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Hi Janay,

It couldn't be so simple as more tube venting required, could it? That might

at least increase

her comfort level, for now.

With the constipation, the force behind the vomiting, and the mucous,

and new formula for one week only??

If I understand correctly that she's been on new formulation for only one

week, with these

resulting symptoms, even if she tolerated it for a week, it doesn't sound

like

she is now.

Copious mucous can be a result of just 'bad' digestion, and allergy reaction

to food, but it can certainly

progress to more problems and symptoms.

And, remember the posts about Miralax. It can lead to diarrhea quickly.

So, be mindful of sufficient clear fluid (water).

in Ma. (, 21 yrs)

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Hi Everyone-

Need some suggestions please. Rasha has been vomiting nearly 2ce/day

lately. She has a GTube, no fundo, and has been taking Good Start

formula with Peptamen Jr and DuoCal all mixed 1/2 and 1/2. SHe was

ok with this blend for a week and now she is vomiting the 1st and

last feeds usually with LOTS of mucous. I'm starting to think its

that and not the food. The GI has checked her and says she fine-we

had x-rays that showed no pneumonia and the abdominal one shows

constipation. We started the Miralax after that and all has been

well. When she vomits its projectile through the nose and mouth with

LOUD rumbling deep in her gut.

Do breathing problems cause these types of reactions? What other

things can we check? I don't want to just have the fundo surgery

done if there is something else that is a cause we might be able to

fix.

Please give any suggestions I can bring up at our next appt (Tues

2/27)as I am truly tired of watching my daughter go through this.

Thanks,

Janay

Mom to Rasha(18 months old)

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I know the fundo surgery is nasty but it was the number one quality of life

changing surgery for Kennedy and is still intact after almost 9 years. If

it comes down to it, it may be very successful for Rasha - I hope she gets

some relief soon - reflux is AWFUL.

Hugs to you & Rasha,

www.chargesyndrome.info

>

> Hi Everyone-

>

> Need some suggestions please. Rasha has been vomiting nearly 2ce/day

> lately. She has a GTube, no fundo, and has been taking Good Start

> formula with Peptamen Jr and DuoCal all mixed 1/2 and 1/2. SHe was

> ok with this blend for a week and now she is vomiting the 1st and

> last feeds usually with LOTS of mucous. I'm starting to think its

> that and not the food. The GI has checked her and says she fine-we

> had x-rays that showed no pneumonia and the abdominal one shows

> constipation. We started the Miralax after that and all has been

> well. When she vomits its projectile through the nose and mouth with

> LOUD rumbling deep in her gut.

>

> Do breathing problems cause these types of reactions? What other

> things can we check? I don't want to just have the fundo surgery

> done if there is something else that is a cause we might be able to

> fix.

>

> Please give any suggestions I can bring up at our next appt (Tues

> 2/27)as I am truly tired of watching my daughter go through this.

>

> Thanks,

>

> Janay

> Mom to Rasha(18 months old)

>

>

>

--

" It is far better to grasp the universe as it really is than to persist in

delusion, however satisfying and reassuring. " --Carl Sagan

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my son cole has feeding issue as well , i do not know what to tell you but

cole's fundo still allows him to vomit( we have losts of mucous but only when he

is sick) when he has bad mucus we will give him water through his g-tube and

then but on a bigger tube to allow him to push the mucous through the tube

before he feeds. it seem ti help especally in the morings

raymon

son cole 2 w charge

jkhayes95 wrote:

Hi Everyone-

Need some suggestions please. Rasha has been vomiting nearly 2ce/day

lately. She has a GTube, no fundo, and has been taking Good Start

formula with Peptamen Jr and DuoCal all mixed 1/2 and 1/2. SHe was

ok with this blend for a week and now she is vomiting the 1st and

last feeds usually with LOTS of mucous. I'm starting to think its

that and not the food. The GI has checked her and says she fine-we

had x-rays that showed no pneumonia and the abdominal one shows

constipation. We started the Miralax after that and all has been

well. When she vomits its projectile through the nose and mouth with

LOUD rumbling deep in her gut.

Do breathing problems cause these types of reactions? What other

things can we check? I don't want to just have the fundo surgery

done if there is something else that is a cause we might be able to

fix.

Please give any suggestions I can bring up at our next appt (Tues

2/27)as I am truly tired of watching my daughter go through this.

Thanks,

Janay

Mom to Rasha(18 months old)

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Dear Janay- I am so sorry - and I hope Rasha feels much better soon. Is Rasha

having any congestion or teething? Both those complications would set off

his feeds at this age. We noticed that when we would feed by gravity, when we

connected the tubing and syringe, often times the mucous would actually bubble

up into the syringe. Because we tube fed - we did not consult the

common-sense-o-meter that children have to not eat when they don't feel

well..... however, in the pursuit of seeing how much we could still accommodate

his feedings, we did find one way we snuck around the mucous was to bolus him

clear water about 30 minutes before the food. That seemed to help the mucous

move through his system and clear the way for the meal. But sometimes, he

just couldn't tolerate it, and I would just bolus him water regularly, then move

to regular concentrated formula and inch my way back to his normal blended diet.

I hope you either get answers or a cessation of symptoms soon!

love,

yuka

Vomiting issues

Hi Everyone-

Need some suggestions please. Rasha has been vomiting nearly 2ce/day

lately. She has a GTube, no fundo, and has been taking Good Start

formula with Peptamen Jr and DuoCal all mixed 1/2 and 1/2. SHe was

ok with this blend for a week and now she is vomiting the 1st and

last feeds usually with LOTS of mucous. I'm starting to think its

that and not the food. The GI has checked her and says she fine-we

had x-rays that showed no pneumonia and the abdominal one shows

constipation. We started the Miralax after that and all has been

well. When she vomits its projectile through the nose and mouth with

LOUD rumbling deep in her gut.

Do breathing problems cause these types of reactions? What other

things can we check? I don't want to just have the fundo surgery

done if there is something else that is a cause we might be able to

fix.

Please give any suggestions I can bring up at our next appt (Tues

2/27)as I am truly tired of watching my daughter go through this.

Thanks,

Janay

Mom to Rasha(18 months old)

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Hi Janay,

We had the same problem with (although she had a fundo and

can't vomit, but she would retch and I would have to vent her tube to

get the formula out), it also happened at the time of changing her

formula and it boiled down to a big change too quickly for her, I had

to water down her formula and increase the scoops slowly so that her

body got used to it. Try to put extra water in her formula to water

it down for a few days, give her system a rest (I know she probably

really needs the nutrients and calories, but it will pay off in the

end). Then increase your scoop of formula by one each day until she

is up to regular strength.

good luck

Australia

>

> Hi Everyone-

>

> Need some suggestions please. Rasha has been vomiting nearly

2ce/day

> lately. She has a GTube, no fundo, and has been taking Good Start

> formula with Peptamen Jr and DuoCal all mixed 1/2 and 1/2. SHe was

> ok with this blend for a week and now she is vomiting the 1st and

> last feeds usually with LOTS of mucous. I'm starting to think its

> that and not the food. The GI has checked her and says she fine-we

> had x-rays that showed no pneumonia and the abdominal one shows

> constipation. We started the Miralax after that and all has been

> well. When she vomits its projectile through the nose and mouth

with

> LOUD rumbling deep in her gut.

>

> Do breathing problems cause these types of reactions? What other

> things can we check? I don't want to just have the fundo surgery

> done if there is something else that is a cause we might be able to

> fix.

