Bev

October 10, 2003

Howdeeee,

We are now out of ADEK & are being asked for the ABDEK.... ABDEK is

actually better as it has the vit B and also has more K in it. They don't

have the drops yet......The capsules are gel & folks are sticking a small

hole in & just squeezing in the babies mouth as they would some other syrup

or liquid med.. It is really easy. Patients also learn to swallow quicker

& adults love them as they are so easy to swallow too. They are VERY

available . & I was told yesterday the distributor is full. They do cost

very little more per bottle.

We GIVE the Multivit (your choice & do include ABDEK, & ADEK (when in

stock) with any monthly enzymes orders at no added cost -most insurance

companies wont pay for vitamins & no scripts are required. It just makes it

easier for folks not to have to worry about the vit.

We were told that the ADEK was backlogged & would be for some time. They

wouldn't say how long. They let this happen every so often. We have also

sent (upon request) the polyvisol .That is actually what my ERIN had & we

make a Vitamin E (water soluble -made for ERIN at first & so great , we

checked with DUKE & have been selling it for 18 years .It is EMULSA " E " '

Much less expensive & a great flavor too:)

You can call here at 1- .It is so easy..........ask anyone. The

gals in enrollment get your info , put into computer & your set.

Love to hear from you & yes we do have the ABDEK in stock.......will have

ADEK when they send. We are generally high on their filling orders ( we do

so much :) 7 ALL items for anyone.

Call me/us anytime.

LOVE & HUGS,

GrandmomBEV

Bev

I have a question for you and well really anyone out there that has kids

on ADEKS.

ARE YOU ALL HAVING TOUBLE GETTING THIS SCRIPT IN. I CAN NOT GET IT

ANYWHERE AROUND HERE.

Also Bev I thought about you and CF pharmacy. Do you all have any? How

do i get involved with your pharmacy if you do. My son has only one

dose left. I have been trying to get it for 3 weeks I guess that the

manufacturer is on back order. ARGGGGGGGG

I am going to try to find you all online and also get signed up for your

" informer " news letter. I loved the ones that you sent me.

Ashauna

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

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.

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

October 10, 2003

I have a couple of unopened boxes of the ADEKs liquid if some one wants them.

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

October 10, 2003

Dawn,

I would really be interested. My son takes the pediatric

solution. Is this what you have. I could even crush up the pills

though if not.

Please let me know of cost to you and I will send money your way

for them.

Thank you

Ashauna

* only if you are not using them. You will need them for your little

one two because they are not sounding like it is going to be available

for a while

October 10, 2003

We're not using the ADEK's anymore. We are using the glycobears from manatech

and a vitamin k pill three times a week instead. I would be happy to send them

to you for the cost of shipping. I will try to go to the post today or Monday

and let you know how much it is. Tell me you address please.

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

October 10, 2003

Dawn,

If nobody wants them I would love to have them to send to Venezuela.

I found I can send medicine and it won't cost me a whole lot of money

via FEDEX.

Thanks,

> I have a couple of unopened boxes of the ADEKs liquid if some one

wants them.

>

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

>

October 10, 2003

If you don't mind I could really use a bottle. Just let me know how much and I

will gladly pay for it and for shipping.

Katy

Mom to Austin 4 no CF & Piper 14 months w/CF

October 10, 2003

Katy , call & give the mailing info to CAROL . She will se it gets done

right away.

The toll free number is 1-. She is very Nice as well Has

been with us a long time. Works with all the compassion programs.. Takes

a very few minutes

LOVE & HUGS, grandmomBEv/ BEV

Re: Bev

If you don't mind I could really use a bottle. Just let me know how

much and I will gladly pay for it and for shipping.

