Re: ALISSA PASSED HER FEEDING TEST!!!!

February 23, 2006

This is awesome news,how old is she now?I am new to the group,from South

Africa,my friends baby has CHARGE and I am getting every bit of info for her

that I can.Did she have a trache and when was it taken out,if I may ask?

Good luck to both of you,you have come this far,I am sure it will work out

for all of you.

Regards

ALISSA PASSED HER FEEDING TEST!!!!

I guess with every bad day there is a better day!! We went to sick

kids hospital today and Alissa passed her feeding study!! Yepee !!! I

can't believe it. I'm in shock!! She is now safe to drink and eat by

mouth!! SHe still has severe reflux, not to mention she freaks out if

you put anything in her mouth so I have no idea how I'm gonna get past

this but in the mean time now she can!!

Are there chargers out there that even though they are allowed to eat

and drink, they don't have the cordination to do that? IS that

possible or is it like anything else, the more you work with them

they'll eventually get it? THats one issue, the other is although

she's safe to eat I don't know if the reflux will allow her to. Here

I go on another feeding journey... help!

CHARGE SYNDROME LISTSERV PHOTO PAGE:

http://www.imagestation.com/album/?id=2117043995

Membership of this email support groups does not constitute membership in

the CHARGE Syndrome Foundation or CHARGE Syndrome Canada.

For information about the CHARGE Syndrome

Foundation or to become a member (and get the newsletter),

please contact marion@... or visit

the web site at http://www.chargesyndrome.org

(CHARGE Syndrome Canada - http://www.chargesyndrome.ca)

8th International

CHARGE Syndrome Conference, July, 2007. Information will be available at

www.chargesyndrome.org or by calling 1-.

February 23, 2006

iff you call lack of swallowing well yeah i do have that prob certain

textures i cant mannage but i can still eat great news on the hearing that

wil mean better balance to as this is often a factor in chargers to which

atributes to loos of hearing so more plusses for you and alissa lol hugs

ellen

On 23/02/06, bcoetzer@...

wrote:

>

> This is awesome news,how old is she now?I am new to the group,from South

> Africa,my friends baby has CHARGE and I am getting every bit of info for

> her

> that I can.Did she have a trache and when was it taken out,if I may ask?

> Good luck to both of you,you have come this far,I am sure it will work out

> for all of you.

> Regards

>

> ALISSA PASSED HER FEEDING TEST!!!!

>

> I guess with every bad day there is a better day!! We went to sick

> kids hospital today and Alissa passed her feeding study!! Yepee !!! I

> can't believe it. I'm in shock!! She is now safe to drink and eat by

> mouth!! SHe still has severe reflux, not to mention she freaks out if

> you put anything in her mouth so I have no idea how I'm gonna get past

> this but in the mean time now she can!!

>

> Are there chargers out there that even though they are allowed to eat

> and drink, they don't have the cordination to do that? IS that

> possible or is it like anything else, the more you work with them

> they'll eventually get it? THats one issue, the other is although

> she's safe to eat I don't know if the reflux will allow her to. Here

> I go on another feeding journey... help!

>

> CHARGE SYNDROME LISTSERV PHOTO PAGE:

> http://www.imagestation.com/album/?id=2117043995

>

> Membership of this email support groups does not constitute membership in

> the CHARGE Syndrome Foundation or CHARGE Syndrome Canada.

> For information about the CHARGE Syndrome

> Foundation or to become a member (and get the newsletter),

> please contact marion@... or visit

> the web site at http://www.chargesyndrome.org

> (CHARGE Syndrome Canada - http://www.chargesyndrome.ca)

>

> 8th International

> CHARGE Syndrome Conference, July, 2007. Information will be available at

> www.chargesyndrome.org or by calling 1-.

>

February 23, 2006

iff you call lack of swallowing well yeah i do have that prob certain

textures i cant mannage but i can still eat great news on the hearing that

wil mean better balance to as this is often a factor in chargers to which

atributes to loos of hearing so more plusses for you and alissa lol hugs

ellen

On 23/02/06, bcoetzer@...

wrote:

>

> This is awesome news,how old is she now?I am new to the group,from South

> Africa,my friends baby has CHARGE and I am getting every bit of info for

> her

> that I can.Did she have a trache and when was it taken out,if I may ask?

> Good luck to both of you,you have come this far,I am sure it will work out

> for all of you.