>

> Please give any suggestions I can bring up at our next appt (Tues

> 2/27)as I am truly tired of watching my daughter go through this.

>

> Thanks,

>

> Janay

> Mom to Rasha(18 months old)

>

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is she on any heart meds? that made our son mathew vomit alot. stacey

Re: Vomiting issues

Hi Janay,

We had the same problem with (although she had a fundo and

can't vomit, but she would retch and I would have to vent her tube to

get the formula out), it also happened at the time of changing her

formula and it boiled down to a big change too quickly for her, I had

to water down her formula and increase the scoops slowly so that her

body got used to it. Try to put extra water in her formula to water

it down for a few days, give her system a rest (I know she probably

really needs the nutrients and calories, but it will pay off in the

end). Then increase your scoop of formula by one each day until she

is up to regular strength.

good luck

Australia

>

> Hi Everyone-

>

> Need some suggestions please. Rasha has been vomiting nearly

2ce/day

> lately. She has a GTube, no fundo, and has been taking Good Start

> formula with Peptamen Jr and DuoCal all mixed 1/2 and 1/2. SHe was

> ok with this blend for a week and now she is vomiting the 1st and

> last feeds usually with LOTS of mucous. I'm starting to think its

> that and not the food. The GI has checked her and says she fine-we

> had x-rays that showed no pneumonia and the abdominal one shows

> constipation. We started the Miralax after that and all has been

> well. When she vomits its projectile through the nose and mouth

with

> LOUD rumbling deep in her gut.

>

> Do breathing problems cause these types of reactions? What other

> things can we check? I don't want to just have the fundo surgery

> done if there is something else that is a cause we might be able to

> fix.

>

> Please give any suggestions I can bring up at our next appt (Tues

> 2/27)as I am truly tired of watching my daughter go through this.

>

> Thanks,

>

> Janay

> Mom to Rasha(18 months old)

>

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Hi , and welcome.

Your timely arrival shows just how relevant each of us has the potential to

be. ;-)

--

And I'll add that , as well, was on day and overnight feeds (g-tube)

for at least

her first four years.

in Ma. (, 21 yrs)

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Has she had a swallow study done? Has she ever been diagnosed with reflux?

The Nissen fundoplication saved our son JD's life and has allowed him to

flourish. One thing though if a fundoplication is done it doesnt mean that the

child will not spit up or vomit. We just went through a period like this with

JD where he would spit up, wretch and vomit after feeds. We thought his Nissen

had failed but when we did an upper GI we found it to be intact. We got a GI

doctor involved immediately and his findings were intriguing. We found that

JD's switch to Pediasure was not the problem but that most formulas like

Pediasure, Peptamen Jr etc have a very high carbohydrate content and can illicit

a response called dumping syndrome where the body is not ready to handle a

content with carbs like that so what was done was to add more fat content, and

protein to his Pediasure. If a child has dumping syndrome some responses you

notice are watery stools, higher heart rate after feeds, wretching to the point

of vomiting, sweating etc. Most of JD's spitting up and vomiting was also real

mucous like. What happens is because the stomach dumps this higher carb into

the intestines you have an immediate spike in insulin levels in the blood and

then a dropping of blood sugar levels or a hypoglycemic response. Some infants

cannot handle this and the result is spitting up or vomiting. The change in his

food concentration has made a world of difference with JD as he doesnt even

wretch at all anymore and is tolerating all of his feeds and has been able to

receive his bolus feeds over 30 minutes and we are fixing to move him to 15

minutes. He is currently receiving 130 cc's with a 40 cc flush.

This may not be your problem. But I would check with a GI doctor. Other

physicians only could tell us that it was the pediasure and we needed to switch

to Peptamen Jr (which is very expensive) (our insurance doesnt pay for his

feeds). And we also got the old the Nissen has failed and needs to be redone

response. Reflux is a bad thing to deal with and I would get the opinion of a

GI guy. JD's is considered one of the best in Dallas.

Just my two cents and like I said it may not be your problem.

, , Olivia (17 months) and JD (cHArgEd 17 months)

Vomiting issues

Hi Everyone-

Need some suggestions please. Rasha has been vomiting nearly 2ce/day

lately. She has a GTube, no fundo, and has been taking Good Start

formula with Peptamen Jr and DuoCal all mixed 1/2 and 1/2. SHe was

ok with this blend for a week and now she is vomiting the 1st and

last feeds usually with LOTS of mucous. I'm starting to think its

that and not the food. The GI has checked her and says she fine-we

had x-rays that showed no pneumonia and the abdominal one shows

constipation. We started the Miralax after that and all has been

well. When she vomits its projectile through the nose and mouth with

LOUD rumbling deep in her gut.

Do breathing problems cause these types of reactions? What other

things can we check? I don't want to just have the fundo surgery

done if there is something else that is a cause we might be able to

fix.

Please give any suggestions I can bring up at our next appt (Tues

2/27)as I am truly tired of watching my daughter go through this.

Thanks,

Janay

Mom to Rasha(18 months old)

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tools, free access to millions of high-quality videos from across the web, free

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Thanks everybody! I knew you guys would come through! I am at the

point now where I'm even scared to feed her. To give some background

info I may have left out-she is on Reglan and we just switched to

Prevacid from Zantac (and we got a suspension made of the Prevacid.)

She does have reflux but from the last few upper GI studies it is

minimal and what they saw went back down. Swallow study shows no

aspiration. Even when she vomits she pushes up to get her face away.

She ws vomiting prior to the switch of everything just not as often

and nowhere near as forcefully. The sounds coming from her gut are

like turning a 5 gallon water bottle onto the cooler.

Believe it or not, I've never vented her tube and the GI has never

asked nor told me to. She is very mucousy but it only starts running

after the first feed of the day. She coughs and sneezes like an old

man all throughout the day. She is not on any heart meds. The

dumping is something I wondered about when I read that post about JD

a few weeks back. Rasha's complication to adding protein is that her

kidney function is declining and I'm afraid to increase her protein

although neprh doc still estimates function at 80%.

Her OT suggested today the water 30 min prior. I'll try that with

the bolus tubing and see what I get back. I'm trying to get her

calories up because she is holding steady at 18lbs +/- (8.5 kg) and

28 " tall for the last 4-5 months. I feel like I'm starving the poor

girl.

Janay

>

> Has she had a swallow study done? Has she ever been diagnosed

with reflux?

>

> The Nissen fundoplication saved our son JD's life and has allowed

him to flourish. One thing though if a fundoplication is done it

doesnt mean that the child will not spit up or vomit. We just went

through a period like this with JD where he would spit up, wretch

and vomit after feeds. We thought his Nissen had failed but when we

did an upper GI we found it to be intact. We got a GI doctor

involved immediately and his findings were intriguing. We found

that JD's switch to Pediasure was not the problem but that most

formulas like Pediasure, Peptamen Jr etc have a very high

carbohydrate content and can illicit a response called dumping

syndrome where the body is not ready to handle a content with carbs

like that so what was done was to add more fat content, and protein

to his Pediasure. If a child has dumping syndrome some responses

you notice are watery stools, higher heart rate after feeds,

wretching to the point of vomiting, sweating etc. Most of JD's

spitting up and vomiting was also real mucous like. What happens

is because the stomach dumps this higher carb into the intestines

you have an immediate spike in insulin levels in the blood and then

a dropping of blood sugar levels or a hypoglycemic response. Some

infants cannot handle this and the result is spitting up or

vomiting. The change in his food concentration has made a world of

difference with JD as he doesnt even wretch at all anymore and is

tolerating all of his feeds and has been able to receive his bolus

feeds over 30 minutes and we are fixing to move him to 15 minutes.

