just learning to eat

solids at this age and all of my kids would choke on those types of foods at

this age. is a bit younger (8 months) but I have to smash up everything

that goes into her mouth at this point and I consider that normal.

Carol

Re: *OT* Feeding issues - 11 month old

Does Lilee have sleep apnea? Can you hear her stop breathing at night?

>You know, I've wondered this a time or 2 (my husband has it), but I am not

for sure. If she does, I dont think its bad.

Does she swallow continuously when you feed her a bottle (or breast)?

>She does both continuously and suckles with pausing.

Does she 'chew'?

>Kinda. She Pushes it around alot with her tongue. She does this weird tingue

thing. She will curl it, kinda like twisting it sideways. It is odd how she does

this.

Does she open her mouth wide or is she defensive to anyone touching her mouth?

>She will open well when she is real hungry, and likes what you are giving

her. She is what I have called our 'lazy eater'. When breatfeeding, she only

latches on the nipple itself.

What kinds of food does she eat well? What does she have trouble with?

>Pureed and baby food she does Ok with. The stuff she choked on was a frech

fry, and pizza 2X. Anything that is more of a solid. Ie. crackers, cookies,

noodles, etc she has trouble with.

You said she 'sucks on foods'. Explain that more. Does she suck them to soften

them and then chew or does she not process them at all beside sucking?

> She sucks on them, twists her tongue and pushes them around, and then sucks

some more. More than I have seen any other kid do.

Does she sleep more than normal for her? Is she lethargic?

> If anything, she doesnt sleep enough! She sleep for 8-10hrs at night. Then

power naps (20 min) throughout the day. She will occasionally take 1hr nap.

Lately she has been sleeping a little more.

Is she on the growth curve or at least following her own growth curve?

>She is at the 90%

Is your Ped worried about her as much as the WIC woman is?

> I havent brought it up to her Ped.

Have you been back to the ENT recently?

>No, but I called her office, and they called her today. SHe said that this is

'Normal' for kids who have LaryngoMalacia! She said, no big deal unless it

happen all the time. Said she will 'grow out of it' by 18 months old. I DONT

LIKE THIS AWNSER!

Have they done a scope? No

[Guest guest]

Thanks so much for providing the link and the information, Chris. Grant is 9

months, and as of right now he's just being breastfed. Like Marcia, we've had

no problems there. He won't try food, though, and he's very reluctant to have

somebody put stuff in his mouth. This sounds like a great resource. Thanks

again!

Joy

--- wrote:

> Marcia,

> The feeding group, which has been nothing but helpful is

> http://health.groups.yahoo.com/group/feeding/ It used to be on onelist so

> you'll find that 'address' as well but this is the spot now. The defensive

> eating, low tone, etc. so often go together so hang in there. We've dealt

> with the gamut of that and as you said, she's doing just great. (In my mind

> I see the jerk in the NICU who, in writing upon discharge, told us that she'd

> be a vegetable her whole life and would need intensive intervention and it

> makes me just want to take my very 'normal' daughter and parade her by his

> arrogant little... oh wait, I digress...) It does resolve itself and you

> are already working with specialists so you're on your way! Have you tried

> those wonderful 'gerber stars'??? Fabulous for kids who have issues as a

> first food instead of cheerios because they dissolve so quickly. And Gripz

> aren't bad once those work well. Much smaller than cheerios and more flavor!

> My dd LOVES the cheezit flavor. They are new on the market so most

> therapists don't know about them yet but ours was so thankful we introduced

> them as they use them all the time now with other kids. And those small

> suckers - dum dums - those work well, too.

> Chris

>

Rose (1-99) http://www.geocities.com/joybelle15/rosesclubfootpage.html

Iris (2-01)

Spencer (3-03)

Grant (9-05) http://www.caringbridge.org/visit/grantphilip

__________________________________________________

[Guest guest]

, thanks for the note. On the swallow study they saw her reflux and she

has a delayed swallow (the liquid would sit at the base of her tongue for a

couple of seconds before she would swallow). They're thinking she may be

aspirating due to her reflux. She also has low muscle tone which makes her more

prone to this sort of thing. The problem we had with the swallow study is that

the first thing the speech pathologist did was put rubber gloves on. Janna hates

them and immediately started to scream, even though she hadn't been touched.

