Request for everyone - EATING ISSUES

[Guest guest]

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

[Guest guest]

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

>

>

[Guest guest]

I got one as well, and if this person's e-mail address is not on cfparents,

you may be being hacked. By responding, you open your computer up to

more of this. I would update my virus definitions and security levels for a

few days, get the patch for the Mydoom virus, and add at least one firewall;

this person is all over everywhere--NO NAME in my book means

NO RESPONSE; it might be wise to forward a copy of the e-mail to one of

our moderators, Albright.

ma8169@... Good luck, n Rojas; if says that

this is legitimate, then we can consider helping her IF she gives her

name, location, age of child, etc.

Request for everyone - EATING ISSUES

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.

------------------------------------

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[Guest guest]

Natalia,

Appetite can be stimulated by increasing intake B vitamins,

especially B12.

Also, the herb, horehound, is a nice choice for pwcf as it stimulates

appetite and helps expel respiratory mucus. Here's a page you can

read about horehound (be sure to copy both lines of the link if the

link has split into two lines).

http://www.healthwell.com/healthnotes.cfm?

contentid=2109003 & org=newhope

> 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