He is currently receiving 130 cc's with a 40 cc flush.

>

> This may not be your problem. But I would check with a GI

doctor. Other physicians only could tell us that it was the

pediasure and we needed to switch to Peptamen Jr (which is very

expensive) (our insurance doesnt pay for his feeds). And we also

got the old the Nissen has failed and needs to be redone response.

Reflux is a bad thing to deal with and I would get the opinion of a

GI guy. JD's is considered one of the best in Dallas.

> Just my two cents and like I said it may not be your problem.

>

> , , Olivia (17 months) and JD (cHArgEd 17 months)

>

> Vomiting issues

>

>

> Hi Everyone-

>

> Need some suggestions please. Rasha has been vomiting nearly

2ce/day

> lately. She has a GTube, no fundo, and has been taking Good Start

> formula with Peptamen Jr and DuoCal all mixed 1/2 and 1/2. SHe was

> ok with this blend for a week and now she is vomiting the 1st and

> last feeds usually with LOTS of mucous. I'm starting to think its

> that and not the food. The GI has checked her and says she fine-we

> had x-rays that showed no pneumonia and the abdominal one shows

> constipation. We started the Miralax after that and all has been

> well. When she vomits its projectile through the nose and mouth

with

> LOUD rumbling deep in her gut.

>

> Do breathing problems cause these types of reactions? What other

> things can we check? I don't want to just have the fundo surgery

> done if there is something else that is a cause we might be able

to

> fix.

>

> Please give any suggestions I can bring up at our next appt (Tues

> 2/27)as I am truly tired of watching my daughter go through this.

>

> Thanks,

>

> Janay

> Mom to Rasha(18 months old)

>

>

>

>

_____________________________________________________________________

___

> Check out the new AOL. Most comprehensive set of free safety and

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>

>

>

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Janay-

Sorry to hear of this latest obstacle. Geesh. Has she been checked

recently for a cold? It'd be a shame to be worrying yourself through this

if it's just a simple cold that is being complicated by the feeding. You

know how milk can make you mucousy?

If you have been using this formula for a week, how about switching back to

whatever was working before just to see if that solves the problem? Then

you'd know that the new formula is the culprit. If you find that she's good

on the old regime, then I'd add one of those 3 ingredients at a time. Hard

to say if it's the Good Start, the Peptamen Jr or the DuoCal - if they are

all new to her. See what I'm getting at? Maybe you've already considered

this. I have read all the replies so quickly that I may have missed

something important.

I see another reply addressed the constipation thing. Aubrie could get

pukey with constipation. And I remember her puking when she was needing to

go - like when the bottom part of the system was stimulated, the whole

system got in an uproar.

Prilosec was the lifesaver med for her reflux. She didn't have a fundo

either. Meds have changed a lot in 8 yrs though.

.. Oh - when you changed the feeds last week, did you increase volume as

well? The smallest increase would be a huge thing to Aubrie back in the

day. Just because she handled it the first week, doesn't mean anything if

something has come up this week - like a cold - to complicate matters.

Good luck. I hope Rasha is feeling better soon.

Michele__

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I have a daughter with CHARGE who will be 4 this April. It seems that we have

been dealing with vomitting all of her life. Different things have helped to

make a bit of difference but I think a lot of it is due to her getting older.

When she was younger, switching her from powdered formula to liquid (didn't

matter what brand or type) made a world of difference. Before switching she

would scream and cry the entire time (about 1-2 hours) and then vomit everything

back up. I cannot even begin to describe the stress level in our house at that

time. After some time and many different foods she ended up on Nutren Junior

with Fiber. It has added fiber b\c we noticed that when she would get " backed

up " she would gag more. Miralax didn't seem to work for her. For her, reflux

medication did nothing to eliminate the gagging and wretching. Although the

doctors said that it would still help with any burning from reflux. Now she did

get a Nissen at 6 months but at some point it came undone. This past fall she

had it fixed. Things are great now in the sense that when she gags she doesn't

vomit she just might hawk up some spit and mucous. This has eliminated our

stress load greatly b/c before she would lose so much weight with every episode.

Now we can keep food in her which is wonderful and we can take her places even

though she doesn't feel good b/c I know she won't vomit all over the place. We

eventually started hooking her up to the pump at night so that we didn't have to

feed her so much with each feeding. This was great b/c we could start getting

more in her b/c she basically ate 24 hours a day without being hooked up to the

pump during the day. Now after some point, maybe 1-2 years ago her vomiting

started spacing out a bit and developed a sort of pattern to it i.e. she would

have an episode every month or two. She would feel awful for 5-7 days sleeping

all the time, cranky, sensitive to light, etc. We looked into Cyclic Vomitting

Syndrome (CVS) and abdominal migraines and she finally got diagnosed last week

with CVS. So we finally have a diagnosis which is so exciting b/c now we can

work towards treating it. She too had the gurgling sounds. After having her

Nissen fixed this past fall and about a month afterwards we think she did

develop Dumping Syndrome. But by dropping her feeds during the day in quantity

and uping the quantity at night it instantly went away and so now we are trying

to inch them back up again. Sorry that this is so long but we have had years of

dealing with this. So here is my summary....

1. Switch to liquid food vs powdered.

2. Look into Nutren Junior with Fiber (b/c of the added fiber) to aid with

constipation.

3. Does the vomitting have a pattern to it (i.e. every so many days). Then look

into abdominal migraines and cyclic vomitting syndrome (CVS)

4. Does your child go to sleep almost instantly, have pain, sweat, etc. Then

look into dumping syndrome.

5. With all of the above, considered hooking your child up to a pump at night.

It really made a world of difference for us b/c we didn't have to give her so

much at each feeding. She actually had a growth spurt from doing this.

Again I apologize for the length. I just signed up to this listserve last night

so this is very new to me. Hope this helps. If you have any more questions don't

hesitate to ask. And again time makes a big difference as well.

Vomiting issues

>

>

> Hi Everyone-

>

> Need some suggestions please. Rasha has been vomiting nearly

2ce/day

> lately. She has a GTube, no fundo, and has been taking Good Start

> formula with Peptamen Jr and DuoCal all mixed 1/2 and 1/2. SHe was

> ok with this blend for a week and now she is vomiting the 1st and

> last feeds usually with LOTS of mucous. I'm starting to think its

> that and not the food. The GI has checked her and says she fine-we

> had x-rays that showed no pneumonia and the abdominal one shows

> constipation. We started the Miralax after that and all has been

> well. When she vomits its projectile through the nose and mouth

with

> LOUD rumbling deep in her gut.

>

> Do breathing problems cause these types of reactions? What other

> things can we check? I don't want to just have the fundo surgery

> done if there is something else that is a cause we might be able

to

> fix.

>

> Please give any suggestions I can bring up at our next appt (Tues

> 2/27)as I am truly tired of watching my daughter go through this.

>

> Thanks,

>

> Janay

> Mom to Rasha(18 months old)

>

>

>

>

__________________________________________________________

___

> Check out the new AOL. Most comprehensive set of free safety and

security tools, free access to millions of high-quality videos from

across the web, free AOL Mail and more.

>

>

>

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Thanks Michele. She was vomiting on and off prior to switching

anything. I thought the constipation was the problem then. She would

be ok for a few days-maybe even a week then we'd start the vomiting.