> Regards

>

> ALISSA PASSED HER FEEDING TEST!!!!

>

> I guess with every bad day there is a better day!! We went to sick

> kids hospital today and Alissa passed her feeding study!! Yepee !!! I

> can't believe it. I'm in shock!! She is now safe to drink and eat by

> mouth!! SHe still has severe reflux, not to mention she freaks out if

> you put anything in her mouth so I have no idea how I'm gonna get past

> this but in the mean time now she can!!

>

> Are there chargers out there that even though they are allowed to eat

> and drink, they don't have the cordination to do that? IS that

> possible or is it like anything else, the more you work with them

> they'll eventually get it? THats one issue, the other is although

> she's safe to eat I don't know if the reflux will allow her to. Here

> I go on another feeding journey... help!

>

> CHARGE SYNDROME LISTSERV PHOTO PAGE:

> http://www.imagestation.com/album/?id=2117043995

>

> Membership of this email support groups does not constitute membership in

> the CHARGE Syndrome Foundation or CHARGE Syndrome Canada.

> For information about the CHARGE Syndrome

> Foundation or to become a member (and get the newsletter),

> please contact marion@... or visit

> the web site at http://www.chargesyndrome.org

> (CHARGE Syndrome Canada - http://www.chargesyndrome.ca)

>

> 8th International

> CHARGE Syndrome Conference, July, 2007. Information will be available at

> www.chargesyndrome.org or by calling 1-.

>

February 23, 2006

> Are there chargers out there that even though they are allowed to eat

> and drink, they don't have the cordination to do that?

>

The quick answer is yes. My son Edddie (6) has been fed orally since birth,

but it has taken years of working with a speech-language pathologist (some OTs

also do feeding) to get him to where he is today: soft foods like oatmeal are

no problem; small pieces of chicken, melon, bread are OK too, when he's

willing to chew; crunchy is still not his thing. (He can bite down but then

won't

know what to do with it.) We still grind his food at mealtimes & try to

challenge him at therapy and snacktime. When we started, he couldn't swallow

even

pureed baby food without immediately taking a sip from his bottle--he didn't

know

how to get the food to the place in his mouth to trigger the swallow reflex.

joanne

February 23, 2006

> Are there chargers out there that even though they are allowed to eat

> and drink, they don't have the cordination to do that?

>

The quick answer is yes. My son Edddie (6) has been fed orally since birth,

but it has taken years of working with a speech-language pathologist (some OTs

also do feeding) to get him to where he is today: soft foods like oatmeal are

no problem; small pieces of chicken, melon, bread are OK too, when he's

willing to chew; crunchy is still not his thing. (He can bite down but then

won't

know what to do with it.) We still grind his food at mealtimes & try to

challenge him at therapy and snacktime. When we started, he couldn't swallow

even

pureed baby food without immediately taking a sip from his bottle--he didn't

know

how to get the food to the place in his mouth to trigger the swallow reflex.

joanne

February 23, 2006

> Are there chargers out there that even though they are allowed to eat

> and drink, they don't have the cordination to do that?

>

The quick answer is yes. My son Edddie (6) has been fed orally since birth,

but it has taken years of working with a speech-language pathologist (some OTs

also do feeding) to get him to where he is today: soft foods like oatmeal are

no problem; small pieces of chicken, melon, bread are OK too, when he's

willing to chew; crunchy is still not his thing. (He can bite down but then

won't

know what to do with it.) We still grind his food at mealtimes & try to

challenge him at therapy and snacktime. When we started, he couldn't swallow

even

pureed baby food without immediately taking a sip from his bottle--he didn't

know

how to get the food to the place in his mouth to trigger the swallow reflex.

joanne

February 23, 2006

great news and uplifting to take away the blues of yesterday, as

usual in chargeland the roller coaster ride of ups and

downs....heres to the up's which we all prefer, well done to alissa.

Amelie cant eat she failed her first videofluroscopy, but we were

advised to do little tasters when she is well, so we let her taste

lolly pops, and melted chocolate, only tiny amounts, she loves it

and I think the idea is to keep her interested for maybe when she is

older. So I wouldnt focus on full blown eating just introduction to

occasional tastes and only introducing one taste at one meal rather

than too much. a slow process but she will get there.

Good luck

Lesley x

>

> I guess with every bad day there is a better day!! We went to sick

> kids hospital today and Alissa passed her feeding study!!

