Re: caitlyns video swallow not good

[Guest guest]

Hi Rita,

_http://www.new-vis.com/fym/pdf/papers/feeding.10.pdf_

(http://www.new-vis.com/fym/pdf/papers/feeding.10.pdf)

This 6 page article explains what needs to open and close properly in order

for food to

stay out of the nose and lungs, and air to stay out of the stomach.

In 's case, she aspirated some of all fluids given as an infant, and

therefore had a

g-tube, but the condition improved on it's own in time, and she eats all

foods and all

varieties and textures by mouth since she was 3.

So, time might take care of the problem.

I did see that there is a surgical correction, but that it can increase

conditions of apnea.

----

Were they giving her fluids only during the swallow study? I'm surprised

they couldn't

identify the source of the problem.

---

I would guess they'll recommend a " wait and see " attitude, but in the

meantime may

have ideas for you to continue positive stimulation, so that when she's

grown some more,

she'll still be ready to tackle oral feeds.

;-)

in Ma.

************************************** See what's free at http://www.aol.com.

[Guest guest]

We have the same trouble with Meagan. Everything looks good on the outside;

she wants food and eats it...she doesn't even cough. But, the video shows

that she is aspirating food into her lungs, and she isn't even trying to

stop it....hence the no coughing. It's scary. I think it is something they

eventually get over, but I'm not sure. Anyone have any input?

, mommy to Meagan (CHaRgE) and 2 1/2 year old twins, and big

brother 5 this month, married to the best daddy in the world for 10

years!

The mention of my child's name might make me cry. Not mentioning my child's

name will break my heart. Unknown

[Guest guest]

My son had a not so good swallow study and they recommended that we thicken his

food. He does well with his foods. No thickening needed their. He also had the

same problem with the fluids he drank. They all went down into his lungs except

occassionally his milk didn't.

That is my suggestion.

ritaskeoch ritaskeoch@...> wrote:

caitlyn had her video swallow test the other day, not good news 50%

went to her lungs, can anyone explain why and how this happens caitlyn

did make some great swallows so it is so sad that we cant try anymore

but its hard for me and im sure i speak for kellie to and for all the

other mums as to why and how it goes to the lungs does this mean there

is not much hope for these children to ever eat but we all have to have

hope, caitlyn does seem so interested in eating at the moment she

watches us all the time and loves licking everything. it is strange but

im having problems after everything she has gone through that this is

one of the things that is bothering me at the moment it is so sad that

she has to watch us and maybe wondering why we dont give her anything

now it must be so confusing for her please if anyone can explain is

there not a opperation that could put this right even a private opp

anywhere can it corect itself we dont understand how this happens i

know alex jacub has the same problem and probs do loads of you out

there but i need some input on how and why and what can be done , if

drs can do major heart surgery to save our little angels then why cant

anything be done to stop food going to the lungs .

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

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[Guest guest]

I'm 28 years old, and still asperate into the lungs when I eat or drink

anything. There isn't much anyone can do to correct the problem, or find a way

to help me not asperate. It's a problem I've had all my life, and there is

practically nothing scientific that I can think of that will be able to help you

and Caitlyn.

But I can give you a few personal pointers that might help her asperate less.

Making sure that she is concentrating on what's she's doing, not distracted by

what's around her, or having other people forcing her to communicate while she's

eating or drinking.

That she's aware that she's swallowing her mouthful, waiting before taking

another mouthful, and allowing the food/drink, to fully go down. Try and teach

her that if she feels that something went the wrong way, she needs to cough or

clear her throat to force it down the right tube.

If those things don't work, then time, patience, and work on her part will

eventually make swallowing a better and enjoyable experience for her.