Once a day for a day or two then big poop and back to normal. After

that, it didn't get back to normal and Saudi slowed her feeds to the

point it was taking nearly 2.5 hours to feed her but she wasn't

puking. That continuous feed situation is not good. Really limited

her mobility-if I didn't mention she's quite a speed demon in the

walker nowadays. (Learned how to video clip with my camera if

anyone's interested in checking it out :-))So anyway, we did a day

at the hospital 2 weeks ago with labs and x-rays and her bicarb was

low (personally think sample was hemolyzed but that's a different

story)and we did a bag of IV fluids in ER and went home. She was

good for another week-week and a half- now this. I did put the pump

back to a 55 minute feed and did not increase her volume. When I

mixed everything together I was able to cut out the 5th feed for the

day and keep it 245cc per feed.

GI doc's nurse called back at 5:45pm and said to increase Reglan

to .9mL/5 times per day.

Janay

>

> Janay-

>

> Sorry to hear of this latest obstacle. Geesh. Has she been

checked

> recently for a cold? It'd be a shame to be worrying yourself

through this

> if it's just a simple cold that is being complicated by the

feeding. You

> know how milk can make you mucousy?

>

>

>

> If you have been using this formula for a week, how about

switching back to

> whatever was working before just to see if that solves the

problem? Then

> you'd know that the new formula is the culprit. If you find that

she's good

> on the old regime, then I'd add one of those 3 ingredients at a

time. Hard

> to say if it's the Good Start, the Peptamen Jr or the DuoCal - if

they are

> all new to her. See what I'm getting at? Maybe you've already

considered

> this. I have read all the replies so quickly that I may have

missed

> something important.

>

>

>

> I see another reply addressed the constipation thing. Aubrie

could get

> pukey with constipation. And I remember her puking when she was

needing to

> go - like when the bottom part of the system was stimulated, the

whole

> system got in an uproar.

>

>

>

> Prilosec was the lifesaver med for her reflux. She didn't have a

fundo

> either. Meds have changed a lot in 8 yrs though.

>

>

>

> . Oh - when you changed the feeds last week, did you increase

volume as

> well? The smallest increase would be a huge thing to Aubrie back

in the

> day. Just because she handled it the first week, doesn't mean

anything if

> something has come up this week - like a cold - to complicate

matters.

>

>

>

> Good luck. I hope Rasha is feeling better soon.

>

>

>

> Michele__

>

>

>

>

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-nice to meet you! Thank you for the detailed reply-don't

apologize for the length! You hit the nail on the head with the

stress-level comment. That's part of the reason I'm hesitant to feed

throughout the night-I'm scared I won't hear her throwing up or the

tubing will come undone and I'll have fed the bed (again).

She doesn't seem to feel bad. Even the first wave of vomit comes

with no warning-it just flies out. It's the 2nd-5th waves that get

loud and she starts freaking out. After a few minutes of hand

flapping she's back to her normal, smiling and playful self. I can

pick her up and put her in the walker and she'll walk around for

hours if I let her.

Thanks for the suggestions. I'll check them out!

Welcome to the group!

Janay

> >

> > Has she had a swallow study done? Has she ever been diagnosed

> with reflux?

> >

> > The Nissen fundoplication saved our son JD's life and has

allowed

> him to flourish. One thing though if a fundoplication is done it

> doesnt mean that the child will not spit up or vomit. We just

went

> through a period like this with JD where he would spit up,

wretch

> and vomit after feeds. We thought his Nissen had failed but when

we

> did an upper GI we found it to be intact. We got a GI doctor

> involved immediately and his findings were intriguing. We found

> that JD's switch to Pediasure was not the problem but that most

> formulas like Pediasure, Peptamen Jr etc have a very high

> carbohydrate content and can illicit a response called dumping

> syndrome where the body is not ready to handle a content with

carbs

> like that so what was done was to add more fat content, and

protein

> to his Pediasure. If a child has dumping syndrome some responses

> you notice are watery stools, higher heart rate after feeds,

> wretching to the point of vomiting, sweating etc. Most of JD's

> spitting up and vomiting was also real mucous like. What happens

> is because the stomach dumps this higher carb into the

intestines

> you have an immediate spike in insulin levels in the blood and

then

> a dropping of blood sugar levels or a hypoglycemic response.

Some

> infants cannot handle this and the result is spitting up or

> vomiting. The change in his food concentration has made a world

of

> difference with JD as he doesnt even wretch at all anymore and

is

> tolerating all of his feeds and has been able to receive his

bolus

> feeds over 30 minutes and we are fixing to move him to 15

minutes.

> He is currently receiving 130 cc's with a 40 cc flush.

> >

> > This may not be your problem. But I would check with a GI

> doctor. Other physicians only could tell us that it was the

> pediasure and we needed to switch to Peptamen Jr (which is very

> expensive) (our insurance doesnt pay for his feeds). And we also

> got the old the Nissen has failed and needs to be redone

response.

> Reflux is a bad thing to deal with and I would get the opinion

of a

> GI guy. JD's is considered one of the best in Dallas.

> > Just my two cents and like I said it may not be your problem.

> >

> > , , Olivia (17 months) and JD (cHArgEd 17 months)

> >

> > Vomiting issues

> >

> >

> > Hi Everyone-

> >

> > Need some suggestions please. Rasha has been vomiting nearly

> 2ce/day

> > lately. She has a GTube, no fundo, and has been taking Good

Start

> > formula with Peptamen Jr and DuoCal all mixed 1/2 and 1/2. SHe

was

> > ok with this blend for a week and now she is vomiting the 1st

and

> > last feeds usually with LOTS of mucous. I'm starting to think

its

> > that and not the food. The GI has checked her and says she

fine-we

> > had x-rays that showed no pneumonia and the abdominal one

shows

> > constipation. We started the Miralax after that and all has

been

> > well. When she vomits its projectile through the nose and

mouth

> with

> > LOUD rumbling deep in her gut.

> >

> > Do breathing problems cause these types of reactions? What

other

> > things can we check? I don't want to just have the fundo

surgery

> > done if there is something else that is a cause we might be

able

> to

> > fix.

> >

> > Please give any suggestions I can bring up at our next appt

(Tues

> > 2/27)as I am truly tired of watching my daughter go through

this.

> >

> > Thanks,

> >

> > Janay

> > Mom to Rasha(18 months old)

> >

> >

> >

> >

> __________________________________________________________

> ___

> > Check out the new AOL. Most comprehensive set of free safety

and

> security tools, free access to millions of high-quality videos

from

> across the web, free AOL Mail and more.

> >

> >

> >

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Janay-

I remember how complicated it seemed to try to figure out the right balance

of meds, calories, rate, blah, blah. And we didn't do the tube feedings as

long as you have been. I know you'll figure it out. But I'm sorry it has

to be such a challenge.

Michele W

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Thanks Michele. I appreciate the " hug " .

jkhm

>

> Janay-

>

> I remember how complicated it seemed to try to figure out the

right balance

> of meds, calories, rate, blah, blah. And we didn't do the tube

feedings as

> long as you have been. I know you'll figure it out. But I'm

sorry it has

> to be such a challenge.

>

>

>

> Michele W

>

>

>

>

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janay ashly gave the best description of cvs which i have to and i was going

to say that to so she stole it form me LOL

>

> Thanks Michele. I appreciate the " hug " .

>

> jkhm

>

>

> >

> > Janay-

> >

> > I remember how complicated it seemed to try to figure out the

> right balance

> > of meds, calories, rate, blah, blah. And we didn't do the tube

> feedings as

> > long as you have been. I know you'll figure it out. But I'm

> sorry it has

> > to be such a challenge.