Katy

Mom to Austin 4 no CF & Piper 14 months w/CF

October 14, 2003

Dear JULIE,

Oh my God !! that is a terrible place to be, knowing only part & fearing for

the worst. I know how you must feel. It isn't great either. I know it is

driving insane too. I do pray for all the best news & that they did

well in the roll over. My daughter Patti had that happen to her with 2 of

her sons in car. There were 2 teens were racing each other on the interstate

& one clipped her bumper zizzing in and out of cars they were passing . She

went along the guard rail (on an overpass, & then flipped & rolled ... they

totaled the van., were pulled out thru the broken windows. BUT they were

alright but, VERY shaken. It was in my name & insurance .(they couldn't

afford at the time) . The roll bars built into those vans( a Lumina) were

GREAT, as far as protecting them. I pray that is the same in this case. They

do make them pretty sturdy. I also hope by now , you all have heard more

info. AND it is better news. I am pleased to hear your leg is doing better

now. I am sure putting out the biggest requests of no big, or long lasting

scaring.

Please -----as you can-----let us know all is well That is what I am

praying for (oops-thinking about) you all.

LOVE & HUGS

GrandmomBEV

clinic check-up

Eilish had her 3 month clinic check up today. had to take her as

I tipped hot fat down my leg yesterday and it is agony. Anyhow, he went

with a list from me on what to do and ask. She is on Augmentin as she

has a bit of a head cold and he doesn't want it ending up as a chest

infection. Other than that her PFT's were fine and she had blood work

done to check all her levels which we will find out later. They also

tried to get a sputum sample seeing as she hasn't been in hsp for

15months, which is almost her 18month record. But because her cough is

completely dry we couldn't get anything. So we have the jar here and if

we manage at sometime to get something I can take it to work and get the

lab to pick it up from there.

So all in all a great visit. So that's it until January.

(Australia)

October 16, 2003

In a message dated 10/14/2003 5:47:08 AM Eastern Daylight Time,

scottie@... writes:

> know they are my OUT-laws but

> still I wouldn't want anything to happen to them for his sake and the

> kids.

>

Remember --- BLACK is slimming.............Just kidding...........everything

has a silver lining LOL

Rosemary in NY with 3 children (13, 10.6 and 6.6)

with CF. I have a dog named TOBI and have

coined the phrase " BREATHE DAMMIT "

October 20, 2003

You have that right. Sometimes it takes a while to find it tho :) have a

great day--week ahead.

LOVE, GRDMBEV

Re: Bev

In a message dated 10/14/2003 5:47:08 AM Eastern Daylight Time,

scottie@... writes:

> know they are my OUT-laws but

> still I wouldn't want anything to happen to them for his sake and the

> kids.

>

Remember --- BLACK is slimming.............Just kidding...........everything

has a silver lining LOL

Rosemary in NY with 3 children (13, 10.6 and 6.6)

with CF. I have a dog named TOBI and have

coined the phrase " BREATHE DAMMIT "

November 26, 2003

Oh gosh, I do pray she is better today. It is WED here 10:20am . That

is no fun for her. Its bad enough to be sick, and then not to be able to

enjoy her friends visit. I do hope all that changes today . Also hope

the mail gets thru .

LOVE & HUGS to you all

GrandmomBEV

Re: GALE

I mailed that card one week before she was supposed to go to the

hospital the first time. I wonder if the hospital hung on to them for

her or if it always takes ten days to get there.

I hope that the second card that I sent gets there before she goes home.

I am glad that the card cheered her. I'm sure that the hospital is

getting boring for her.

Gale

> > Oh I forgot to mention all her cultures and bronchoscopy came back

> > clear. So that's over 3 years PA free. Yippee.

> >

> > (Australia)

> >

December 6, 2003

OH...I love the ZOO.. have a great time (ooops , I guess you've already

been by the time your back reading this. ANYWAY-----I hope you DID have a

great time.

those payments(taxes) don't seem to unfair , considering the high cost of

the meds to start with.

At least your country is seeing that all are cared for .I like that

Best wishes & all my great thoughts are heading your family's way

That dinner outing sounds like it just HAD to a great evening. Is this the

group you all have been meeting with several times before?? I like that

idea. Great exchange of info too!!

love you all .

