Re: (Fwd) fedding problems...again

[Guest guest]

We just recently started on the bolus feedings through his NG tube ( he

was on continuous before). He does not

seem to tolorate the larger amount of food very well. I'm not sure if this is

just because it is new or if this is just

the beginning of terrible reflux. He has been throwing up almost once a day

since I started the bolus feeds. When I

try to feed him by mouth he only takes about 5 cc's. (I'm not sure how to get

him interested in eating more from the

bottle--he use to take 50 cc's before he had the NG.) But through the NG he gets

90 cc's over 1 1/2 hours. (It was

originally suppose to be 120 cc's but he doesn't seem to like that much in his

tummy) The goal is to slowly increase

this so that he gets that much in 30 min. How do you know if it really is

reflux? How did you find out about the

delayed emptying of Madison's stomach?

mom to 2 mo. CHarGE and 2 yrs.

Casey wrote:

> She also has terrible reflux nad throws up almost once per day. Of course,

she

> does not eat large amounts at one time. Just an ounce here and there. But

> after that surgery she was sucking down 4 ounces at time.

> But for some reason, her stomach will not tolerate large amounts. She did

not have a Fundo done when they put in the

> g-tube because

> her esophagus was not working correctly either and the doc thought she would

> outgrow the reflux. Do those of you whose kids have had fundos reccommend

> the fundo? I wonder if she would eat more if she wasn't always feeling it

> coming back up her esophagus?Jodie

> mom to Madison -20 mos. -CHaRgE

>

>

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[Guest guest]

-

Thought I'd add my two cents about 's reflux. (18 mos) never

tolerated bolus feedings at all. As a matter of fact, even after her fundo

to control the reflux, bolus feeds were still really hard for her and she

began stressing out the fundo with her gagging and wretching. She has had

two stomach emptying studies that showed she emptied just fine. We finally

accepted that the reflux (esp from bolus feeding) was just another thing that

we couldn't explain but we could fix by putting back on continuous

feeds (18 hrs a day now.) I know that it doesn't sound like a great answer,

but it stopped 's wretching and struggling with reflux. We are slowly

weening her back in her hours, but it has been a million times better.

By the way, we got a G-Tube and Button when was five mos old. We tried

to hang in there with the ng tube, but she was pulling it out constantly and

her face was always red from tape. Hang in there. I just wanted you to know

that some of our kids still have reflux even if their stomach empties well.

Wish I knew why!

Amy - wife to mom to (2) and (18 mos) CHaRgE

[Guest guest]

>

>

> wrote:

>>How do you know if it really is reflux?

,

My husband, being a blueberry farmer and all, and I put blue food coloring

in her OG feeds way back when, that's pretty unmistakable coming up and out

the mouth and or nose. There are 2 reflux tests that they do with they

barium, one is just short and the other takes an hour. They weren't the

best tests she's had, but they definitely weren't the worst, either.

Good luck!

Mom to Kennedy 15 mos old CHARGEr, 9, 8, and wife to Graeme

New Brunswick, Canada

Visit the " Weir's homepage " at:

http://www.geocities.com/SunsetStrip/Palms/5716

ICQ #1426476

[Guest guest]

wrote:

>How do you know if it really is reflux?

Hi, :

The only way I've heard to really know " medically " is to do an upper GI -

trace radioactive material through the digestive tract from mouth to end -

and see if any comes back up. This was no fun for when she was an

infant because she actually got so mad being held down for the procedure,

she DID reflux, then she aspirated and ended up with pneumonia!

My husband and I tried another " clinical observation trick " when we thought

her Nissen had undone and we wondered if she was refluxing again. We simply

put green food coloring in her bolus feeding, and watched for it to come out

her mouth, or in her case, most likely, the nose. We used green because red

would have freaked out the home nurses - we were afraid they would think it

was blood! We tried yellow, but found that it blended right in with mucous

and gunk she was getting out her nose anyway. (She had real bad

naso-pharyngeal reflux, but not gastric. Also has very bad sinuses - same

as Mom!)

Good luck finding a way to diagnose the reflux.

Friends in CHARGE,

Marilyn Ogan

Mom of Ken (9) and (6 - CHARGE), Wife of Rick

Indianapolis, IN

oganm@...

[Guest guest]

Steffi,

It does sound like we are going thru some of the same things. All of a

sudden Aubrey went for about 2 weeks without throwing up, and then yesterday

morning she threw up again. Last week, we tried a couple things we got from

the GI clinic doctor, zantac and I forget the other drug, but we stopped them

because she got these horrific stomach aches. However, we stopped the drugs

for a week, and she is still getting the stomach aches, so I guess we will

try the drugs again.