> >

> >

> >

> > Michele W

> >

> >

> >

> >

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That's cute. Something to add about 's CVS is that there are many

things that can make it flare up (i.e. stress, certain food which obviously

isn't much of an issue for us, changes in weather, etc.). But the main one for

us is a cold. She is almost guaranteed to have an episode with every cold. It is

so annoying b/c I just wish that she could have a normal cold like everyone

else. Her CVS episodes last at least 5 days and yes she is out of school that

entire time and then she will have another one about 3-4 weeks later. I joke

that she is having her " time of the month " b/c it happens about once a month. In

between episodes she has no gagging or discomfort whatsoever. We have some

medicine to try but we haven't started it yet. So we shall see if it helps.

As for hooking her up at night. We were so worried and not to mention we were

starting it right before the birth of our second child. So it was quite

stressful. But she actually did great with it. She doesn't really move around

that much at night or at least she is better now that she is in her big girl

bed. When she was in one piece pajamas, we would run it down her pant let and

out by her feet. Now that she is in 2 piece pajamas we just hook it up to her. I

think only once she got it wrapped around her. But the tubing has that extra

piece that hooks onto her tube to help prevent it from coming undone in the

middle of the night. Now I cannot say that we haven't had any problems. A couple

of times the medicine port has come open and her bed gets soaked. We have

problems occasionally with her pump and the flow getting off. But to have been

on it for a little over a year our problems have been minimal.And the benefit

has been well worth it. We were prior to this trying to feed her 7 to 7 1/2

ounces 5 times a day which was awful b/c it was too much for her to take in at

once. We had the option of her wearing the pump during the day but she refused

to wear it. I believe she was 2 1/2 at the time so you can imagine the tantrums.

But now we just feed her 3 1/2 to 4 ounces 3 times a day. And then she gets a

little over 2 ounces per hour at night. It has really been a blessing for us. I

think that if we hadn't done this my husband and I would have gotten divorced

b/c we were so stressed out with the situation. It was awful but now things are

so much better!!!

Re: Re: Vomiting issues

janay ashly gave the best description of cvs which i have to and i was going

to say that to so she stole it form me LOL

>

> Thanks Michele. I appreciate the " hug " .

>

> jkhm

>

>

> >

> > Janay-

> >

> > I remember how complicated it seemed to try to figure out the

> right balance

> > of meds, calories, rate, blah, blah. And we didn't do the tube

> feedings as

> > long as you have been. I know you'll figure it out. But I'm

> sorry it has

> > to be such a challenge.

> >

> >

> >

> > Michele W

> >

> >

> >

> >

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maybe it is the duocal.

> >

> > Hi Everyone-

> >

> > Need some suggestions please. Rasha has been vomiting nearly

> 2ce/day

> > lately. She has a GTube, no fundo, and has been taking Good

Start

> > formula with Peptamen Jr and DuoCal all mixed 1/2 and 1/2. SHe

was

> > ok with this blend for a week and now she is vomiting the 1st

and

> > last feeds usually with LOTS of mucous. I'm starting to think

its

> > that and not the food. The GI has checked her and says she fine-

we

> > had x-rays that showed no pneumonia and the abdominal one shows

> > constipation. We started the Miralax after that and all has been

> > well. When she vomits its projectile through the nose and mouth

> with

> > LOUD rumbling deep in her gut.

> >

> > Do breathing problems cause these types of reactions? What other

> > things can we check? I don't want to just have the fundo surgery

> > done if there is something else that is a cause we might be able

to

> > fix.

> >

> > Please give any suggestions I can bring up at our next appt

(Tues

> > 2/27)as I am truly tired of watching my daughter go through this.

> >

> > Thanks,

> >

> > Janay

> > Mom to Rasha(18 months old)

> >

>

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With all the talk about vomiting I had to send this out again......sorry!

Lori Myers

Spouse - Trent, Children - (9), (6, CHARGE Syndrome, Congenital

Heart Defects/TOF Pulmonary Atresia/repaired, ECMO 12 days, Bi-lateral

Choanal Atresia, Decanullated Trach, G-button, partial hearing loss, walking

as of 12/22/04!, and Emma (4).

Dallas, Texas

Here's my experience with vomiting and migraines. I cut and paste this

from a message I sent to someone else.

My daughter is tube fed and when she was about 1 1/2 - 2 years old she was

diagnosed with cyclical vomiting and migraines by a neurologist. She was

put on the medication imipramine and within 27 days the vomiting and

retching stopped. She gets " sensitive " and vomits when she has an ailment

but for the most part this medication controls the vomiting. It was a

neurological problem not a GI problem. It was very difficult to fight theGI

battle but the neurologist made all the difference in the world. The neuro

examined but I think the diagnosis was based on my report of her

symptoms. would wake up at 6:30 every morning retching and/or

vomiting. It didn't matter if I had fed her overnight or not and it didn't

matter what I fed her. I was even giving her liquid phenergan (anti-nausea)

and she was still retching and/or vomiting. She also had vomiting

cycles....day 1 - no vomiting then she would work her way up to constant

vomiting by day 7 - 10. Then she would have a day of two with no vomiting

and then by day 7 or so she couldn't even hold down a teaspoon of water. It

was awful! I was changing her foods and meds with the direction of a

wonderful GI doctor but nothing would change the cycle. The phenergan

(liquid and suppository) would help but on the bad days she would vomit on

the phenergan. She had an upper GI during one of the really bad days and of

course they said she had major reflux....she was vomiting! After several

weeks I finally noticed the pattern, decided that it had to be brain related

and not stomach related....it just didn't make sense that it could be GI

problem, also, food and GI meds didn't have any effect on the vomiting, only

the phenergan helped and that works on the brain, not the stomach.

The neuro diagnosed her with cyclical vomiting and migraines. The neuro

said there were two possibilities - one was the brain fluid which can be

shown via a MRI or CT scan. The other was migraines, also called

abdominal migraines. The only way to know if that is the problem is that

the migraine meds work, and they usually take two to four weeks to work.

With , it was 27 agonizing days. You can also take them off the meds

and see if the problem comes back then you know the meds are working--but

there is no way I'm going to do that! The way the neuro explained it is

that the nausea center of the brain is near the headache center and that is

why you can get nausea and vomiting with migraines. The meds work on the

brain chemicals. He also said that he sees this problem more in children

with " syndromes. " I'm not sure had headaches but she was very light

sensitive. She would also look at her hand (and still does) when she is in

pain. During her bad days she was looking at her hands constantly. I don't

think the headaches have to exist for it to be a migraine problem. I've

also heard other people talk about treating abdominal migraines with Motrin

and if they can catch it early it helps.

I fought for years with our doctors (ones I have a lot of respect for and

value tremendously) because they all said she had reflux and I didn't feel

that that was the problem....I was right. Fight the battle if you have to.

Chart the symptoms and look for trends - and even the subtle things can tell

you things. I thought I was crazy - and so did everyone else. The migraine

med has changed our lives and I shudder to think what could have been. I

think it is worth investigating and push until you are comfortable and can

get some answers.

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Thanks to everyone who offered their knowledge and

thank you Janay for posing the question. I, too, am

trying to figure out why Vinny wretches, though he

doesn't vomit due to the glorious fundoplication.

Janay, how many calories does Rasha get per day? Has

the increased protein worked (though I know you have

to be careful with that due to Rasha's kidney issues)?

