Re: Conway..eating issues, thanks!!

[Guest guest]

Thanks, Natalia

I hope it's not all for naught. I saw n's post

about the possibility she's a hacker. I think the

likelihood is that she's legitimate, but you never

know.

all my best,

C

Mommy to Mick and Alli, 4 yo twins wcf

--- Natalia Boguslawska wrote:

> Wow, thanks .

> Some amazing things is this post. That's great, and

> I am sure is much

> much appreciated!!

>

> Natalia

> 24 w CF

>

>

> On Monday, February 23, 2004, at 04:07 PM, linda

> conway wrote:

>

> > Hi Natalia,

> >

> > I'll give you the benefit of my experience here.

> > My twins, Mick and Alli, were born at 25.5 weeks

> > gestation, and were on ventilators for several

> months

> > before they were diagnosed with CF and given the

> > appropriate treatments. Although this allowed my

> > son and daughter to be weaned from ventilators, an

> > aspiration episode caused my daughter to go back

> on

> > for much longer.

> >

> > As a result, both children have oral aversions

> that

> > required a feeding tube, and on-going feeding

> therapy.

> > My son, who suffers less from reflux (but has it

> to

> > a small degree) does much better at feeding

> therapy

> > than my daughter, who throws up at least twice a

> day,

> > despite getting all the meds known to man (except

> > propulsid, which is off the market). Both have had

> > nissen fundoplications, which is a surgery

> designed to

> > tighten the sphincter between the stomach and

> > esophagus, to prevent vomitting. But, 's

> > loosened up, though not enough to warrant another

> > surgery.

> >

> > I'm sure these are extreme cases, but their

> current

> > issues are more related to the reflux now than the

> > extended stay on the ventilators. I would suggest

> > that your friend see a gastro-enterologist about

> the

> > possibility of her daughter having reflux (it can

> be

> > silent). She should also see a feeding therapist,

> if

> > the situation is severe.

> >

> > Some parents are driven to distraction by their

> > children's picky eating habits, and you didn't

> > actually say how old she was. So, just in case it

> > isn't a case of relux causing aversion, here are

> some

> > other reasons for a child not eating:

> >

> > 1. She's teething. Infants and toddlers often lose

> > their appetites when they're teething. It can be a

> > challenge to get them to eat anything at this

> time.

> > Fortunately, as their teeth grow in and the

> discomfort

> > leaves, they grow out of this. Your pediatrician

> can

> > help with this one.

> >

> > 2. She has some kind of tactile sensitivity. Many

> > children who have undergone alot of procedures

> where

> > they get pricked and prodded a great deal (and cf

> > kids fall into this category), become highly

> > sensitized to textures and touch. This can even

> > mean the textures and temperatures in food! A

> > good feeding therapist would help here.

> >

> > 3. The normal range of pickiness found in some

> > children. I was extremely picky as a child, though

> > there were some foods I particularly liked, most

> would

> > make me gag - green vegetables, spaghetti sauce.

> This

> > can be especially worrisome for a cf child.

> Usually,

> > over time, these children start developing more

> > tastes for different foods - I certainly did! ;-)

> > Just keep giving her the foods she likes (even if

> > it's only one kind at first) and continue

> introducing

> > new foods. Also, re-introduce foods she didn't

> like

> > before, because she may change her mind about them

> > later. NEVER EVER force food on her, and always

> make

> > the experience pleasant and fun.

> >

> > Surgery (getting a mic-key button in this case)

> > is always the last resort, but if her child is

> > dangerously close to malnutrition and severely

> > underweight, it may be the best solution for her

> now.

> > She can deal with the feeding issues at the same

> time

> > she is getting well-nourished with the tube.

> >

> > As a final thought - don't solve this alone - get

> > professional help starting with a

> gastro-enterologist

> > (one with alot of cf patients and patients with

> > feeding issues), and get referrals to a good

> feeding

> > therapist.

> >

> > Best of luck to your friend and her daughter. If

> > she'd like to correspond with me further about

> this

> > please pass on my e-mail address:

> >

> > pswyd@...

> >

> > hugs,

> >

> > C

> > Mommy to Mick and Alli, 4 yo twins wcf

> >

> >

> >

> > --- Natalia Boguslawska

> wrote:

> > > Can you guys do me a favour.  I got an email

> from a

> > > lady that will not

> > > give me her name, and she asks for support about

> her

> > > CF child that will

> > > not eat a lot.  This has caused many problems.

> > > She wants to hear some stories about other kids

> that

> > > don't want to eat,

> > > some solutions, feeding tubes etc.

