RE: cultured PA for the first time--help!

[Guest guest]

Hang in there, . Although I don't have any personal experience

with PA (yet) as my daughter just turned 1, and she cultured Staph, the

statistics show that 30% of people with CF culture PA at 1 year of age,

and I believe the number is in the 40% range by 3. So Ashton having it

is by no means unusual or indicative of anything else. Plus, they've

gotten pretty dang good at eradicating PA from kids' lungs.

Take care- I'll be thinking of you guys...

Elias

cultured PA for the first time--help!

I am in tears as I type this. Unbelieveable. My son, Ashton,

cultured PA for the first time ever. He has never had any lungs

problems, EVER. We only do the vest for preventive care. He doesn't

cough at all. How can this happen? I just don't get it. I though

you had to have a lot of mucus built up to " Catch " the PA.

So we are starting Tobi tonight. He has never used a nebulizer

before. He is almost 3--anyone have some tips or advice for us? How

can I get him to use the mouthpiece? Poor kid is still sick from the

rotavirus and now this. I am just waiting for an asteroid to hit my

house.

mom to Ashton, almost 3

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

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.

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

[Guest guest]

,

Don't let this worry you too much. That is untrue that one has to

have a lot of mucous built up to get Pa. Our 18 month-old Abby has

cultured it intermittently since she was diagnosed. Each time we

pounded it with Tobi. So far she hasn't cultured it in several

months. She had a bronch in July which revealed no Pa in her lungs

although she cultured it via throat swab. The doctor remarked that

her airways were " pristine " . She is at the top of the growth charts

and has never had a cough. She has been sick less than our 2 non-cf

girls since her diagnosis at 5 months of age. Only a couple of minor

typical colds. Each time she has beat it on her own without and

major meds (just a round on Augmentin <oral antibiotic>). I can give

you plenty of advice on how to administer the Tobi but first try it

on your own how the doc instructed. I recommend a good video with a

lot of kids singing (turned up good and loud) and as little dialogue

as possible. Wiggles are good as well as KidSongs.

I've already been through all the worrying about Pa so you don't have

to. I've read about it until my eyes have popped out. They just

need to hammer it hard in order to prevent or at least delay the Pa

that doesn't leave (mucoid). When they kill it out this time (they

probably will) you may inquire about azythromycin (Zythromax) which

destabilizes Pa and helps to keep it from setting up shop. Abby is a

bit young for it but the next time she cultures it her doc said he

may try it. It has anti-inflammatory properties that make it work

somehow.

Good Luck,

Joe

> I am in tears as I type this. Unbelieveable. My son, Ashton,

> cultured PA for the first time ever. He has never had any lungs

> problems, EVER. We only do the vest for preventive care. He

doesn't

> cough at all. How can this happen? I just don't get it. I though

> you had to have a lot of mucus built up to " Catch " the PA.

>

> So we are starting Tobi tonight. He has never used a nebulizer

> before. He is almost 3--anyone have some tips or advice for us?

How

> can I get him to use the mouthpiece? Poor kid is still sick from

the

> rotavirus and now this. I am just waiting for an asteroid to hit

my

> house.

>

> mom to Ashton, almost 3

[Guest guest]

Well, the longest-lived cf patients have it to, and although it can cause lung

damage some do recover from it; I should have saved a web-site I saw on

this last evening; they categorised it: 1) never had it; 2)had it, but it could

not be found after one year and did not recur for another year; 3) chronic

presence with or without evident bronchiectasis (airway damage). I have

it; my adult wcf has it; we are still here at 66 and 38, and " the kid " has had

it since age four! Highest hopes, n Rojas, wcf, mom of 2 carriers and

one wcf

cultured PA for the first time--help!

I am in tears as I type this. Unbelieveable. My son, Ashton,

cultured PA for the first time ever. He has never had any lungs

problems, EVER. We only do the vest for preventive care. He doesn't

cough at all. How can this happen? I just don't get it. I though

you had to have a lot of mucus built up to " Catch " the PA.