Have you decided to start the continuous feeds at

night?

I am pretty terrified to do continuous feeds at night.

Aside from feeding the bed (yes, I have done that

too!), I am afraid that Vinny will start gagging and I

won't hear it. I am also afraid he will twist himself

up in the tubing and pull out his mic-key button. (He

already twists it around while looking at me saying

" Ah ah ah! " and smiling, of course, that mischievous

grin!)

Vinny gets 900-1000 calories per day and he hasn't

gained more than a few ounces since September.

If anyone has suggestions, I'd be so open to them, as

always!

One last note, Vinny had an ENT appointment today and

his tube in his left ear needs to be replaced.

Shucks... we were going for NO ANESTHESIAS in 2007.

It is not scheduled until the end of March, at which

point he will also have an MRI of his heart to try to

find that darn left subclavian artery...

ina, mom to Luca (3.5) & Vinny (1.5 w/ cHARgE)

--- jkhayes95 wrote:

> -nice to meet you! Thank you for the detailed

> reply-don't

> apologize for the length! You hit the nail on the

> head with the

> stress-level comment. That's part of the reason I'm

> hesitant to feed

> throughout the night-I'm scared I won't hear her

> throwing up or the

> tubing will come undone and I'll have fed the bed

> (again).

>

> She doesn't seem to feel bad. Even the first wave of

> vomit comes

> with no warning-it just flies out. It's the 2nd-5th

> waves that get

> loud and she starts freaking out. After a few

> minutes of hand

> flapping she's back to her normal, smiling and

> playful self. I can

> pick her up and put her in the walker and she'll

> walk around for

> hours if I let her.

>

> Thanks for the suggestions. I'll check them out!

>

> Welcome to the group!

>

> Janay

>

>

> >

> > I have a daughter with CHARGE who will be 4 this

> April. It seems

> that we have been dealing with vomitting all of her

> life. Different

> things have helped to make a bit of difference but I

> think a lot of

> it is due to her getting older. When she was

> younger, switching her

> from powdered formula to liquid (didn't matter what

> brand or type)

> made a world of difference. Before switching she

> would scream and

> cry the entire time (about 1-2 hours) and then vomit

> everything back

> up. I cannot even begin to describe the stress level

> in our house at

> that time. After some time and many different foods

> she ended up on

> Nutren Junior with Fiber. It has added fiber b\c we

> noticed that

> when she would get " backed up " she would gag more.

> Miralax didn't

> seem to work for her. For her, reflux medication did

> nothing to

> eliminate the gagging and wretching. Although the

> doctors said that

> it would still help with any burning from reflux.

> Now she did get a

> Nissen at 6 months but at some point it came undone.

> This past fall

> she had it fixed. Things are great now in the sense

> that when she

> gags she doesn't vomit she just might hawk up some

> spit and mucous.

> This has eliminated our stress load greatly b/c

> before she would

> lose so much weight with every episode. Now we can

> keep food in her

> which is wonderful and we can take her places even

> though she

> doesn't feel good b/c I know she won't vomit all

> over the place. We

> eventually started hooking her up to the pump at

> night so that we

> didn't have to feed her so much with each feeding.

> This was great

> b/c we could start getting more in her b/c she

> basically ate 24

> hours a day without being hooked up to the pump

> during the day. Now

> after some point, maybe 1-2 years ago her vomiting

> started spacing

> out a bit and developed a sort of pattern to it i.e.

> she would have

> an episode every month or two. She would feel awful

> for 5-7 days

> sleeping all the time, cranky, sensitive to light,

> etc. We looked

> into Cyclic Vomitting Syndrome (CVS) and abdominal

> migraines and she

> finally got diagnosed last week with CVS. So we

> finally have a

> diagnosis which is so exciting b/c now we can work

> towards treating

> it. She too had the gurgling sounds. After having

> her Nissen fixed

> this past fall and about a month afterwards we think

> she did develop

> Dumping Syndrome. But by dropping her feeds during

> the day in

> quantity and uping the quantity at night it

> instantly went away and

> so now we are trying to inch them back up again.

> Sorry that this is

> so long but we have had years of dealing with this.

> So here is my

> summary....

> > 1. Switch to liquid food vs powdered.

> > 2. Look into Nutren Junior with Fiber (b/c of the

> added fiber) to

> aid with constipation.

> > 3. Does the vomitting have a pattern to it (i.e.

> every so many

> days). Then look into abdominal migraines and

> cyclic vomitting

> syndrome (CVS)

> > 4. Does your child go to sleep almost instantly,

> have pain, sweat,

> etc. Then look into dumping syndrome.

> > 5. With all of the above, considered hooking your

> child up to a

> pump at night. It really made a world of difference

> for us b/c we

> didn't have to give her so much at each feeding. She

> actually had a

> growth spurt from doing this.

> > Again I apologize for the length. I just signed up

> to this

> listserve last night so this is very new to me. Hope

> this helps. If

> you have any more questions don't hesitate to ask.

> And again time

> makes a big difference as well.

> >

> >

> >

> > Re: Vomiting issues

> >

> >

> > Thanks everybody! I knew you guys would come

> through! I am at

> the

> > point now where I'm even scared to feed her. To

> give some

> background

> > info I may have left out-she is on Reglan and we

> just switched

> to

> > Prevacid from Zantac (and we got a suspension

> made of the

> Prevacid.)

> > She does have reflux but from the last few upper

> GI studies it

> is

> > minimal and what they saw went back down.

> Swallow study shows no

> > aspiration. Even when she vomits she pushes up

> to get her face

> away.

> > She ws vomiting prior to the switch of

> everything just not as

> often

> > and nowhere near as forcefully. The sounds

> coming from her gut

> are

> > like turning a 5 gallon water bottle onto the

> cooler.

> >

> > Believe it or not, I've never vented her tube

> and the GI has

> never

> > asked nor told me to. She is very mucousy but it

> only starts

> running

> > after the first feed of the day. She coughs and

> sneezes like an

> old

> > man all throughout the day. She is not on any

> heart meds. The

> > dumping is something I wondered about when I

> read that post

> about JD

> > a few weeks back. Rasha's complication to adding

> protein is that

> her

> > kidney function is declining and I'm afraid to

> increase her

> protein

> > although neprh doc still estimates function at

> 80%.

> >

> > Her OT suggested today the water 30 min prior.

> I'll try that

> with

>

=== message truncated ===

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wat bout fewer lol love u

>

> Thanks to everyone who offered their knowledge and

> thank you Janay for posing the question. I, too, am

> trying to figure out why Vinny wretches, though he

> doesn't vomit due to the glorious fundoplication.

>

> Janay, how many calories does Rasha get per day? Has

> the increased protein worked (though I know you have

> to be careful with that due to Rasha's kidney issues)?

> Have you decided to start the continuous feeds at

> night?

>

> I am pretty terrified to do continuous feeds at night.

> Aside from feeding the bed (yes, I have done that

> too!), I am afraid that Vinny will start gagging and I

> won't hear it. I am also afraid he will twist himself

> up in the tubing and pull out his mic-key button. (He

> already twists it around while looking at me saying

> " Ah ah ah! " and smiling, of course, that mischievous

> grin!)

>

> Vinny gets 900-1000 calories per day and he hasn't

> gained more than a few ounces since September.

>

> If anyone has suggestions, I'd be so open to them, as

> always!

>

> One last note, Vinny had an ENT appointment today and

> his tube in his left ear needs to be replaced.

