Re: Reflux & G tube -

[Guest guest]

,

Thanks for the answers. Someone on this list talked about

Pancrecarb. It's an enzyme that has a bi-carbonate coating. We

asked Abby's doctor if we could try it and he gave us some samples.

It has been three days and so far it seems to have stopped the

reflux. It may be too soon to know, but she was refluxing about 20

times a day before we switched enzymes.

Abby also gags on solid foods. It's so disappointing when she

loses everything that she just ate. Her food needs to be the

consistancy of pudding. It was really interesting to see that Emma

also gags on solids.

Thank you again for your response.

Gale

> Sorry I didn't respond sooner. I don't always have a chance to

check my

> mail every day. Anyway, I am not sure how much help I will be with

your

> questions. Emma also has swallowing issues but as of yet has not

had any

> lung issues associated with her feeding issues. We actually thin

her

> food down because if it's too thick, she gags and pukes up the

entire

> contents of her stomach. Emma is on pureed solid foods because of

this

> gagging issue. She tends to not chew her food properly and then

when she

> swallows, she gags because it gets caught in her throat. For Emma,

her

> reflux has not improved when she started eating solid foods, it's

> actually gotten worse but again that's because of the fact that

food is

> thicker and she gagged on it. I am not sure that Emma's reflux has

been

> typical of what usually happens. She started out by slowly

decreasing

> what she ate and eventually over time, she totally stopped eating or

> drinking. At that time, she was not vomiting at all but was

determined

> via tests to have silent reflux. Eventually, she was hospitalized

and

> finally given some meds that helped (we switched CF care centers

because

> of the ineffectiveness of her original doctors in diagnosing and

treating

> her acid reflux and at her first visit to CHOP, they hospitalized

her

> that day). It was only after she started eating again that she

actually

> began to vomit. My point being that since her reflux has been a

little

> different than most cases, I am not sure she is the best example of

what

> typically happens. I also think as is the case with most things

> associated with CF, every case is different and hard to predict.

Emma is

> also only a little over two and her esphogaus may yet not have

gotten

> long enough yet. I am crossing my fingers that this is the case

and that

> she grows out of it (and Abby too).

>

> - mom to Emma 2 years w/cf and Isabelle 4 years wo/cf

>

>

> > We have not done any upside-down therapy for about a month.

Abby's

> > CF doctor is concerned that she may asperate some of her stomach

> > fluids into her lungs. Abby coughes throughout the day. Her

doctor

> >

> > believes that this is do to the reflux also. Abby had the upper

> > lobe

> > of her right lung removed in June. It was too severely damaged

and

> > would only have a been a source for infections. It was probably

> > damaged from the reflux. Abby is working with a GI doctor at the

CF

> >

> > clinic. All of the doctors there are impressive. They remember

the

> >

> > details of Abby's case and always discuss Abby's visits with each

> > other.

> >

> > Abby is only 10 months old. She also has issues with

swallowing.

> > Her formual must be thickened or some of it enters her lungs.

> > The doctors are hoping that Abby will outgrow both the reflux and

> > swallow issues. As her asophagas gets longer, the reflux may go

> > away. The reflux may be causing the swallow issue. We have to

wait

> >

> > and see.

> >

> > Here's my questions:

> > 1. Do you know of anything we should consider trying?

> > 2. Does reflux improve when they start eating solid foods?

> >

>

>

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[Guest guest]

,

Thanks for the answers. Someone on this list talked about

Pancrecarb. It's an enzyme that has a bi-carbonate coating. We

asked Abby's doctor if we could try it and he gave us some samples.

It has been three days and so far it seems to have stopped the

reflux. It may be too soon to know, but she was refluxing about 20

times a day before we switched enzymes.

Abby also gags on solid foods. It's so disappointing when she

loses everything that she just ate. Her food needs to be the

consistancy of pudding. It was really interesting to see that Emma

also gags on solids.

Thank you again for your response.