(Her st uses them when doing her face exercises as she doesn't have full range

of motion in her cheeks or lips). Then they insisted we try the think liquids

with a bottle, which she hates so now she's screaming even louder. Then we did

the syringe for the thin liquids when they realized the bottle just wasn't

happening. Then we did some applesauce, which she hates too. She can't stand

pureed food. She was so upset by the time we got to the little star snacks she

wouldn't even close her mouth, much less eat it. So the study would have gone

better if they had listened to mom here who told them, skip the rubber gloves

and let me feed her, it'll be fine, let me do the thin liquid with a syringe and

it'll be fine and save the apple sauce for last cuz it's gonna piss her off.

Start with maybe the stars as she loves them, then do thin liquids and then the

applesauce. I dunno. Do they not hear parents? Do they think we make this stuff

up just for laughs? It was frustrating. But oh, well, at least she didn't spit

the stuff out. She did swallow inbetween screaming so we could at least see that

her structure was fine....Thanks again for the note. I know this stuff will

probably be non-existent in a year or two. Until then we'll keep at it

Marcia

*OT* Feeding issues - 11 month old

As most of you know, I have 11 month old, Lilee. Recently we spoke with a

local feeding lasy at W.I.C. She routinely asked us about what Lilee can do, and

how she eats. Now Lilee has given us 3 real scares where she has choked, and

I've had to interviene and physically help her to get it out. When she was born

she had to go to an ENT specialist becasue of the way she sounded when she

breathed. When breathing in, she sounded normal, but when breathing out it

sounded like she had croup or asthma. The ENT said she had 'Laryngomalacia'.

This is when the Larynx (the little flapper thing in your throat) is premature

to the rest of the body, and works a little improperly. But is not life

threatening, nor usually does it cause any other issues, and goes away fully

when they are about 2. This so far has held true, and Lilee's breathing pretty

much sounds 85% normal now at 11 months. She said she is going to check into

feeding MD specialists, and contact me later, along with her MD,

and Early Intervention. She also mensioned that she will probably need a

feeding study, and Xrays. That she should not be choking like this. SO NOW I'M

PARANOID! I have noticed that when Lilee eats, she likes to curl her tongue

sideways, and push the food in the far side back. Like where the jaws meet next

to the throat whcih puts her in danger for aspiration. When can cause Pnemonia

and the like in itself. She also sucks alot on foods like its a nipple or

something. So I REALLY have to physically watch her when she eats. She is

definatley not one of those babies you can give a french fry to in the back seat

and expect her to be Ok. Has anyone else has feeding issues like this? What was

the outcome?

Christee

[Guest guest]

Marcia~ Sorry the study went so badly. I always feed and they let me do

it in whatever order I do it in at home. It is crazy they did it the way they

did. If they have to do it again, is there another hospital you can do to?

was pretty fun the first time we tried solid food on the swallow study.

He sucked on the cheerio until all the barium was off, spit it out, and then

chewed up the cheerio! LOL. We all laughed and called it quits.

Good luck with everything!

Marcia wrote:

, thanks for the note. On the swallow study they saw her

reflux and she has a delayed swallow (the liquid would sit at the base of her

tongue for a couple of seconds before she would swallow). They're thinking she

may be aspirating due to her reflux. She also has low muscle tone which makes

her more prone to this sort of thing. The problem we had with the swallow study

is that the first thing the speech pathologist did was put rubber gloves on.