> Shucks... we were going for NO ANESTHESIAS in 2007.

> It is not scheduled until the end of March, at which

> point he will also have an MRI of his heart to try to

> find that darn left subclavian artery...

>

> ina, mom to Luca (3.5) & Vinny (1.5 w/ cHARgE)

> --- jkhayes95 <jkhayes95@... <jkhayes95%40yahoo.com>> wrote:

>

> > -nice to meet you! Thank you for the detailed

> > reply-don't

> > apologize for the length! You hit the nail on the

> > head with the

> > stress-level comment. That's part of the reason I'm

> > hesitant to feed

> > throughout the night-I'm scared I won't hear her

> > throwing up or the

> > tubing will come undone and I'll have fed the bed

> > (again).

> >

> > She doesn't seem to feel bad. Even the first wave of

> > vomit comes

> > with no warning-it just flies out. It's the 2nd-5th

> > waves that get

> > loud and she starts freaking out. After a few

> > minutes of hand

> > flapping she's back to her normal, smiling and

> > playful self. I can

> > pick her up and put her in the walker and she'll

> > walk around for

> > hours if I let her.

> >

> > Thanks for the suggestions. I'll check them out!

> >

> > Welcome to the group!

> >

> > Janay

> >

> >

> > >

> > > I have a daughter with CHARGE who will be 4 this

> > April. It seems

> > that we have been dealing with vomitting all of her

> > life. Different

> > things have helped to make a bit of difference but I

> > think a lot of

> > it is due to her getting older. When she was

> > younger, switching her

> > from powdered formula to liquid (didn't matter what

> > brand or type)

> > made a world of difference. Before switching she

> > would scream and

> > cry the entire time (about 1-2 hours) and then vomit

> > everything back

> > up. I cannot even begin to describe the stress level

> > in our house at

> > that time. After some time and many different foods

> > she ended up on

> > Nutren Junior with Fiber. It has added fiber b\c we

> > noticed that

> > when she would get " backed up " she would gag more.

> > Miralax didn't

> > seem to work for her. For her, reflux medication did

> > nothing to

> > eliminate the gagging and wretching. Although the

> > doctors said that

> > it would still help with any burning from reflux.

> > Now she did get a

> > Nissen at 6 months but at some point it came undone.

> > This past fall

> > she had it fixed. Things are great now in the sense

> > that when she

> > gags she doesn't vomit she just might hawk up some

> > spit and mucous.

> > This has eliminated our stress load greatly b/c

> > before she would

> > lose so much weight with every episode. Now we can

> > keep food in her

> > which is wonderful and we can take her places even

> > though she

> > doesn't feel good b/c I know she won't vomit all

> > over the place. We

> > eventually started hooking her up to the pump at

> > night so that we

> > didn't have to feed her so much with each feeding.

> > This was great

> > b/c we could start getting more in her b/c she

> > basically ate 24

> > hours a day without being hooked up to the pump

> > during the day. Now

> > after some point, maybe 1-2 years ago her vomiting

> > started spacing

> > out a bit and developed a sort of pattern to it i.e.

> > she would have

> > an episode every month or two. She would feel awful

> > for 5-7 days

> > sleeping all the time, cranky, sensitive to light,

> > etc. We looked

> > into Cyclic Vomitting Syndrome (CVS) and abdominal

> > migraines and she

> > finally got diagnosed last week with CVS. So we

> > finally have a

> > diagnosis which is so exciting b/c now we can work

> > towards treating

> > it. She too had the gurgling sounds. After having

> > her Nissen fixed

> > this past fall and about a month afterwards we think

> > she did develop

> > Dumping Syndrome. But by dropping her feeds during

> > the day in

> > quantity and uping the quantity at night it

> > instantly went away and

> > so now we are trying to inch them back up again.

> > Sorry that this is

> > so long but we have had years of dealing with this.

> > So here is my

> > summary....

> > > 1. Switch to liquid food vs powdered.

> > > 2. Look into Nutren Junior with Fiber (b/c of the

> > added fiber) to

> > aid with constipation.

> > > 3. Does the vomitting have a pattern to it (i.e.

> > every so many

> > days). Then look into abdominal migraines and

> > cyclic vomitting

> > syndrome (CVS)

> > > 4. Does your child go to sleep almost instantly,

> > have pain, sweat,

> > etc. Then look into dumping syndrome.

> > > 5. With all of the above, considered hooking your

> > child up to a

> > pump at night. It really made a world of difference

> > for us b/c we

> > didn't have to give her so much at each feeding. She

> > actually had a

> > growth spurt from doing this.

> > > Again I apologize for the length. I just signed up

> > to this

> > listserve last night so this is very new to me. Hope

> > this helps. If

> > you have any more questions don't hesitate to ask.

> > And again time

> > makes a big difference as well.

> > >

> > >

> > >

> > > Re: Vomiting issues

> > >

> > >

> > > Thanks everybody! I knew you guys would come

> > through! I am at

> > the

> > > point now where I'm even scared to feed her. To

> > give some

> > background

> > > info I may have left out-she is on Reglan and we

> > just switched

> > to

> > > Prevacid from Zantac (and we got a suspension

> > made of the

> > Prevacid.)

> > > She does have reflux but from the last few upper

> > GI studies it

> > is

> > > minimal and what they saw went back down.

> > Swallow study shows no

> > > aspiration. Even when she vomits she pushes up

> > to get her face

> > away.

> > > She ws vomiting prior to the switch of

> > everything just not as

> > often

> > > and nowhere near as forcefully. The sounds

> > coming from her gut

> > are

> > > like turning a 5 gallon water bottle onto the

> > cooler.

> > >

> > > Believe it or not, I've never vented her tube

> > and the GI has

> > never

> > > asked nor told me to. She is very mucousy but it

> > only starts

> > running

> > > after the first feed of the day. She coughs and

> > sneezes like an

> > old

> > > man all throughout the day. She is not on any

> > heart meds. The

> > > dumping is something I wondered about when I

> > read that post

> > about JD

> > > a few weeks back. Rasha's complication to adding

> > protein is that

> > her

> > > kidney function is declining and I'm afraid to

> > increase her

> > protein

> > > although neprh doc still estimates function at

> > 80%.

> > >

> > > Her OT suggested today the water 30 min prior.

> > I'll try that

> > with

> >

> === message truncated ===

>

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Janay and ina-

We used a Danny Sling when Aubrie was continuous fed overnight. I searched,

but could not find an image online anywhere. It looks like there is a

similar product called a Tucker Sling as well. Both are soft restraints

that keep the child upright in the bed. It's basically a cloth Velcro

diaper cover that ties onto the crib/bed. So imagine that the child is

velcroed in to this soft diaper cover. Then they can't wiggle upside down

or sideways. They also can't roll over. It's limiting developmentally, but

it sure was critical for us at the time.

The head of Aubrie's bed was raised and she had the tubing to the feeding

pump. We couldn't let her wiggle herself upside-down on that incline, nor

could we let her get tangled in the tubing. Mind you, she was less than a

year old at the time so she was agreeable to it.

I think we got ours from the hospital. When I did a search, it looked like

an item that is covered by insurance with a dr's order. So maybe asking the

doctor or medical supply would be the route to go if you are interested.

I've since passed ours on to another family.