Sincerely yours; Krista Bach. 28 year old CHARGEr.

ritaskeoch ritaskeoch@...> wrote:

caitlyn had her video swallow test the other day, not good news 50%

went to her lungs, can anyone explain why and how this happens caitlyn

did make some great swallows so it is so sad that we cant try anymore

but its hard for me and im sure i speak for kellie to and for all the

other mums as to why and how it goes to the lungs does this mean there

is not much hope for these children to ever eat but we all have to have

hope, caitlyn does seem so interested in eating at the moment she

watches us all the time and loves licking everything. it is strange but

im having problems after everything she has gone through that this is

one of the things that is bothering me at the moment it is so sad that

she has to watch us and maybe wondering why we dont give her anything

now it must be so confusing for her please if anyone can explain is

there not a opperation that could put this right even a private opp

anywhere can it corect itself we dont understand how this happens i

know alex jacub has the same problem and probs do loads of you out

there but i need some input on how and why and what can be done , if

drs can do major heart surgery to save our little angels then why cant

anything be done to stop food going to the lungs .

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

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[Guest guest]

I can completely relate to your frustration. We went through the same scenario

for about 3.5 years. I know there are other families that have this problem for

much longer. In my daughter's case, the problem was a very uncoordinated

swallow, unilateral vocal cord paralysis and a bit of a floppy trachea. I

believe though, that there are many different issues and they vary from child to

child.

The good news is that a good portion of the kids outgrow many of these issues

and will eventually be cleared to feed orally. Work with OT and SLP can help to

give oral feedback and practise chewing( on non food items of course). Hope you

get some answers.

Jeanie Colp

mom to MacKenzie 9, Tyler 15 & Zachary 13

[Guest guest]

Krista,

Thanks for all of your advice. From the sounds of it, you do eat orally

somewhat. Can you tell me if you are tube fed at all? Do you still ocassionally

aspirate? What types of food and or liquid give you the most trouble? When you

do aspirate, what does it feel like? Sorry for all the questions but I figure

that you would have the most knowledge of this issue. I've heard lots about you

from Weir, glad to finally connect with you.

Jeanie Colp

mom to MacKenzie 9, Tyler 15 & Zachary 13

Nova Scotia, Canada

[Guest guest]

I do have a G-J Tube, but do eat somewhat, and drink Ensure if I can get it

down. I still ocassionally aspirate, which if I don't get it out, turns into

bronchoitis. I can swallow soft things, such as yogurt, rice pudding, cheese,

lady fingers dipped in tea. The foods that give me the most trouble at the

moment is pasta, meat, fish, practically anything that is more solid than what a

baby eats.

When I aspirate it sometimes feels like something lodged in my lung, and I

force myself to cough. Other times I don't feel anything for a couple of days,

then I feel it and know, it went down the wrong way.

I was reading some e-mails and someone just reminded me of something else you

can try. Mouth and tongue exercises. With my OT I used to do exercises with a

cherrio on a string. Moving it from one side of the mouth to the other, along

the roof of my mouth, moving it from front to back - the string is there just in

case I accidently moved it to far, and choked - they could yank it out in time.

I also did some mirror exercises, where I sat in front of a mirror and watched

myself eat and drink. But I don't advise that. I found it harder to swallow

while watching myself, then if I just sat on my own and concentrated without the

mirror.

See you later. And write soon. Sincerely yours; Krista.

Jeanie jeaniecolp@...> wrote:

Krista,

Thanks for all of your advice. From the sounds of it, you do eat orally

somewhat. Can you tell me if you are tube fed at all? Do you still ocassionally

aspirate? What types of food and or liquid give you the most trouble? When you

do aspirate, what does it feel like? Sorry for all the questions but I figure

that you would have the most knowledge of this issue. I've heard lots about you

from Weir, glad to finally connect with you.

Jeanie Colp

mom to MacKenzie 9, Tyler 15 & Zachary 13

Nova Scotia, Canada

[Guest guest]

we all will grow otu eventualy i haveand did but sitll do aspirate but not

as bad so i guess u can say it will get better but nto compleatly go

>

> I do have a G-J Tube, but do eat somewhat, and drink Ensure if I can get

> it down. I still ocassionally aspirate, which if I don't get it out, turns

> into bronchoitis. I can swallow soft things, such as yogurt, rice pudding,

> cheese, lady fingers dipped in tea. The foods that give me the most trouble

> at the moment is pasta, meat, fish, practically anything that is more solid

> than what a baby eats.

>

> When I aspirate it sometimes feels like something lodged in my lung, and I

> force myself to cough. Other times I don't feel anything for a couple of

> days, then I feel it and know, it went down the wrong way.

