Re: NEW MEMBER WHO WANTS TO SAY HELLO

[Guest guest]

Hi ,

I have twins wcf, Mick and Alli. They are both

tube-fed, and have a severe oral aversion. They don't

eat

anything, though they do put things in their mouths

and then spit them out. They get overnight feeds as

well.

They are currently on pediasure with polycose for

extra calories. We are working with an OT to address

their feeding issues. Are you doing that as well?

My twins were born prematurely - about 14 weeks, so

they were extremely preemie. Was Athena born early

as well? Often this causes feeding problems, but

cfers may also have major feeding problems because

of the excess acid in their stomachs, which can lead

to reflux. Have your doctors suggested testing for

this?

Athena sounds like a lovely girl.

Good luck,

C

Mommy to Mick and Alli, 3.5 yo twins wcf

--- aegoetter@... wrote:

> Hi my name is and I have one child with cystic

> fibrosis. She is 11 years

> old now. She had a feeding tube put in when she was

> a baby. She has a special

> medical drink that she drinks 3 times a day. If she

> can't finish it the rest

> goes in her tube. She is also on a machine overnight

> to give her more

> calories. She eats a little but has a hard time

> unless the food is soft like yogurt or

> pudding. She never seems to have an appetite but

> then she is getting alot of

> liquids throughout the day. But she needs these to

> gain weight. She started

> middle school this year and we haven't been able to

> get the bus because it comes

> so early and her school starts at 8:10. I have to

> drive her and she gets the

> bus home. Her elementary school bus came at 8:30 and

> she was usually ready and

> if not I had until 9:00 to get her there. Hopefully

> we can start to get

> everything done so she can start getting on the bus.

> She has also been having a

> problem with dry skin and it gets itchy on her face.

> She is on something

> overnight called perative and I am wondering if this

> could be causing it. She was

> always on vivonex before. They found out in May that

> she doesn't have a milk

> allergy anymore so now they are giving her more milk

> products. Vivonex did not have

> any milk in it. Perative is easier I just have to

> open 4 cans every night and

> put it in the kangaroo feeding bag. The vivonex had

> to be mixed in a blender

> with water measured exactly right and sometime add

> something called duocal for

> calories. I did this for 11 years every night until

> the perative in July. I

> would rather not use perative if this is causing the

> itching. She was also on

> pregestimal for 9 years. It had to be mixed in the

> blender also with water

> measured. It had to go in her tube 3 times a day

> because the taste was so bad. 2

> years ago they gave her someting called E028 a

> pineapple drink and she likes

> it. They now want her to switch over to boost

> instead because it is a milk

> product but she doesn't like the taste. I know they

> are annoyed at her and I hope

> they continue to renew her script with the insurance

> company for it. She gets

> her feeding supplies from a company called Apria

> Healthcare. They said if she

> likes it she should have it. Does anyone have any

> experience with feeding tubes

> and these products. She is happy and does well in

> school.

> Thank-you for listening.

> Love,

> - mother of Athena wcf

>

>

[Guest guest]

Welcome; and sympathy and hughest hopes!

n wcf, 66, mom of 3 adults, youngest wcf, too;

I was premature; my parents thought that I would never

get over oral aversion; happened at about 14 or so--been

overcompensating ever since--mayt it be so with all those

with this condition with this condition in early childhood.

Love to all at cfparents,

n Rojas

Re: NEW MEMBER WHO WANTS TO SAY HELLO

> Hi ,

>

> I have twins wcf, Mick and Alli. They are both

> tube-fed, and have a severe oral aversion. They don't

> eat

> anything, though they do put things in their mouths

> and then spit them out. They get overnight feeds as

> well.

>

> They are currently on pediasure with polycose for

> extra calories. We are working with an OT to address

> their feeding issues. Are you doing that as well?

>

> My twins were born prematurely - about 14 weeks, so

> they were extremely preemie. Was Athena born early

> as well? Often this causes feeding problems, but

> cfers may also have major feeding problems because

> of the excess acid in their stomachs, which can lead

> to reflux. Have your doctors suggested testing for

> this?

>

> Athena sounds like a lovely girl.

>

> Good luck,

>

> C

> Mommy to Mick and Alli, 3.5 yo twins wcf

>

> --- aegoetter@... wrote:

> > Hi my name is and I have one child with cystic

> > fibrosis. She is 11 years

> > old now. She had a feeding tube put in when she was

> > a baby. She has a special

> > medical drink that she drinks 3 times a day. If she

> > can't finish it the rest

> > goes in her tube. She is also on a machine overnight

> > to give her more

> > calories. She eats a little but has a hard time

> > unless the food is soft like yogurt or

> > pudding. She never seems to have an appetite but

> > then she is getting alot of

> > liquids throughout the day. But she needs these to

> > gain weight. She started

> > middle school this year and we haven't been able to

> > get the bus because it comes

> > so early and her school starts at 8:10. I have to

> > drive her and she gets the

> > bus home. Her elementary school bus came at 8:30 and

> > she was usually ready and

> > if not I had until 9:00 to get her there. Hopefully

> > we can start to get

> > everything done so she can start getting on the bus.