Gale

> Sorry I didn't respond sooner. I don't always have a chance to

check my

> mail every day. Anyway, I am not sure how much help I will be with

your

> questions. Emma also has swallowing issues but as of yet has not

had any

> lung issues associated with her feeding issues. We actually thin

her

> food down because if it's too thick, she gags and pukes up the

entire

> contents of her stomach. Emma is on pureed solid foods because of

this

> gagging issue. She tends to not chew her food properly and then

when she

> swallows, she gags because it gets caught in her throat. For Emma,

her

> reflux has not improved when she started eating solid foods, it's

> actually gotten worse but again that's because of the fact that

food is

> thicker and she gagged on it. I am not sure that Emma's reflux has

been

> typical of what usually happens. She started out by slowly

decreasing

> what she ate and eventually over time, she totally stopped eating or

> drinking. At that time, she was not vomiting at all but was

determined

> via tests to have silent reflux. Eventually, she was hospitalized

and

> finally given some meds that helped (we switched CF care centers

because

> of the ineffectiveness of her original doctors in diagnosing and

treating

> her acid reflux and at her first visit to CHOP, they hospitalized

her

> that day). It was only after she started eating again that she

actually

> began to vomit. My point being that since her reflux has been a

little

> different than most cases, I am not sure she is the best example of

what

> typically happens. I also think as is the case with most things

> associated with CF, every case is different and hard to predict.

Emma is

> also only a little over two and her esphogaus may yet not have

gotten

> long enough yet. I am crossing my fingers that this is the case

and that

> she grows out of it (and Abby too).

>

> - mom to Emma 2 years w/cf and Isabelle 4 years wo/cf

>

>

> > We have not done any upside-down therapy for about a month.

Abby's

> > CF doctor is concerned that she may asperate some of her stomach

> > fluids into her lungs. Abby coughes throughout the day. Her

doctor

> >

> > believes that this is do to the reflux also. Abby had the upper

> > lobe

> > of her right lung removed in June. It was too severely damaged

and

> > would only have a been a source for infections. It was probably

> > damaged from the reflux. Abby is working with a GI doctor at the

CF

> >

> > clinic. All of the doctors there are impressive. They remember

the

> >

> > details of Abby's case and always discuss Abby's visits with each

> > other.

> >

> > Abby is only 10 months old. She also has issues with

swallowing.

> > Her formual must be thickened or some of it enters her lungs.

> > The doctors are hoping that Abby will outgrow both the reflux and

> > swallow issues. As her asophagas gets longer, the reflux may go

> > away. The reflux may be causing the swallow issue. We have to

wait

> >

> > and see.

> >

> > Here's my questions:

> > 1. Do you know of anything we should consider trying?

> > 2. Does reflux improve when they start eating solid foods?

> >

>

>

> ________________________________________________________________

> Sign Up for Juno Platinum Internet Access Today

> Only $9.95 per month!

> Visit www.juno.com

[Guest guest]

A few people have been talking about reflux lately and I thought I'd

just share my experience. Wyatt had refulx. Not so bad he couldn't

eat at all orally but when he vomitted it was like the exorcist.

After months and months of ruined receiving blankets and clothes I

finally wised up and began to carry a box of quart or gallon sized

ziploc baggies in my diaper bag as well as multiple changes of

clothing for him and us! He was breastfed and ate every hour and spit

back up probably a good half of what he ate. I never thought he'd

outgrow it but around 18 months to 2 years it stopped unless he was

sick and coughing VERY hard. He of course was to young to hawk it up

and spit it out so if he had to get rid of extra phlegm he threw up.

When he started eating cereal and formula (I had to stop

breastfeeding for nourishment at 8 months old by order of the doctor

but got to do it for comfort till he weaned himself the day before he

turned one year old) we added LOTS of rice cereal to 30cal

nutramagean and it was like a thick Mc's shake consistency. He

never used a bottle but we had to use a sippy cup w/ a large opening

so the formula would get through.

It does and it will get better little by little the older they get

and the more solid food you can get down them. It just takes them

longer than a " non cf " baby to strenghthen the muscle that keeps the

food down because of their coughing.

If you have babies on formula that need to put on weight you may

talk to your dietician about doing something like I did w/ a30cal

nutramagen with rice cereal and there was a little packet of

flavoring that added extra calories we used too. I forget exactly why

nutramagen as it is the most expensive formula out there but I think

because it's very close to breastmilk and I mixed it to get maximum

calories out of it so instead of one scoop formula to one ounce water

I used 3 or 4 scoops per ounce of water. I went through a can a day I

think so I applied for WIC and had the doctor write a letter of

medical necessity and I believe if I'm correct I got all the formula

I needed for the month free through WIC (CASES OF IT!!) When Wyatt

stopped using formula I actually returned a couple of cases I had

left over.

Anyways, just a thought. Maybe that will help someone! Christy mom

of Wyatt 7wcf and Hunter 2.5 wocf