Janna hates them and immediately started to scream, even though she hadn't been

touched. (Her st uses them when doing her face exercises as she doesn't have

full range of motion in her cheeks or lips). Then they insisted we try the think

liquids with a bottle, which she hates so now she's screaming even louder. Then

we did the syringe for the thin liquids when they realized the bottle just

wasn't happening. Then we did some applesauce, which she hates too. She can't

stand pureed food. She was so upset by the time we

got to the little star snacks she wouldn't even close her mouth, much less eat

it. So the study would have gone better if they had listened to mom here who

told them, skip the rubber gloves and let me feed her, it'll be fine, let me do

the thin liquid with a syringe and it'll be fine and save the apple sauce for

last cuz it's gonna piss her off. Start with maybe the stars as she loves them,

then do thin liquids and then the applesauce. I dunno. Do they not hear parents?

Do they think we make this stuff up just for laughs? It was frustrating. But oh,

well, at least she didn't spit the stuff out. She did swallow inbetween

screaming so we could at least see that her structure was fine....Thanks again

for the note. I know this stuff will probably be non-existent in a year or two.

Until then we'll keep at it

Marcia

*OT* Feeding issues - 11 month old

As most of you know, I have 11 month old, Lilee. Recently we spoke with a local

feeding lasy at W.I.C. She routinely asked us about what Lilee can do, and how

she eats. Now Lilee has given us 3 real scares where she has choked, and I've

had to interviene and physically help her to get it out. When she was born she

had to go to an ENT specialist becasue of the way she sounded when she breathed.

When breathing in, she sounded normal, but when breathing out it sounded like

she had croup or asthma. The ENT said she had 'Laryngomalacia'. This is when the

Larynx (the little flapper thing in your throat) is premature to the rest of the

body, and works a little improperly. But is not life threatening, nor usually

does it cause any other issues, and goes away fully when they are about 2. This

so far has held true, and Lilee's breathing pretty much sounds 85% normal now at

11 months. She said she is going to check into feeding MD specialists, and

contact me later, along with her MD,

and Early Intervention. She also mensioned that she will probably need a feeding

study, and Xrays. That she should not be choking like this. SO NOW I'M PARANOID!

I have noticed that when Lilee eats, she likes to curl her tongue sideways, and

push the food in the far side back. Like where the jaws meet next to the throat

whcih puts her in danger for aspiration. When can cause Pnemonia and the like in

itself. She also sucks alot on foods like its a nipple or something. So I REALLY

have to physically watch her when she eats. She is definatley not one of those

babies you can give a french fry to in the back seat and expect her to be Ok.

Has anyone else has feeding issues like this? What was the outcome?

Christee

[Guest guest]

Marcia,

I haven't really been following this thread but I noticed your post

here and just wanted to say that it really sucks that they wouldn't

listen to you. Sorry it was such a terrible experience for Janna and

you, I know this has got to be really frustrating for you. Is it time

to find someone new who will listen to mama?

> I'm not Christee, but my dd has feeding issues and we've

just begun to deal with them. She's 15 months and nearly exclusively

breastfed, eating maybe the equivalent of 8-10 cheerios/day. We had

the swallow study done and just finished up with a 24 ph probe

yesterday morning. They're checking for reflux to explain the daily

aspiration she seems to have. Her ped. just keeps saying she has a

cold, but her speech therapist noticed she would get more congested

after we would work with pureed food with her. She is also hyper

sensitive in her face/mouth so doesn't like anything to touch her at

all. About 2 months ago the tiniest crumb in her mouth would gag her,

now she can eat small bits of soft or dissolvable food! Yeah! Still

have to feed her by hand because she loaths a spoon and doesn't

understand how to pick up food and put it in her mouth herself. She's

also developmentally delayed and has low muscle tone. So many

concerns, but she's doing great, just lots

> of stuff to work on

> Fortunately, she's pretty healthy in spite of all of it. She

breastfeeds great! No issues there. Just one more journey for her/us.

Anyway, what's the name of the feeding issues group? I'm interested!