> > She has also been having a

> > problem with dry skin and it gets itchy on her face.

> > She is on something

> > overnight called perative and I am wondering if this

> > could be causing it. She was

> > always on vivonex before. They found out in May that

> > she doesn't have a milk

> > allergy anymore so now they are giving her more milk

> > products. Vivonex did not have

> > any milk in it. Perative is easier I just have to

> > open 4 cans every night and

> > put it in the kangaroo feeding bag. The vivonex had

> > to be mixed in a blender

> > with water measured exactly right and sometime add

> > something called duocal for

> > calories. I did this for 11 years every night until

> > the perative in July. I

> > would rather not use perative if this is causing the

> > itching. She was also on

> > pregestimal for 9 years. It had to be mixed in the

> > blender also with water

> > measured. It had to go in her tube 3 times a day

> > because the taste was so bad. 2

> > years ago they gave her someting called E028 a

> > pineapple drink and she likes

> > it. They now want her to switch over to boost

> > instead because it is a milk

> > product but she doesn't like the taste. I know they

> > are annoyed at her and I hope

> > they continue to renew her script with the insurance

> > company for it. She gets

> > her feeding supplies from a company called Apria

> > Healthcare. They said if she

> > likes it she should have it. Does anyone have any

> > experience with feeding tubes

> > and these products. She is happy and does well in

> > school.

> > Thank-you for listening.

> > Love,

> > - mother of Athena wcf

> >

> >

>

>

>

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

> The opinions and information exchanged on this list should IN NO WAY

> be construed as medical advice.

>

> PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR

TREATMENTS.

>

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

>

>

>

[Guest guest]

You know, if she doesn't like the taste then she shouldn't have to switch. That

is her choice, not the doctor's.

Dawn mom of 4, 7 and under, the youngest wcf

p.s. Welcome to the group . :-)

[Guest guest]

,

Welcome to the group. I hope that you can find lots of answers and

people with similar experiences here.

Does Athena have trouble swallowing?

Gale

> Hi my name is and I have one child with cystic fibrosis. She

is 11 years

> old now. She had a feeding tube put in when she was a baby. She has

a special

> medical drink that she drinks 3 times a day. If she can't finish it

the rest

> goes in her tube. She is also on a machine overnight to give her

more

> calories. She eats a little but has a hard time unless the food is

soft like yogurt or

> pudding. She never seems to have an appetite but then she is

getting alot of

> liquids throughout the day. But she needs these to gain weight. She

started

> middle school this year and we haven't been able to get the bus

because it comes

> so early and her school starts at 8:10. I have to drive her and she

gets the

> bus home. Her elementary school bus came at 8:30 and she was

usually ready and

> if not I had until 9:00 to get her there. Hopefully we can start to

get

> everything done so she can start getting on the bus. She has also

been having a

> problem with dry skin and it gets itchy on her face. She is on

something

> overnight called perative and I am wondering if this could be

causing it. She was

> always on vivonex before. They found out in May that she doesn't

have a milk

> allergy anymore so now they are giving her more milk products.

Vivonex did not have

> any milk in it. Perative is easier I just have to open 4 cans every

night and

> put it in the kangaroo feeding bag. The vivonex had to be mixed in

a blender

> with water measured exactly right and sometime add something called

duocal for

> calories. I did this for 11 years every night until the perative in

July. I

> would rather not use perative if this is causing the itching. She

was also on

> pregestimal for 9 years. It had to be mixed in the blender also

with water

> measured. It had to go in her tube 3 times a day because the taste

was so bad. 2

> years ago they gave her someting called E028 a pineapple drink and

she likes

> it. They now want her to switch over to boost instead because it is

a milk

> product but she doesn't like the taste. I know they are annoyed at

her and I hope

> they continue to renew her script with the insurance company for

it. She gets

> her feeding supplies from a company called Apria Healthcare. They

said if she

> likes it she should have it. Does anyone have any experience with

feeding tubes

> and these products. She is happy and does well in school.

> Thank-you for listening.

> Love,

> - mother of Athena wcf

[Guest guest]

,

Wow! You and Athena have really been through a lot! I am glad to

hear that she is happy. That is SO important.

I really like Athena's name.

Gale