Yepee !!! I

> can't believe it. I'm in shock!! She is now safe to drink and eat

by

> mouth!! SHe still has severe reflux, not to mention she freaks out

if

> you put anything in her mouth so I have no idea how I'm gonna get

past

> this but in the mean time now she can!!

>

> Are there chargers out there that even though they are allowed to

eat

> and drink, they don't have the cordination to do that? IS that

> possible or is it like anything else, the more you work with them

> they'll eventually get it? THats one issue, the other is although

> she's safe to eat I don't know if the reflux will allow her to.

Here

> I go on another feeding journey... help!

>

February 23, 2006

great news and uplifting to take away the blues of yesterday, as

usual in chargeland the roller coaster ride of ups and

downs....heres to the up's which we all prefer, well done to alissa.

Amelie cant eat she failed her first videofluroscopy, but we were

advised to do little tasters when she is well, so we let her taste

lolly pops, and melted chocolate, only tiny amounts, she loves it

and I think the idea is to keep her interested for maybe when she is

older. So I wouldnt focus on full blown eating just introduction to

occasional tastes and only introducing one taste at one meal rather

than too much. a slow process but she will get there.

Good luck

Lesley x

>

> I guess with every bad day there is a better day!! We went to sick

> kids hospital today and Alissa passed her feeding study!!

Yepee !!! I

> can't believe it. I'm in shock!! She is now safe to drink and eat

by

> mouth!! SHe still has severe reflux, not to mention she freaks out

if

> you put anything in her mouth so I have no idea how I'm gonna get

past

> this but in the mean time now she can!!

>

> Are there chargers out there that even though they are allowed to

eat

> and drink, they don't have the cordination to do that? IS that

> possible or is it like anything else, the more you work with them

> they'll eventually get it? THats one issue, the other is although

> she's safe to eat I don't know if the reflux will allow her to.

Here

> I go on another feeding journey... help!

>

February 23, 2006

great news and uplifting to take away the blues of yesterday, as

usual in chargeland the roller coaster ride of ups and

downs....heres to the up's which we all prefer, well done to alissa.

Amelie cant eat she failed her first videofluroscopy, but we were

advised to do little tasters when she is well, so we let her taste

lolly pops, and melted chocolate, only tiny amounts, she loves it

and I think the idea is to keep her interested for maybe when she is

older. So I wouldnt focus on full blown eating just introduction to

occasional tastes and only introducing one taste at one meal rather

than too much. a slow process but she will get there.

Good luck

Lesley x

>

> I guess with every bad day there is a better day!! We went to sick

> kids hospital today and Alissa passed her feeding study!!

Yepee !!! I

> can't believe it. I'm in shock!! She is now safe to drink and eat

by

> mouth!! SHe still has severe reflux, not to mention she freaks out

if

> you put anything in her mouth so I have no idea how I'm gonna get

past

> this but in the mean time now she can!!

>

> Are there chargers out there that even though they are allowed to

eat

> and drink, they don't have the cordination to do that? IS that

> possible or is it like anything else, the more you work with them

> they'll eventually get it? THats one issue, the other is although

> she's safe to eat I don't know if the reflux will allow her to.

Here

> I go on another feeding journey... help!

>

February 23, 2006

Alissa-

Quick reply here -- I haven't read on yet to know what others have said so

forgive me if this is repetitious.

Aubrie could not coordinate the suck-swallow-breath. She never really did

get it. But she was off her feeding tube at age 1.5 yrs and is now able to

eat anything with great success (at age 8).

In our experience, learning to eat was a big challenge. It was hard work.

We needed guidance from our speech therapist in order to have any clue how

to progress. It felt like one step forward, 2 steps back. I remember lots

of discouraging times. But when I look back, she got thru it in about a

year, so it really went quite quickly!

I was really hung up on having an experienced feeding therapist in the

beginning. We drove 2+ hours each way to go to the children's hospital.

Eventually, we couldn't keep up that schedule. I had learned enough from

those experts to feel confident with someone local. Our local SLP had much

less experience. She'd never weaned a child from tube feeding. But she was

dedicated and could think outside the box. She was my greatest ally in

getting thru that transition. The doctors were so concerned about nutrition

that using the feeding tube or not was simply not an issue to them. This

local woman and I did it basically on our own by following our instincts

combined with what she knew and researched and what I had learned along the

way.