>

> I was reading some e-mails and someone just reminded me of something else

> you can try. Mouth and tongue exercises. With my OT I used to do exercises

> with a cherrio on a string. Moving it from one side of the mouth to the

> other, along the roof of my mouth, moving it from front to back - the string

> is there just in case I accidently moved it to far, and choked - they could

> yank it out in time.

>

> I also did some mirror exercises, where I sat in front of a mirror and

> watched myself eat and drink. But I don't advise that. I found it harder to

> swallow while watching myself, then if I just sat on my own and concentrated

> without the mirror.

>

> See you later. And write soon. Sincerely yours; Krista.

>

>

> Jeanie jeaniecolp@... > wrote:

> Krista,

>

> Thanks for all of your advice. From the sounds of it, you do eat orally

> somewhat. Can you tell me if you are tube fed at all? Do you still

> ocassionally aspirate? What types of food and or liquid give you the most

> trouble? When you do aspirate, what does it feel like? Sorry for all the

> questions but I figure that you would have the most knowledge of this issue.

> I've heard lots about you from Weir, glad to finally connect with you.

>

> Jeanie Colp

> mom to MacKenzie 9, Tyler 15 & Zachary 13

> Nova Scotia, Canada

>

>

[Guest guest]

Krista,

You are so amazing!!

pam

>

>

>

>

> I'm 28 years old, and still asperate into the lungs when I eat or drink

> anything. There isn't much anyone can do to correct the problem, or find a way

> to help me not asperate. It's a problem I've had all my life, and there is

> practically nothing scientific that I can think of that will be able to help

> you and Caitlyn.

>

> But I can give you a few personal pointers that might help her asperate less.

>

> Making sure that she is concentrating on what's she's doing, not distracted

> by what's around her, or having other people forcing her to communicate while

> she's eating or drinking.

>

> That she's aware that she's swallowing her mouthful, waiting before taking

> another mouthful, and allowing the food/drink, to fully go down. Try and teach

> her that if she feels that something went the wrong way, she needs to cough or

> clear her throat to force it down the right tube.

>

> If those things don't work, then time, patience, and work on her part will

> eventually make swallowing a better and enjoyable experience for her.

>

> Sincerely yours; Krista Bach. 28 year old CHARGEr.

>

> ritaskeoch ritaskeoch@... > wrote:

> caitlyn had her video swallow test the other day, not good news 50%

> went to her lungs, can anyone explain why and how this happens caitlyn

> did make some great swallows so it is so sad that we cant try anymore

> but its hard for me and im sure i speak for kellie to and for all the

> other mums as to why and how it goes to the lungs does this mean there

> is not much hope for these children to ever eat but we all have to have

> hope, caitlyn does seem so interested in eating at the moment she

> watches us all the time and loves licking everything. it is strange but

> im having problems after everything she has gone through that this is

> one of the things that is bothering me at the moment it is so sad that

> she has to watch us and maybe wondering why we dont give her anything

> now it must be so confusing for her please if anyone can explain is

> there not a opperation that could put this right even a private opp

> anywhere can it corect itself we dont understand how this happens i

> know alex jacub has the same problem and probs do loads of you out

> there but i need some input on how and why and what can be done , if

> drs can do major heart surgery to save our little angels then why cant

> anything be done to stop food going to the lungs .

>

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

> All new Yahoo! Mail

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

> Get news delivered. Enjoy RSS feeds right on your Mail page.

>

>

[Guest guest]

Krista,

Thanks so much for your reply. You and all of the older people with CHARGE are

absolutely invaluable to this list and the CHARGE community in general.

MacKenzie doesn't have much of a cough reflex either. It was shocking to watch

her actually swallow and apirate with so much as a tickle. Thankfully she

outgrew the aspiration problem but is still at risk for choking. She doesn't

chew well and tends to stuff her mouth before she actually swallows. Trying to

work on this with her is the cause of many tantrums. She likes to eat things

with a bread like consistancy and actually doesn't care for pureed foods. I

think she needs to have something solid to feel before she can swallow.

She also tends to hold food and it gets stuck in her palate. I'm always checking

to make sure there are no left overs.

Thanks again Krista! Are you going to the conference?

Jeanie Colp