> > > She really appreciates it.   I am flattered that

> she

> > > chose me to help

> > > her, and take her request seriously.  So let's

> share

> > > our stories.  I

> > > know that this is a huge problem for a lot of CF

> > > kids, including the

> > > non-kids like myself that has always had trouble

> > > eating enough.

> > >

> > > Thanks everyone!!

> > > Natalia

> > > 24 w CF

> > >

> > >

> >

> >

> >

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

> > 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.

> >

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

> >

> >

> >

> <image.tiff>

> >

> >

[Guest guest]

Natalia,

Oops! I didn't see the latest post from n and

you regarding your friend. That'll teach me to read

all my e-mails before posting.

hugs,

C

--- linda conway wrote:

> Thanks, Natalia

>

> I hope it's not all for naught. I saw n's post

> about the possibility she's a hacker. I think the

> likelihood is that she's legitimate, but you never

> know.

>

> all my best,

>

> C

> Mommy to Mick and Alli, 4 yo twins wcf

>

> --- Natalia Boguslawska wrote:

> > Wow, thanks .

> > Some amazing things is this post. That's great,

> and

> > I am sure is much

> > much appreciated!!

> >

> > Natalia

> > 24 w CF

> >

> >

> > On Monday, February 23, 2004, at 04:07 PM, linda

> > conway wrote:

> >

> > > Hi Natalia,

> > >

> > > I'll give you the benefit of my experience here.

> > > My twins, Mick and Alli, were born at 25.5 weeks

> > > gestation, and were on ventilators for several

> > months

> > > before they were diagnosed with CF and given the

> > > appropriate treatments. Although this allowed my

> > > son and daughter to be weaned from ventilators,

> an

> > > aspiration episode caused my daughter to go back

> > on

> > > for much longer.

> > >

> > > As a result, both children have oral aversions

> > that

> > > required a feeding tube, and on-going feeding

> > therapy.

> > > My son, who suffers less from reflux (but has it

> > to

> > > a small degree) does much better at feeding

> > therapy

> > > than my daughter, who throws up at least twice a

> > day,

> > > despite getting all the meds known to man

> (except

> > > propulsid, which is off the market). Both have

> had

> > > nissen fundoplications, which is a surgery

> > designed to

> > > tighten the sphincter between the stomach and

> > > esophagus, to prevent vomitting. But, 's

> > > loosened up, though not enough to warrant

> another

> > > surgery.

> > >

> > > I'm sure these are extreme cases, but their

> > current

> > > issues are more related to the reflux now than

> the

> > > extended stay on the ventilators. I would

> suggest

> > > that your friend see a gastro-enterologist about

> > the

> > > possibility of her daughter having reflux (it

> can

> > be

> > > silent). She should also see a feeding

> therapist,

> > if

> > > the situation is severe.

> > >

> > > Some parents are driven to distraction by their

> > > children's picky eating habits, and you didn't

> > > actually say how old she was. So, just in case

> it

> > > isn't a case of relux causing aversion, here are

> > some

> > > other reasons for a child not eating:

> > >

> > > 1. She's teething. Infants and toddlers often

> lose

> > > their appetites when they're teething. It can be

> a

> > > challenge to get them to eat anything at this

> > time.

> > > Fortunately, as their teeth grow in and the

> > discomfort

> > > leaves, they grow out of this. Your pediatrician

> > can

> > > help with this one.

> > >

> > > 2. She has some kind of tactile sensitivity.

> Many

> > > children who have undergone alot of procedures

> > where

> > > they get pricked and prodded a great deal (and

> cf

> > > kids fall into this category), become highly

> > > sensitized to textures and touch. This can even

> > > mean the textures and temperatures in food! A

> > > good feeding therapist would help here.

> > >

> > > 3. The normal range of pickiness found in some

> > > children. I was extremely picky as a child,

> though

> > > there were some foods I particularly liked, most

> > would

> > > make me gag - green vegetables, spaghetti sauce.

> > This

> > > can be especially worrisome for a cf child.

> > Usually,

> > > over time, these children start developing more

> > > tastes for different foods - I certainly did!

> ;-)

> > > Just keep giving her the foods she likes (even

> if

> > > it's only one kind at first) and continue

> > introducing

> > > new foods. Also, re-introduce foods she didn't

> > like

> > > before, because she may change her mind about

> them

> > > later. NEVER EVER force food on her, and always

> > make

> > > the experience pleasant and fun.

> > >

> > > Surgery (getting a mic-key button in this case)

> > > is always the last resort, but if her child is

> > > dangerously close to malnutrition and severely

> > > underweight, it may be the best solution for her

> > now.