So if you don't have someone like that, look for someone. You need a good

speech therapist. And an OT as well since the sensory issues are huge.

Some things we did to " awaken " Aubrie's taste buds -- remember we don't know

about our kids' sense of taste til they are old enough to tell us or

indicate somehow. We gave her pickles to suck on, PopRocks candy, sour

lollipops, etc. We did not clean messes off her face too quickly because we

wanted her to tolerate the feel of " stuff " on her face and mouth. We used a

Nuk brush and vibrating toys in her mouth.

She also had severe GE reflux. She didn't have a Nissen -- we managed it

with meds and positioning until she outgrew it. And thankfully she did

outgrow it. She had to work very hard to tolerate the food in her mouth and

to swallow and then not to vomit. It's almost painful to watch the video

and see her struggle and work so hard. But even as a baby she was

persistent!

Michele W

mom to Aubrie 8 yrs CHARGE, 14 yrs and wife to DJ

February 23, 2006

,

I do not want to burst your balloon. I do want to throw in a word of

caution, so she can move forward safely, and hopefully reduce setbacks.

It is awesome that the radiologist saw no signs of aspiration during that

swallow study - simply remember that it does not mean she never aspirates

while swallowing, it means she didn't then. And of course it says nothing

about if she aspirates from reflux.

Of course move forward with eating and celebrate the joy of it.

Simply remember that Alissa's cues are far more reliable of an indicator

than any x-ray. You know her best, " listen " to what her body tells you as

you move forward. She KNOWS what is good for her and what is not, and

generally that means what she has control of. Respect her cues of this is

too much, or this is too fast for me. Respect that some days she may do

great and other days not be able to take anything. How well they do can

change, simply because their energy is going to development in other areas,

or they are a little more " floppy " that day or they got a bit in their lung

the day before and their brain is saying be careful today.

Feeding specialists vary in skills, some force the child, some are more

respectful, yet still teach the skills needed. Find one that works for you.

If that is not an option, some of the things therapists will do is start

with pudding, smooth yogurt consistency (easier to swallow than things that

are runnier) use a nuk brush (kind of like a beginning toothbrush - has

little nubbies on the end of it instead of the brush) maybe even with no

food on it to start, then touching the taste to her lips, then letting her

dip it in and play with it in her mouth. She does not get so much into her

mouth at once that she must put into a single mass that she can then

swallow.

And mostly you want her to learn that eating is pleasant. Do your very best

to make feeding a time when you are stressed and worried and trying to

force her. Have fun with her and move forward with her.

Hugs to you and I truly do celebrate the wonderful news of a green light.

Kim

>

> great news and uplifting to take away the blues of yesterday, as

> usual in chargeland the roller coaster ride of ups and

> downs....heres to the up's which we all prefer, well done to alissa.

>

> Amelie cant eat she failed her first videofluroscopy, but we were

> advised to do little tasters when she is well, so we let her taste

> lolly pops, and melted chocolate, only tiny amounts, she loves it

> and I think the idea is to keep her interested for maybe when she is

> older. So I wouldnt focus on full blown eating just introduction to

> occasional tastes and only introducing one taste at one meal rather

> than too much. a slow process but she will get there.

>

> Good luck

> Lesley x

>

>>

>> I guess with every bad day there is a better day!! We went to sick

>> kids hospital today and Alissa passed her feeding study!!

> Yepee !!! I

>> can't believe it. I'm in shock!! She is now safe to drink and eat

> by

>> mouth!! SHe still has severe reflux, not to mention she freaks out

> if

>> you put anything in her mouth so I have no idea how I'm gonna get

> past

>> this but in the mean time now she can!!

>>

>> Are there chargers out there that even though they are allowed to

> eat

>> and drink, they don't have the cordination to do that? IS that

>> possible or is it like anything else, the more you work with them

>> they'll eventually get it? THats one issue, the other is although

>> she's safe to eat I don't know if the reflux will allow her to.

> Here

>> I go on another feeding journey... help!

>>

>

> CHARGE SYNDROME LISTSERV PHOTO PAGE:

> http://www.imagestation.com/album/?id=2117043995

>

> Membership of this email support groups does not constitute membership in the

> CHARGE Syndrome Foundation or CHARGE Syndrome Canada.