So we are starting Tobi tonight. He has never used a nebulizer

before. He is almost 3--anyone have some tips or advice for us? How

can I get him to use the mouthpiece? Poor kid is still sick from the

rotavirus and now this. I am just waiting for an asteroid to hit my

house.

mom to Ashton, almost 3

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

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.

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

[Guest guest]

,

wipe the tears away and calm down. I know it sounds very scary that he has

cultured PA but it is not the end of the universe. PA is the most common bug

for people with CF to get and you have managed to dodge this for 3 whole years

( had it already at dx - 9 months and cultured to continually until this

past October) If he won't keep the mouthpeice in his mouth, order a ped mask

for the neb. Pari makes cute fish face masks and I think maybe some other

styles. When you are waiting for the mask, you can try to do it as a " blow by "

just put it in front of his face and keep it there (OK you may have to chase his

face around a bit but it is better than not getting it at all)

Ok, excuse me I have to find the soapbox..................oh, here it

is.............

PLEASE ask the docs to monitor his Tobi levels!!!!!!!!!!!!!!!!!!!!

When you ask for this they will tell you something to the effect that " it is no

going into his blood stream so, it will not be a problem...... " You tell them.

" I want it anyway! how do you think oxygen gets into his blood, it is inhaled!

so is Tobi! Keep and eye on his levels!!!!! "

This is my big thing because the tobi can really cause some problems for people,

especially kids under 6. it is approved for 6 and up not really little ones.

that said, my daughter has been on it since she was 2 and all is well. However,

when the doc put her on it, we both agreed to check the levels. It was a good

thing too, because the levels got very elevated and we had to cut the dose in

half. otherwise she could have had SERIOUS complications.

Let me step down off this box now............

I do not want to scare you about the med, but it is important, and most docs do

not even think of it.

mom of 5 with CF and a boy on the way

cultured PA for the first time--help!

I am in tears as I type this. Unbelieveable. My son, Ashton,

cultured PA for the first time ever. He has never had any lungs

problems, EVER. We only do the vest for preventive care. He doesn't

cough at all. How can this happen? I just don't get it. I though

you had to have a lot of mucus built up to " Catch " the PA.

So we are starting Tobi tonight. He has never used a nebulizer

before. He is almost 3--anyone have some tips or advice for us? How

can I get him to use the mouthpiece? Poor kid is still sick from the

rotavirus and now this. I am just waiting for an asteroid to hit my

house.

mom to Ashton, almost 3

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

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.

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

[Guest guest]

,

I know exactly what you are feeling, I felt the same way just this past

October. My son cultured PA for the first time. He was quite

ill and had to be hospitalized for 10 on IV tobi. He has been on

inhaled tobi since and his last two cultures have been clear. You will

get the thru this. It is all the firsts that are hard. Think back to

when you first found out that your son has CF. You probably thought " I

can't believe this, I don't think I can handle it. " And some more of

the same I am sure. But you did get thru it, you are living it each day

and are still here, like we all are, plugging away as best we can, some

days are better than others. We are special people, we are the " chosen

ones! " You will get thru this.

A huge hug is being sent your way from me!!

Cheryl, mom to 3 boys, Zac 8 yrs. wocf, Jake 3 yrs. wocf, Matty 2 yrs.

wcf (cultured PA for the first time in October/03)

cultured PA for the first time--help!

I am in tears as I type this. Unbelieveable. My son, Ashton,

cultured PA for the first time ever. He has never had any lungs

problems, EVER. We only do the vest for preventive care. He doesn't

cough at all. How can this happen? I just don't get it. I though

you had to have a lot of mucus built up to " Catch " the PA.

So we are starting Tobi tonight. He has never used a nebulizer

before. He is almost 3--anyone have some tips or advice for us? How

can I get him to use the mouthpiece? Poor kid is still sick from the

rotavirus and now this. I am just waiting for an asteroid to hit my

house.

mom to Ashton, almost 3

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

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.