> > > She can deal with the feeding issues at the same

> > time

> > > she is getting well-nourished with the tube.

> > >

> > > As a final thought - don't solve this alone -

> get

> > > professional help starting with a

> > gastro-enterologist

> > > (one with alot of cf patients and patients with

> > > feeding issues), and get referrals to a good

> > feeding

> > > therapist.

> > >

> > > Best of luck to your friend and her daughter. If

> > > she'd like to correspond with me further about

> > this

> > > please pass on my e-mail address:

> > >

> > > pswyd@...

> > >

> > > hugs,

> > >

> > > C

> > > Mommy to Mick and Alli, 4 yo twins wcf

> > >

> > >

> > >

> > > --- Natalia Boguslawska

> > wrote:

> > > > Can you guys do me a favour.  I got an email

> > from a

> > > > lady that will not

> > > > give me her name, and she asks for support

> about

> > her

> > > > CF child that will

> > > > not eat a lot.  This has caused many problems.

> > > > She wants to hear some stories about other

> kids

> > that

> > > > don't want to eat,

> > > > some solutions, feeding tubes etc.

> > > > She really appreciates it.   I am flattered

> that

> > she

> > > > chose me to help

> > > > her, and take her request seriously.  So let's

> > share

> > > > our stories.  I

> > > > know that this is a huge problem for a lot of

> CF

> > > > kids, including the

> > > > non-kids like myself that has always had

> trouble

> > > > eating enough.

> > > >

> > > > Thanks everyone!!

> > > > Natalia

> > > > 24 w CF

> > > >

> > > >

> > >

> > >

>

=== message truncated ===

[Guest guest]

, apparently, she is legitimate; the cf lists have randomly had some

woman

from another nation pleading for help with her child's nutrition; my virus

scanner

caught it and warned me--every time--glad that this was not so here!

We do take our risks, throwing our souls and woes out into outer space--

by the way, look at the Moon and her little follower, Venus tonight, 89

miles

apart, I think the S.F.Chronicle said--gorgeous! Love, n

Re: Conway..eating issues, thanks!!

> Natalia,

>

> Oops! I didn't see the latest post from n and

> you regarding your friend. That'll teach me to read

> all my e-mails before posting.

>

> hugs,

>

> C

>

> --- linda conway wrote:

> > Thanks, Natalia

> >

> > I hope it's not all for naught. I saw n's post

> > about the possibility she's a hacker. I think the

> > likelihood is that she's legitimate, but you never

> > know.

> >

> > all my best,

> >

> > C

> > Mommy to Mick and Alli, 4 yo twins wcf

> >

> > --- Natalia Boguslawska wrote:

> > > Wow, thanks .

> > > Some amazing things is this post. That's great,

> > and

> > > I am sure is much

> > > much appreciated!!

> > >

> > > Natalia

> > > 24 w CF

> > >

> > >

> > > On Monday, February 23, 2004, at 04:07 PM, linda

> > > conway wrote:

> > >

> > > > Hi Natalia,

> > > >

> > > > I'll give you the benefit of my experience here.

> > > > My twins, Mick and Alli, were born at 25.5 weeks

> > > > gestation, and were on ventilators for several

> > > months

> > > > before they were diagnosed with CF and given the

> > > > appropriate treatments. Although this allowed my

> > > > son and daughter to be weaned from ventilators,

> > an

> > > > aspiration episode caused my daughter to go back

> > > on

> > > > for much longer.

> > > >

> > > > As a result, both children have oral aversions

> > > that

> > > > required a feeding tube, and on-going feeding

> > > therapy.

> > > > My son, who suffers less from reflux (but has it

> > > to

> > > > a small degree) does much better at feeding

> > > therapy

> > > > than my daughter, who throws up at least twice a

> > > day,

> > > > despite getting all the meds known to man

> > (except

> > > > propulsid, which is off the market). Both have

> > had

> > > > nissen fundoplications, which is a surgery

> > > designed to

> > > > tighten the sphincter between the stomach and

> > > > esophagus, to prevent vomitting. But, 's

> > > > loosened up, though not enough to warrant

> > another

> > > > surgery.

> > > >

> > > > I'm sure these are extreme cases, but their

> > > current

> > > > issues are more related to the reflux now than

> > the

> > > > extended stay on the ventilators. I would

> > suggest

> > > > that your friend see a gastro-enterologist about

> > > the

> > > > possibility of her daughter having reflux (it

> > can

> > > be

> > > > silent). She should also see a feeding

> > therapist,

> > > if

> > > > the situation is severe.

