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Sara,

The additions product can be found at www.nestleclinicalnutrition.com

<http://www.nestleclinicalnutrition.com/> . It was one of the foods they had the

parents try at the CF Parents day at the ZOO. The problem is the cans are rather

large for a 21 month old and their current stock says it expires Jun-04. I’m

not sure we would go through 4 cans before June 04.

is in the 3rd percentile for weight and height. So we want to do

something new to get him eating. So far his preferred diet is “yogurt, peanut

butter and chicken nuggets†He is adverse to trying anything new. But we are

working on it slowly.

He currently has a bug and is on augmenten. We’ve also upped his

Pulmicort/Albuteral treatments from 2 a day to 4 per day. If he is not better by

Friday, the docs said we should start Tobi. I have to check the stuff we have in

the fridge to make sure it has not expired.

The oral syringes from Kendall aren’t bad except we order the 3ml and the

augmenten is more then 3ml so we end up using 2. Plus I miss the bottle

toppers, all of ours have reached their usable life.

If you want to split a case or are interested in just 1 can let me know. I drive

past your town all the time.

Your idea for a supply list to new parents is not bad. We should give are list

to the Nurse Coordinators or maybe just circulate it with the CF parents groups.

Mike V.

21m w/cf, Micaela 4 years w/attitude

_____

From: dwson2

Sent: Thursday, November 06, 2003 12:07 PM

To: cfparents

Subject: Re: Price Watcher List

We get our Exacta-med syringes from Baxa corp, but they are almost

$.27 a piece.

What is Nestle AdditionsFood additive? We might be interested in

splitting this with you. Is it like Scandishake or Scandical?

We get our medicine cups from Sams too.

We buy Pediasure at Walgreens. Not cheap, but they carry the fiber

ones.

Thanks for the info on the Bubbles the Fish mask and Control III.

We want to get a mask but our home health care company says they do

not carry it. I will just order one.

It is almost as if someone needs to give a parent of a newly

diagnosed cf child a supplies list, just like they do when you start

school each year. It is so hard to track all of this stuff down on

your own. So much trial and error.

Thanks for the great info. I will pass on your e-mail to my

husband. I know you guys met at the CFF event. He doesn't post on

the list, but reads the digests occasionally.

How is your son doing?

Sara - mommy of Zach 21 months soon

> I had an idea that as a group we should try to maintain a price

list of

> common things we need to purchase.

>

> Since my son is young, I can list the items that I'm interested in

finding

> the best price on, and where I last purchased them. Most of the

items I'm

> listing below are not covered by my insurance.

>

> Would anyone else care to add to or update it? Is there something

else out

> there that makes your life and your child's life easier.

>

>

> Oral Syringes

>

> Exacta-med - I can't find these at a good price

> Children's Hospital St. Louis - $.25 a piece

>

> Kendall Mono Jet - 3 ML oral syringes with tip cap

> Purchased from: Health Related Products

> 500 per case = about $.12

>

> Medicine Cups * Used for apple sauce and enzymes

>

> 2 OZ cups Sam's Club Store - Lids are also available

>

> Nestle Additions

> Food additive:

> ~ $100 for a case of 4 cans direct from Nestle

>

> ~$38 plus shipping from Apria

>

> I'd like to order from Nestle and split the case with

another

> family or two - Near St. Louis

>

> Pedi-a-Sure

>

> We purchased at our local Target until they stopped

carrying it

> 6 Cans - at about $1.65 per can

>

> Nebulizers

>

> Pari-ProNeb Ultra - 5 year warranty

> www.americanallergysupply.com

<http://www.americanallergysupply.com/>

> $94.90

>

> Pari-ProNeb Ultra - 3 year warranty

> www.americanallergysupply.com

<http://www.americanallergysupply.com/>

> $88.90

> http://www.respertise.com/pronebultra.html $98.25

> www.ebay.com <http://www.ebay.com/> - Some have been listed New

in Box for

> around $50

>

> Pari-ProNeb Filters - Set of 5

> www.americanallergysupply.com

> <http://www.americanallergysupply.com/> $15.00

>

>

> Nebulizer Kits

>

> *I only use Pari Pro Neb LC

> Pari ProNeb LC -

> www.americanallergysupply.com

<http://www.americanallergysupply.com/>

> $14.90 (They've never asked for a script)