Aubrey used to sleep during the night, but now she constantly coughs and gags

and we have to suction her (she has a trach) every hour or so. Sometimes she

goes back to sleep and sometimes not. The ENT doctor told my wife yesterday

that the refluxing that she is having is probably causing her to have more

secretions and is probably causing the coughing and gagging. I guess if the

drugs don't work, we may have to look at possibly another fundo, but I don't

have a lot of confidence in it.

Bradley

father of Aubrey (7 months) ChARgE

[Guest guest]

Cae@... wrote:

> even after her fundo

> to control the reflux, bolus feeds were still really hard for her and she

> began stressing out the fundo with her gagging and wretching.

From what a lot of you have said it sounds like the fundo isn't always the best

idea. Josh passed his swallow study

and is not aspirating and I guess that aspiration is the main concern with

reflux. Sometimes I wonder if he has

aspirated when he throws up but his lungs have always been clear. (knock on

wood) His Dr. does not seem too concerned

about the throwing up. He is still gaining weight and growing. He's almost 14

pounds and has outgrown all of his

newborn clothes.

> We finally

> Accepted that the reflux (esp from bolus feeding) was just another thing that

> we couldn't explain but we could fix by putting back on continuous

> feeds (18 hrs a day now.)

This is what the nutritionist also told me today. For some reason I thought

had to be on large bolus. I guess

not.

> We tried

> to hang in there with the ng tube, but she was pulling it out constantly and

> her face was always red from tape. Hang in there.

I am getting really frustrated with the ng tube. The other day I stuck a big

thing of tape on my face to see how it

felt. It was awful!!! It was cold and sweaty and every time I moved a muscle

the whole thing moved. I couldn't imagine

having a tube down my nose and throat at the same time. No wonder he doesn't

want to eat. Josh's tube came out and I

was ready to not put it back in. We did leave it out for about five hours to

see how he would do with it out . I

really wanted to take him up to the hospital and tell them I was not putting it

back in and they had better help me feed

him and get him to eat. I finally just had my husband put it back in cause he

was hungry and I can't stand it when my

baby is hungry. We are using the Duo Derm tape which really seems to help his

skin a lot. He is making a little

progress with eating a few more cc's. His speech therapist said that she would

not recommend Josh getting the G-tube

because she didn't think this was going to be a long term thing. It sure seems

like it's already been long term to me.

As a side note we just had tubes put in Josh's ears and they did his second

ABR. They got no response and so they

said he was severe to profound. I am new to this and I was just wondering if

other kids that are profound also had no

response on the ABR or is this unusual. Thanks!

mom to 4 mo. CHarGE and 2 yrs.

>

>

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please contact marion@....

[Guest guest]

In a message dated 28/05/99 07:44:00 GMT Daylight Time,

bryanorjenny@... writes:

<< His speech therapist said that she would not recommend Josh getting the

G-tube

because she didn't think this was going to be a long term thing. It sure

seems like it's already been long term to me. >>

,

Jack's speech therapist is all for Jack having a g-tube. She doesn't see it

as being for ever and if after a few months his eating really takes off (I

wish!!!!) then they will remove it. Jack has also had a swallow study and he

can swallow safely. He doesn't chew any of his food, he simply swallows it

over and if there is the slightest lump in it he gags and chokes. NG feeding

seems to make them so orally defensive and I know that if Jack had to have ng

feeds it would finish him off completely. He would never let anyone near his

mouth again!!

I hope you get some answers and that things start looking up for Josh soon.

Elaine mum to Elise(7yrs) & Jack(22mths)CHaRGE

Dumfries,Scotland

[Guest guest]

In a message dated 28/05/99 07:44:00 GMT Daylight Time,

bryanorjenny@... writes:

<< His speech therapist said that she would not recommend Josh getting the

G-tube

because she didn't think this was going to be a long term thing. It sure

seems like it's already been long term to me. >>

,

Jack's speech therapist is all for Jack having a g-tube. She doesn't see it

as being for ever and if after a few months his eating really takes off (I

wish!!!!) then they will remove it. Jack has also had a swallow study and he

can swallow safely. He doesn't chew any of his food, he simply swallows it

over and if there is the slightest lump in it he gags and chokes. NG feeding

seems to make them so orally defensive and I know that if Jack had to have ng

feeds it would finish him off completely. He would never let anyone near his

mouth again!!

I hope you get some answers and that things start looking up for Josh soon.

Elaine mum to Elise(7yrs) & Jack(22mths)CHaRGE

Dumfries,Scotland