> > > >

> > > > Some parents are driven to distraction by their

> > > > children's picky eating habits, and you didn't

> > > > actually say how old she was. So, just in case

> > it

> > > > isn't a case of relux causing aversion, here are

> > > some

> > > > other reasons for a child not eating:

> > > >

> > > > 1. She's teething. Infants and toddlers often

> > lose

> > > > their appetites when they're teething. It can be

> > a

> > > > challenge to get them to eat anything at this

> > > time.

> > > > Fortunately, as their teeth grow in and the

> > > discomfort

> > > > leaves, they grow out of this. Your pediatrician

> > > can

> > > > help with this one.

> > > >

> > > > 2. She has some kind of tactile sensitivity.

> > Many

> > > > children who have undergone alot of procedures

> > > where

> > > > they get pricked and prodded a great deal (and

> > cf

> > > > kids fall into this category), become highly

> > > > sensitized to textures and touch. This can even

> > > > mean the textures and temperatures in food! A

> > > > good feeding therapist would help here.

> > > >

> > > > 3. The normal range of pickiness found in some

> > > > children. I was extremely picky as a child,

> > though

> > > > there were some foods I particularly liked, most

> > > would

> > > > make me gag - green vegetables, spaghetti sauce.

> > > This

> > > > can be especially worrisome for a cf child.

> > > Usually,

> > > > over time, these children start developing more

> > > > tastes for different foods - I certainly did!

> > ;-)

> > > > Just keep giving her the foods she likes (even

> > if

> > > > it's only one kind at first) and continue

> > > introducing

> > > > new foods. Also, re-introduce foods she didn't

> > > like

> > > > before, because she may change her mind about

> > them

> > > > later. NEVER EVER force food on her, and always

> > > make

> > > > the experience pleasant and fun.

> > > >

> > > > Surgery (getting a mic-key button in this case)

> > > > is always the last resort, but if her child is

> > > > dangerously close to malnutrition and severely

> > > > underweight, it may be the best solution for her

> > > now.

> > > > She can deal with the feeding issues at the same

> > > time

> > > > she is getting well-nourished with the tube.

> > > >

> > > > As a final thought - don't solve this alone -

> > get

> > > > professional help starting with a

> > > gastro-enterologist

> > > > (one with alot of cf patients and patients with

> > > > feeding issues), and get referrals to a good

> > > feeding

> > > > therapist.

> > > >

> > > > Best of luck to your friend and her daughter. If

> > > > she'd like to correspond with me further about

> > > this

> > > > please pass on my e-mail address:

> > > >

> > > > pswyd@...

> > > >

> > > > hugs,

> > > >

> > > > C

> > > > Mommy to Mick and Alli, 4 yo twins wcf

> > > >

> > > >

> > > >

> > > > --- Natalia Boguslawska

> > > wrote:

> > > > > Can you guys do me a favour. I got an email

> > > from a

> > > > > lady that will not

> > > > > give me her name, and she asks for support

> > about

> > > her

> > > > > CF child that will

> > > > > not eat a lot. This has caused many problems.

> > > > > She wants to hear some stories about other

> > kids

> > > that

> > > > > don't want to eat,

> > > > > some solutions, feeding tubes etc.

> > > > > She really appreciates it. I am flattered

> > that

> > > she

> > > > > chose me to help

> > > > > her, and take her request seriously. So let's

> > > share

> > > > > our stories. I

> > > > > know that this is a huge problem for a lot of

> > CF

> > > > > kids, including the

> > > > > non-kids like myself that has always had

> > trouble

> > > > > eating enough.

> > > > >

> > > > > Thanks everyone!!

> > > > > Natalia

> > > > > 24 w CF

> > > > >

> > > > >

> > > >

> > > >

> >

> === message truncated ===

>

>

>

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

> 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]

n,

We caught that! It was beautiful! I'm so glad the

weather was better last Monday than it was yesterday

or today.

--- n Rojas wrote:

> , apparently, she is legitimate; the cf lists

> have randomly had some

> woman

> from another nation pleading for help with her

> child's nutrition; my virus

> scanner

> caught it and warned me--every time--glad that this

> was not so here!

> We do take our risks, throwing our souls and woes

> out into outer space--

> by the way, look at the Moon and her little

> follower, Venus tonight, 89

> miles

> apart, I think the S.F.Chronicle said--gorgeous!

> Love, n

> Re: Conway..eating

> issues, thanks!!