LOVE & HUGS,

GrandmoMBEV

health care in the States...

This is something that me and my mom were discussing last night. Let me

know what you guys think? Which do you think is more beneficial for

people with specific disease such as CF, where specialized care and

research is needed:

1. The Canadian 'free', all inclusive type care, where I feel I never

have much of a choice which doctor I see - and I think this makes

them lazy since no matter how bad a job they do, they are paid and I

have to see them

OR

2. the US system. Speaks for itself, where there seems to be more

choice.

I always wonder. I find the health care here aweful for specialties.

When you break a lef, hey its great. but otherwise I am not so

convinced.

December 7, 2003

Bev,

Yes is is the same group of people. We can exchange ideas, moan and

have a laugh. The zoo was good. It was with a 'special kids' charity

day. They got presents, really good ones in fact, food and

entertainment. So now we are all buggered and I cannot wait for 8pm,

kids bedtime.

health care in the States...

This is something that me and my mom were discussing last night. Let me

know what you guys think? Which do you think is more beneficial for

people with specific disease such as CF, where specialized care and

research is needed:

1. The Canadian 'free', all inclusive type care, where I feel I never

have much of a choice which doctor I see - and I think this makes

them lazy since no matter how bad a job they do, they are paid and I

have to see them

OR

2. the US system. Speaks for itself, where there seems to be more

choice.

I always wonder. I find the health care here aweful for specialties.

When you break a lef, hey its great. but otherwise I am not so

convinced.

December 7, 2003

HOWDEEee,

hehehehahaha, YES indeed , I bet you are all tuckered out. That is a big day

for all. MOM & DAD too:):)

I think that is such a grand idea of pairing up with some other couples, as

you say, can really talk to each others AND understand what's being

said:)

How nice that the kids got presents as well.I do hope that the wee siblings

also got a package too. I am sure they did. it makes for a fun day But I bet

each one (adults included) will sleep well after that day .

Stay well now---all of you . that darn virus is all over the world

too.........SOooooooooo Christmas is nearer & all MUST be well . those are

my " orders " -here. sure hope all will be " dobees " and do- be good while

staying well too!

LOVE & HUGS, grandmoMBEV

health care in the States...

This is something that me and my mom were discussing last night. Let me

know what you guys think? Which do you think is more beneficial for

people with specific disease such as CF, where specialized care and

research is needed:

1. The Canadian 'free', all inclusive type care, where I feel I never

have much of a choice which doctor I see - and I think this makes

them lazy since no matter how bad a job they do, they are paid and I

have to see them

OR

2. the US system. Speaks for itself, where there seems to be more

choice.

I always wonder. I find the health care here aweful for specialties.

When you break a lef, hey its great. but otherwise I am not so

convinced.

December 15, 2003

Bev,

Funny thing that happened. I dropped into my mums this morning before

clinic as I was dropping her in the city. Eilish had one of those

clingy dresses on. I thought gee it hugs her little cheeks so I patted

them and as usual (needs monitoring) Eilish was of to clinic without her

knickers(undies). Eilish has been known to go to school 'free as a

bird', but I thought we'd progressed to 'you must wear knickers'. So I

said to her poor Dr when he lifts your dress to listen to you

he'll loose his eyesight. Of course she wouldn't care less, but I did

call into the hsp. kiosk and luckily they had a pair, which ended up

being the most expensive knickers she's ever had. So this afternoon I

put a pair in my glove box for 'emergencies'.

Ah kids, were does that carefree attitude go.

December 15, 2003

hahahehe --I think that is one of the funniest things I have heard in a

long time. YES< DO PUT A PAIR IN THE GLOVE COMPARTMENT.. We'll have to

rename that to the knickers compartment..haha.

I bet they did charge you a small fortune.......They had you in a really

" needy " spot......But-------oh, that will be a tale you'll want in your

" baby book /memories book for her to have when she is all grown up. Thanks

for sharing. just thinking about makes me smile. Loved it.