Michele W

Aubrie's mom 9 yrs

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Thanks, Michele. That is an interesting option if the

need arises.

ina

--- Michele Westmaas

wrote:

> Janay and ina-

>

> We used a Danny Sling when Aubrie was continuous fed

> overnight. I searched,

> but could not find an image online anywhere. It

> looks like there is a

> similar product called a Tucker Sling as well. Both

> are soft restraints

> that keep the child upright in the bed. It's

> basically a cloth Velcro

> diaper cover that ties onto the crib/bed. So

> imagine that the child is

> velcroed in to this soft diaper cover. Then they

> can't wiggle upside down

> or sideways. They also can't roll over. It's

> limiting developmentally, but

> it sure was critical for us at the time.

>

>

>

> The head of Aubrie's bed was raised and she had the

> tubing to the feeding

> pump. We couldn't let her wiggle herself

> upside-down on that incline, nor

> could we let her get tangled in the tubing. Mind

> you, she was less than a

> year old at the time so she was agreeable to it.

>

>

>

> I think we got ours from the hospital. When I did a

> search, it looked like

> an item that is covered by insurance with a dr's

> order. So maybe asking the

> doctor or medical supply would be the route to go if

> you are interested.

> I've since passed ours on to another family.

>

>

>

> Michele W

> Aubrie's mom 9 yrs

>

>

>

> [Non-text portions of this message have been

> removed]

>

>

________________________________________________________________________________\

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Sorry I missed a lot of this conversation. We are actually in the

hospital now trying to get " answers " . When she yanked her tube out

yesterday morning and I called the GI to be a squeaky wheel, he said

come in and we'll run some tests. Chest x-ray is showing pneumonia. I

am not content with that being the end-all answer. She has more

problems than that!

ina, she takes the same amount as Vinny. Not quite 1000 cal per

day. Whoever just suggested the DuoCal as a problem, I'm thinking

that might not be a bad idea. Sorry I couldn't see who said what, I'm

in the parent room and I have to get back. I don't believe in leaving

her alone for too long and no one would hear her crying either.

GI doesn't think the root is a GI problem. He's called the

pulmonologist for a consult and we're waiting to hear. Someone

ordered albuterol neb-not sure who so I told them to wait for pulm

Doc so he can hear the REAL Rasha. Think we might be looking at a

bronchoscopy which has never been done-even when they wanted to trach

her for the laryngomalacia.

I'll update soon and I'm sorry I couldn't read closer as I think I

read CHrystine is in the hospital too?

Janay

> > >

> > > I have a daughter with CHARGE who will be 4 this

> > April. It seems

> > that we have been dealing with vomitting all of her

> > life. Different

> > things have helped to make a bit of difference but I

> > think a lot of

> > it is due to her getting older. When she was

> > younger, switching her

> > from powdered formula to liquid (didn't matter what

> > brand or type)

> > made a world of difference. Before switching she

> > would scream and

> > cry the entire time (about 1-2 hours) and then vomit

> > everything back

> > up. I cannot even begin to describe the stress level

> > in our house at

> > that time. After some time and many different foods

> > she ended up on

> > Nutren Junior with Fiber. It has added fiber b\c we

> > noticed that

> > when she would get " backed up " she would gag more.

> > Miralax didn't

> > seem to work for her. For her, reflux medication did

> > nothing to

> > eliminate the gagging and wretching. Although the

> > doctors said that

> > it would still help with any burning from reflux.

> > Now she did get a

> > Nissen at 6 months but at some point it came undone.

> > This past fall

> > she had it fixed. Things are great now in the sense

> > that when she

> > gags she doesn't vomit she just might hawk up some

> > spit and mucous.

> > This has eliminated our stress load greatly b/c

> > before she would

> > lose so much weight with every episode. Now we can

> > keep food in her

> > which is wonderful and we can take her places even

> > though she

> > doesn't feel good b/c I know she won't vomit all

> > over the place. We

> > eventually started hooking her up to the pump at

> > night so that we

> > didn't have to feed her so much with each feeding.

> > This was great

> > b/c we could start getting more in her b/c she

> > basically ate 24

> > hours a day without being hooked up to the pump

> > during the day. Now

> > after some point, maybe 1-2 years ago her vomiting

> > started spacing

> > out a bit and developed a sort of pattern to it i.e.

> > she would have

> > an episode every month or two. She would feel awful

> > for 5-7 days

> > sleeping all the time, cranky, sensitive to light,

> > etc. We looked

> > into Cyclic Vomitting Syndrome (CVS) and abdominal

> > migraines and she

> > finally got diagnosed last week with CVS. So we

> > finally have a

> > diagnosis which is so exciting b/c now we can work

> > towards treating

> > it. She too had the gurgling sounds. After having

> > her Nissen fixed

> > this past fall and about a month afterwards we think

> > she did develop

> > Dumping Syndrome. But by dropping her feeds during

> > the day in

> > quantity and uping the quantity at night it

> > instantly went away and

> > so now we are trying to inch them back up again.

> > Sorry that this is

> > so long but we have had years of dealing with this.

> > So here is my

> > summary....

> > > 1. Switch to liquid food vs powdered.

> > > 2. Look into Nutren Junior with Fiber (b/c of the

> > added fiber) to

> > aid with constipation.

> > > 3. Does the vomitting have a pattern to it (i.e.

> > every so many

> > days). Then look into abdominal migraines and

> > cyclic vomitting

> > syndrome (CVS)

> > > 4. Does your child go to sleep almost instantly,

> > have pain, sweat,

> > etc. Then look into dumping syndrome.

> > > 5. With all of the above, considered hooking your

> > child up to a

> > pump at night. It really made a world of difference

> > for us b/c we

> > didn't have to give her so much at each feeding. She

> > actually had a

> > growth spurt from doing this.

> > > Again I apologize for the length. I just signed up

> > to this

> > listserve last night so this is very new to me. Hope

> > this helps. If

> > you have any more questions don't hesitate to ask.

> > And again time

> > makes a big difference as well.

> > >

> > >

> > >

> > > Re: Vomiting issues

> > >

> > >

> > > Thanks everybody! I knew you guys would come

> > through! I am at

> > the

> > > point now where I'm even scared to feed her. To

> > give some

> > background

> > > info I may have left out-she is on Reglan and we

> > just switched

> > to

> > > Prevacid from Zantac (and we got a suspension

> > made of the

> > Prevacid.)

> > > She does have reflux but from the last few upper

> > GI studies it

> > is

> > > minimal and what they saw went back down.

> > Swallow study shows no

> > > aspiration. Even when she vomits she pushes up

> > to get her face

> > away.

> > > She ws vomiting prior to the switch of

> > everything just not as

> > often

> > > and nowhere near as forcefully. The sounds

> > coming from her gut

> > are

> > > like turning a 5 gallon water bottle onto the

> > cooler.

> > >

> > > Believe it or not, I've never vented her tube

> > and the GI has

> > never

> > > asked nor told me to. She is very mucousy but it

> > only starts

> > running

> > > after the first feed of the day. She coughs and

> > sneezes like an

> > old

> > > man all throughout the day. She is not on any

> > heart meds. The

> > > dumping is something I wondered about when I

> > read that post

> > about JD

> > > a few weeks back. Rasha's complication to adding

> > protein is that

> > her

> > > kidney function is declining and I'm afraid to

> > increase her

> > protein

> > > although neprh doc still estimates function at

> > 80%.

> > >

> > > Her OT suggested today the water 30 min prior.

> > I'll try that

> > with

> >

> === message truncated ===

>

>

>

>

>

______________________________________________________________________

______________

> It's here! Your new message!

> Get new email alerts with the free Yahoo! Toolbar.

> http://tools.search.yahoo.com/toolbar/features/mail/

>

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