>

>

> > Natalia,

> >

> > Oops! I didn't see the latest post from n and

> > you regarding your friend. That'll teach me to

> read

> > all my e-mails before posting.

> >

> > hugs,

> >

> > C

> >

> > --- linda conway wrote:

> > > Thanks, Natalia

> > >

> > > I hope it's not all for naught. I saw n's

> post

> > > about the possibility she's a hacker. I think

> the

> > > likelihood is that she's legitimate, but you

> never

> > > know.

> > >

> > > all my best,

> > >

> > > C

> > > Mommy to Mick and Alli, 4 yo twins wcf

> > >

> > > --- Natalia Boguslawska

> wrote:

> > > > Wow, thanks .

> > > > Some amazing things is this post. That's

> great,

> > > and

> > > > I am sure is much

> > > > much appreciated!!

> > > >

> > > > Natalia

> > > > 24 w CF

> > > >

> > > >

> > > > On Monday, February 23, 2004, at 04:07 PM,

> linda

> > > > conway wrote:

> > > >

> > > > > Hi Natalia,

> > > > >

> > > > > I'll give you the benefit of my experience

> here.

> > > > > My twins, Mick and Alli, were born at 25.5

> weeks

> > > > > gestation, and were on ventilators for

> several

> > > > months

> > > > > before they were diagnosed with CF and given

> the

> > > > > appropriate treatments. Although this

> allowed my

> > > > > son and daughter to be weaned from

> ventilators,

> > > an

> > > > > aspiration episode caused my daughter to go

> back

> > > > on

> > > > > for much longer.

> > > > >

> > > > > As a result, both children have oral

> aversions

> > > > that

> > > > > required a feeding tube, and on-going

> feeding

> > > > therapy.

> > > > > My son, who suffers less from reflux (but

> has it

> > > > to

> > > > > a small degree) does much better at feeding

> > > > therapy

> > > > > than my daughter, who throws up at least

> twice a

> > > > day,

> > > > > despite getting all the meds known to man

> > > (except

> > > > > propulsid, which is off the market). Both

> have

> > > had

> > > > > nissen fundoplications, which is a surgery

> > > > designed to

> > > > > tighten the sphincter between the stomach

> and

> > > > > esophagus, to prevent vomitting. But,

> 's

> > > > > loosened up, though not enough to warrant

> > > another

> > > > > surgery.

> > > > >

> > > > > I'm sure these are extreme cases, but their

> > > > current

> > > > > issues are more related to the reflux now

> than

> > > the

> > > > > extended stay on the ventilators. I would

> > > suggest

> > > > > that your friend see a gastro-enterologist

> about

> > > > the

> > > > > possibility of her daughter having reflux

> (it

> > > can

> > > > be

> > > > > silent). She should also see a feeding

> > > therapist,

> > > > if

> > > > > the situation is severe.

> > > > >

> > > > > Some parents are driven to distraction by

> their

> > > > > children's picky eating habits, and you

> didn't

> > > > > actually say how old she was. So, just in

> case

> > > it

> > > > > isn't a case of relux causing aversion, here

> are

> > > > some

> > > > > other reasons for a child not eating:

> > > > >

> > > > > 1. She's teething. Infants and toddlers

> often

> > > lose

> > > > > their appetites when they're teething. It

> can be

> > > a

> > > > > challenge to get them to eat anything at

> this

> > > > time.

> > > > > Fortunately, as their teeth grow in and the

> > > > discomfort

> > > > > leaves, they grow out of this. Your

> pediatrician

> > > > can

> > > > > help with this one.

> > > > >

> > > > > 2. She has some kind of tactile sensitivity.

> > > Many

> > > > > children who have undergone alot of

> procedures

> > > > where

> > > > > they get pricked and prodded a great deal

> (and

> > > cf

> > > > > kids fall into this category), become highly

> > > > > sensitized to textures and touch. This can

> even

> > > > > mean the textures and temperatures in food!

> A

> > > > > good feeding therapist would help here.

> > > > >

> > > > > 3. The normal range of pickiness found in

> some

> > > > > children. I was extremely picky as a child,

> > > though

> > > > > there were some foods I particularly liked,

> most

> > > > would

> > > > > make me gag - green vegetables, spaghetti

> sauce.

> > > > This

> > > > > can be especially worrisome for a cf child.

> > > > Usually,

> > > > > over time, these children start developing

> more

> > > > > tastes for different foods - I certainly

> did!

> > > ;-)

> > > > > Just keep giving her the foods she likes

> (even

> > > if

> > > > > it's only one kind at first) and continue

> > > > introducing

>

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