> http://www.cfservicespharmacy.com/about_cf_services/price_list/

$11.00

> (Requires a Script)

> Grandma Bev's Pharmacy $11.00

>

>

> Nebulizer Mask

>

> Bubbles the fish

> www.americanallergysupply.com

> <http://www.americanallergysupply.com/> $2.00

> http://www.respertise.com/bubfisaerped.html $1.75

> Grandma Bev Pharmacy $1.45

>

> Control III

>

> Grandma Bev's Pharmacy 240ML $15.45

>

>

> PT Cups

>

> I get them from Clinic - No Cost

>

>

>

>

>

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Mike V.

Zach is the 5th percentile for weight and 10th for height. He also

dislikes anything new. Luckily he is a vigorous eater and will eat

most things after he has properly rejected them a few times. He

just cultured PA and we started TOBI last night. I had never used a

nebulizer before and have been posting like mad for advice.

Luckily it went much better today than last night. I guess Zach has

decided the neb is no longer new so it is not worthy of his

rejection. He slept through the night which was a glorious event for

the whole family. Maybe he will do the same tonight.

I will discuss the Nestle stuff with . We also have a Nestle

plant in ville. I could see if we could purchase products

without the shipping costs.

Circulating a supply list at our clinics is a great idea. Maybe one

of the companies on the list would cover printing costs since they

are receiving free advertising??? Wishful thinking.

Sara

> > I had an idea that as a group we should try to maintain a price

> list of

> > common things we need to purchase.

> >

> > Since my son is young, I can list the items that I'm interested

in

> finding

> > the best price on, and where I last purchased them. Most of the

> items I'm

> > listing below are not covered by my insurance.

> >

> > Would anyone else care to add to or update it? Is there

something

> else out

> > there that makes your life and your child's life easier.

> >

> >

> > Oral Syringes

> >

> > Exacta-med - I can't find these at a good price

> > Children's Hospital St. Louis - $.25 a piece

> >

> > Kendall Mono Jet - 3 ML oral syringes with tip cap

> > Purchased from: Health Related Products

> > 500 per case = about $.12

> >

> > Medicine Cups * Used for apple sauce and enzymes

> >

> > 2 OZ cups Sam's Club Store - Lids are also available

> >

> > Nestle Additions

> > Food additive:

> > ~ $100 for a case of 4 cans direct from Nestle

> >

> > ~$38 plus shipping from Apria

> >

> > I'd like to order from Nestle and split the case

with

> another

> > family or two - Near St. Louis

> >

> > Pedi-a-Sure

> >

> > We purchased at our local Target until they stopped

> carrying it

> > 6 Cans - at about $1.65 per can

> >

> > Nebulizers

> >

> > Pari-ProNeb Ultra - 5 year warranty

> > www.americanallergysupply.com

> <http://www.americanallergysupply.com/>

> > $94.90

> >

> > Pari-ProNeb Ultra - 3 year warranty

> > www.americanallergysupply.com

> <http://www.americanallergysupply.com/>

> > $88.90

> > http://www.respertise.com/pronebultra.html $98.25

> > www.ebay.com <http://www.ebay.com/> - Some have been listed New

> in Box for

> > around $50

> >

> > Pari-ProNeb Filters - Set of 5

> > www.americanallergysupply.com

> > <http://www.americanallergysupply.com/> $15.00

> >

> >

> > Nebulizer Kits

> >

> > *I only use Pari Pro Neb LC

> > Pari ProNeb LC -

> > www.americanallergysupply.com

> <http://www.americanallergysupply.com/>

> > $14.90 (They've never asked for a script)

> > http://www.cfservicespharmacy.com/about_cf_services/price_list/

> $11.00

> > (Requires a Script)

> > Grandma Bev's Pharmacy $11.00

> >

> >

> > Nebulizer Mask

> >

> > Bubbles the fish

> > www.americanallergysupply.com

> > <http://www.americanallergysupply.com/> $2.00

> > http://www.respertise.com/bubfisaerped.html $1.75

> > Grandma Bev Pharmacy $1.45

> >

> > Control III

> >

> > Grandma Bev's Pharmacy 240ML $15.45

> >

> >

> > PT Cups

> >

> > I get them from Clinic - No Cost

> >

> >

> >

> >

> >

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