Conway..eating issues, thanks!!

[Guest guest]

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.

>

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

>

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