> Thanks,

> Marcia

>

> *OT* Feeding issues - 11 month old

>

> As most of you know, I have 11 month old, Lilee. Recently we spoke

with a local feeding lasy at W.I.C. She routinely asked us about what

Lilee can do, and how she eats. Now Lilee has given us 3 real scares

where she has choked, and I've had to interviene and physically help

her to get it out. When she was born she had to go to an ENT

specialist becasue of the way she sounded when she breathed. When

breathing in, she sounded normal, but when breathing out it sounded

like she had croup or asthma. The ENT said she had 'Laryngomalacia'.

This is when the Larynx (the little flapper thing in your throat) is

premature to the rest of the body, and works a little improperly. But

is not life threatening, nor usually does it cause any other issues,

and goes away fully when they are about 2. This so far has held true,

and Lilee's breathing pretty much sounds 85% normal now at 11 months.

She said she is going to check into feeding MD specialists, and

contact me later, along with her MD,

> and Early Intervention. She also mensioned that she will probably

need a feeding study, and Xrays. That she should not be choking like

this. SO NOW I'M PARANOID! I have noticed that when Lilee eats, she

likes to curl her tongue sideways, and push the food in the far side

back. Like where the jaws meet next to the throat whcih puts her in

danger for aspiration. When can cause Pnemonia and the like in itself.

She also sucks alot on foods like its a nipple or something. So I

REALLY have to physically watch her when she eats. She is definatley

not one of those babies you can give a french fry to in the back seat

and expect her to be Ok. Has anyone else has feeding issues like this?

What was the outcome?

> Christee

>

>

[Guest guest]

Well, it was just a one time thing - the swallow study. It was at the hospital,

not in a dr. office. If it was her dr. who did this we would find someone new.

Was not impressed with them at all. It was a different hospital than we normally

go to (can't believe we have a " normal hospital " ). Fortunately her speech

thereapist has listened and no longer does the rubber gloves. I convinced her

that if she just washes her hands well than I'm o.k. w/using bare hands (heaven

knows my other kids have put far worse in their mouths). Anwyay, just another

day in the life of Janna....Thanks for the concern though . I think we're

close to being done with routine testing for Janna. We just did a 24 hr ph probe

so hopefully that will tell them what they need to know about her

reflux/aspiration. If they find she's not aspirating from reflux I'll be

frustrated because that means it's something else.....oh, and one more

geneticist in August and then probably a muscle biopsy, unless the geneticist

finds something the other geneticist and the neuro overlooked. We get to travel

to Atlanta for the biopsy. But, it should be a quick procedure and then she

either has something or she doesn't, but either way we're done with testing

YEAH!

Marcia

*OT* Feeding issues - 11 month old

>

> As most of you know, I have 11 month old, Lilee. Recently we spoke

with a local feeding lasy at W.I.C. She routinely asked us about what

Lilee can do, and how she eats. Now Lilee has given us 3 real scares

where she has choked, and I've had to interviene and physically help

her to get it out. When she was born she had to go to an ENT

specialist becasue of the way she sounded when she breathed. When

breathing in, she sounded normal, but when breathing out it sounded

like she had croup or asthma. The ENT said she had 'Laryngomalacia'.

This is when the Larynx (the little flapper thing in your throat) is

premature to the rest of the body, and works a little improperly. But

is not life threatening, nor usually does it cause any other issues,

and goes away fully when they are about 2. This so far has held true,

and Lilee's breathing pretty much sounds 85% normal now at 11 months.

She said she is going to check into feeding MD specialists, and

contact me later, along with her MD,

> and Early Intervention. She also mensioned that she will probably

need a feeding study, and Xrays. That she should not be choking like

this. SO NOW I'M PARANOID! I have noticed that when Lilee eats, she

likes to curl her tongue sideways, and push the food in the far side

back. Like where the jaws meet next to the throat whcih puts her in

danger for aspiration. When can cause Pnemonia and the like in itself.

She also sucks alot on foods like its a nipple or something. So I

REALLY have to physically watch her when she eats. She is definatley

not one of those babies you can give a french fry to in the back seat

and expect her to be Ok. Has anyone else has feeding issues like this?

What was the outcome?

> Christee

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