> For information about the CHARGE Syndrome

> Foundation or to become a member (and get the newsletter),

> please contact marion@... or visit

> the web site at http://www.chargesyndrome.org

> (CHARGE Syndrome Canada - http://www.chargesyndrome.ca)

>

> 8th International

> CHARGE Syndrome Conference, July, 2007. Information will be available at

> www.chargesyndrome.org or by calling 1-.

>

February 23, 2006

Eva just passed her swallow study in November and she is still

learning how to take a whole bottle so some is still put threw the

tube. The one thing they need to really learn is hunger, Since we

stopped her over night feeds she is slowly learning what its like to

be hungry. She was on such a strick feeding times that she didnt

know how if felt to be hungry.

I hope Alissa keeps up the good work and congrats to you both!!!

Hugs,

Crystal and Eva (10 month charger)

>

> I guess with every bad day there is a better day!! We went to sick

> kids hospital today and Alissa passed her feeding study!!

Yepee !!! I

> can't believe it. I'm in shock!! She is now safe to drink and eat

by

> mouth!! SHe still has severe reflux, not to mention she freaks out

if

> you put anything in her mouth so I have no idea how I'm gonna get

past

> this but in the mean time now she can!!

>

> Are there chargers out there that even though they are allowed to

eat

> and drink, they don't have the cordination to do that? IS that

> possible or is it like anything else, the more you work with them

> they'll eventually get it? THats one issue, the other is although

> she's safe to eat I don't know if the reflux will allow her to.

Here

> I go on another feeding journey... help!

>

February 23, 2006

,

Don't have any experience of feeding probs but having just replied to your

earlier post (sorry, I am about 150 posts behind), glad to hear of the siver

lining on this cloud. Sure you will get lots of good advise here but just

wanted to say very good luck on the feeding issue.

Still sending more hugs from the UK

Flo

February 24, 2006

Hi there, Yes, Carmen eats all her food by mouth, but I do thicken her

thin liquids to avoid aspiration. She has never been tube fed and is

20 months old. She eats yogurt, pudding, applesauce, pastas, sausage

and hot dogs. I avoid things that crumble easily (like crackers)

because she tends to choke on those items. The more mouth stimulation

you can provide the better Alissa will coordinate her swallow. So,

things like a vibrating tooth brush or vibrating teethers. Talk Tools

is a catalog that has great ideas to help. Good luck!

Let me know if you have more questions I can help with!

>

> I guess with every bad day there is a better day!! We went to sick

> kids hospital today and Alissa passed her feeding study!! Yepee !!! I

> can't believe it. I'm in shock!! She is now safe to drink and eat by

> mouth!! SHe still has severe reflux, not to mention she freaks out if

> you put anything in her mouth so I have no idea how I'm gonna get past

> this but in the mean time now she can!!

>

> Are there chargers out there that even though they are allowed to eat

> and drink, they don't have the cordination to do that? IS that

> possible or is it like anything else, the more you work with them

> they'll eventually get it? THats one issue, the other is although

> she's safe to eat I don't know if the reflux will allow her to. Here

> I go on another feeding journey... help!

>

February 24, 2006

Hi there, Yes, Carmen eats all her food by mouth, but I do thicken her

thin liquids to avoid aspiration. She has never been tube fed and is

20 months old. She eats yogurt, pudding, applesauce, pastas, sausage

and hot dogs. I avoid things that crumble easily (like crackers)

because she tends to choke on those items. The more mouth stimulation

you can provide the better Alissa will coordinate her swallow. So,

things like a vibrating tooth brush or vibrating teethers. Talk Tools

is a catalog that has great ideas to help. Good luck!

Let me know if you have more questions I can help with!

>

> I guess with every bad day there is a better day!! We went to sick

> kids hospital today and Alissa passed her feeding study!! Yepee !!! I

> can't believe it. I'm in shock!! She is now safe to drink and eat by

> mouth!! SHe still has severe reflux, not to mention she freaks out if

> you put anything in her mouth so I have no idea how I'm gonna get past

> this but in the mean time now she can!!

>

> Are there chargers out there that even though they are allowed to eat

> and drink, they don't have the cordination to do that? IS that

> possible or is it like anything else, the more you work with them

> they'll eventually get it? THats one issue, the other is although

> she's safe to eat I don't know if the reflux will allow her to. Here

> I go on another feeding journey... help!

>

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