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

[Guest guest]

Hi ,

I can relate to your experience. I remember when they told me that

he cultured for PA I said nooooooooooooo. He had been doing so

well. They treated my son, Jordan, aggresively and we haven't

cultured for it since. He used the fish mask for the Tobi neb and

it worked fine. He has used the fish mask for all neb meds even in

the hospital. Jordan is 11yrs old and has PCD. His treatments are

patterned after CF minus the digestive problems and add in the

ears. Hope Ashton is feeling better soon and that the Tobi kicks

the bug to the curb.

Kay

> ,

>

> I know exactly what you are feeling, I felt the same way just this

past

> October. My son cultured PA for the first time. He was

quite

> ill and had to be hospitalized for 10 on IV tobi. He has been on

> inhaled tobi since and his last two cultures have been clear. You

will

> get the thru this. It is all the firsts that are hard. Think

back to

> when you first found out that your son has CF. You probably

thought " I

> can't believe this, I don't think I can handle it. " And some more

of

> the same I am sure. But you did get thru it, you are living it

each day

> and are still here, like we all are, plugging away as best we can,

some

> days are better than others. We are special people, we are

the " chosen

> ones! " You will get thru this.

>

> A huge hug is being sent your way from me!!

> Cheryl, mom to 3 boys, Zac 8 yrs. wocf, Jake 3 yrs. wocf, Matty 2

yrs.

> wcf (cultured PA for the first time in October/03)

>

> cultured PA for the first time--help!

>

> I am in tears as I type this. Unbelieveable. My son, Ashton,

> cultured PA for the first time ever. He has never had any lungs

> problems, EVER. We only do the vest for preventive care. He

doesn't

> cough at all. How can this happen? I just don't get it. I though

> you had to have a lot of mucus built up to " Catch " the PA.

>

> So we are starting Tobi tonight. He has never used a nebulizer

> before. He is almost 3--anyone have some tips or advice for us?

How

> can I get him to use the mouthpiece? Poor kid is still sick from

the

> rotavirus and now this. I am just waiting for an asteroid to hit

my

> house.

>

> mom to Ashton, almost 3

>

>

>

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

> 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.

>

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

>

>

>

>

>

>

>

[Guest guest]

Dear ,

Ddon't panic! Ashton will be OK. This just shows us that PA can rear its nasty

head with no symptoms. Its good they are treating it. He seems a little young

for the mouthpiece. How did that go? If he had trouble you may want to try

getting him a mask. They have masks that fit the pari nebs, ask Grandmom Bev,

they have them all. I hope you're feeling better about this by now. My

daughter cultured PA at 2 and she is doing great at 20. Actually by some

miracle she hasn't cultured it for a long time now. It's been since she was 13.

We don't know why and it might still be hiding somewhere but it hasn't shown up

even on bronch cultures.

You're in my special thoughts and sending good vibes, Ashton will be OK!

love,

M

[Guest guest]

My daughter is 3 and we don't use the mouth piece we have a mask by pari

that looks like a fish - it just attaches onto the neb. Good luck.

* Robin

[Guest guest]

Your very smart. I have been told & also been in clinical sessions where I

heard that this also does a great job of helping keep the sinus' clear. -a

mask can be used at any level (age) & it DOES help the sinus. That is really

all that the " new sINUNEB IS , a PARI WITH THE MOUTH PIECE RESHAPED & YOU

HOLD AT THE NOSE , INSTEAD SOOOO IT GOES DIRECTLY TO THE SINUS first. :)

CLEVER GAL!!

bEST WISHES.

Love & hugs,

GRANDMOMBEV

RE: cultured PA for the first time--help!

My daughter is 3 and we don't use the mouth piece we have a mask by pari

that looks like a fish - it just attaches onto the neb. Good luck.

* Robin