Tune Up's ...who does them still

[Guest guest]

Hi

I was curious who's doctor is still Pro-Tune Up. This means when you start to

get run down or every 6 months, even w/o evidence of flare up, get a 2 -3

week course of IV antibiotics. This was a mainstay of Treatment 10 years ago but

has fallen out of favor. ....now docs want you to be really ill before

Treatment at most CF centers. I am curious which center still do TUNE-UPS like

us

older folks used to know....it was a routine to get IVs every 6 months or if

there was a big event coming up like vacation or a weeding or something( on

school

vacations ).

Please email me...I am curious.

Becki

YOUR FAVORITE LilGooberGirl

YOUNGLUNG EMAIL SUPPORT LIST

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http://groups.yahoo.com/group/InterstitialLung_Kids/

[Guest guest]

In a message dated 6/2/2003 4:47:23 AM Central Daylight Time,

MissGooberGirl@... writes:

> Becki

>

We have only do IV's ones for my oldest and that was because we could get rid

of the pseudomonas and it still didn't work because the pseudomonas is coming

from her sinus. I think being on IV's a lot can do damage to other organs

which scare me. When my oldest was on it they really watched her liver and it

was

high at time but it didn't change so they kept her on it. I notice it would

make her dizzy and she would fall easier. I was so glad when she got done with

that and I think I would think twice before I would let them do it again. Deb

A

[Guest guest]

Becki,

I don't think it is so much the Dr.'s but the insurance Co. a few years back I

had to fight the head Dr. of our hospital because they refused to pay for

's stay saying she was not very sick. Boy did he hear a thing or two from

me. But I know we have to fudge the papers the Dr. sends up to the floor so we

can be admitted because he knew how sick was and the insurance co. would

say she was not sick enough to go in. Does this make since? I just feel their

hands are tied and they are tied to money and if they don't follow the rules

then they don't get payed.

judy

mom to 19 1/2 years wcf

Tune Up's ...who does them still

Hi

I was curious who's doctor is still Pro-Tune Up. This means when you start to

get run down or every 6 months, even w/o evidence of flare up, get a 2 -3

week course of IV antibiotics. This was a mainstay of Treatment 10 years ago

but

has fallen out of favor. ....now docs want you to be really ill before

Treatment at most CF centers. I am curious which center still do TUNE-UPS like

us

older folks used to know....it was a routine to get IVs every 6 months or if

there was a big event coming up like vacation or a weeding or something( on

school

vacations ).

Please email me...I am curious.

Becki

YOUR FAVORITE LilGooberGirl

YOUNGLUNG EMAIL SUPPORT LIST

www.topica.com/lists/younglung

Pediatric Interstitial Lung Disease Society

http://groups.yahoo.com/group/InterstitialLung_Kids/

[Guest guest]

> > Becki

Just to let you know. I live in Knoxville and take my 16 month old

daughter to the cf clinic at Children's Hospital. Her doctor (Dr.

) and staff have actually been study the techniques for

dealing with cf in other countries. He actually mentioned to me

the " Danish " way of doing things a few weeks ago. Right before he

admitted my daughter for a preventative tune-up. So the answer to

your question is yes tune-ups are still done for preventative care. I

was a little unsure about it at first but know that it is all over I

am very happy that I took his advise. It is funny but Jaelyn really

had fun while she was in the hospital. She loves attention and she

got loads of it from all the nurses.

mom of Makenzie 6 w/o cf and Jaelyn 16 months w/cf

[Guest guest]

Nope we don't. Never have. has been over 3 years now without IV's.

Shes on Tobi, pulmozyme, and the Vest and doing well, the last time she got

sick she was treated with Augmentin duo and got better quickly, I think she

was just having a staph flare up.

love,

man I am posting alot today!

[Guest guest]

I think at our clinic it is still an option to have a tune up. But most of us

want to keep them out of the hospital because they can pick stuff up there too.

has been in for exacerbations 4 times-at Dx, about 8 months later, then

almost exactly 1 yr after dx, then about 5 months later. Up until last fall

she was followed monthly at CF clinic because weight has been such an issue, now

she is seen every other month. I do know that some kids still go in for a tune

up though, some more often than others, depending on their FEV's and PFT's.

Re: Tune Up's ...who does them still

Nope we don't. Never have. has been over 3 years now without IV's.

Shes on Tobi, pulmozyme, and the Vest and doing well, the last time she got

sick she was treated with Augmentin duo and got better quickly, I think she

was just having a staph flare up.

love,

man I am posting alot today!

[Guest guest]

In 16 1/2 years, we've only done IVs twice ... once for flare-up of an

infection and another time because we switched docs. FEV1 was in the

50s (per cent predicted) and the new doc thought the IVs might improve

the the PFTs. The IVs didn't make a difference in the latter case, but

the FEV1 did improve on its own about a year later. However, almost all

patients at our clinic are on oral or inhaled antibiotics on a

consistent basis.

M