RE: negative pseudo test, after TOBI

[Guest guest]

Well, I am more than happy to report that just had a negative pseudo

throat culture, after his first postivie test, and 28 days of TOBI. We had

him tested a week after finishing the TOBI. On the eighth he will have been

off TOBI for 28 days and can begin another 28 days on TOBI - preventative.

I am not sure what all this means, but I am so thrilled to have had a

negative test - I hope the approach is working. I don't know if we will do

a third round of TOBI after this, as we take things day by day - but what a

wonderful feeling to get that call. I am so thankful. I am still awaiting

my genetic testing from my amnio 3 or 4 weeks ago. We should have these

results either the end of this week or next! I hope we are just as lucky

with our long awaited phone call, and that our new baby-boy-to-be is free of

cf!

Melinda - son 3 wcf and sister 26 wcf

[Guest guest]

That is SO wonderful, Melinda! Did you do any oral antibiotics as well, or

just the inhaled TOBI?

I'm waiting on pins and needles with you for your amnio results, and have

been sending good thoughts for a negative on CF for your second child.

mama to , 16 months with CF, and Kate, 3 years 4 months, no CF

>

> Reply-To: cfparents

> Date: Sun, 30 Dec 2001 20:28:33 -0700

> To: cfparents >

> Subject: RE: negative pseudo test, after TOBI

>

> Well, I am more than happy to report that just had a negative pseudo

> throat culture, after his first postivie test, and 28 days of TOBI. We had

> him tested a week after finishing the TOBI. On the eighth he will have been

> off TOBI for 28 days and can begin another 28 days on TOBI - preventative.

> I am not sure what all this means, but I am so thrilled to have had a

> negative test - I hope the approach is working. I don't know if we will do

> a third round of TOBI after this, as we take things day by day - but what a

> wonderful feeling to get that call. I am so thankful. I am still awaiting

> my genetic testing from my amnio 3 or 4 weeks ago. We should have these

> results either the end of this week or next! I hope we are just as lucky

> with our long awaited phone call, and that our new baby-boy-to-be is free of

> cf!

>

> Melinda - son 3 wcf and sister 26 wcf

>

[Guest guest]

We are also waiting with you. Lots of love coming you & your precious

families way. take care, time is aflying as it is.

Wonderful results !!!!

LOVE & HUGS< Grandmombev

RE: negative pseudo test, after TOBI

Well, I am more than happy to report that just had a negative pseudo

throat culture, after his first postivie test, and 28 days of TOBI. We had

him tested a week after finishing the TOBI. On the eighth he will have been

off TOBI for 28 days and can begin another 28 days on TOBI - preventative.

I am not sure what all this means, but I am so thrilled to have had a

negative test - I hope the approach is working. I don't know if we will do

a third round of TOBI after this, as we take things day by day - but what a

wonderful feeling to get that call. I am so thankful. I am still awaiting

my genetic testing from my amnio 3 or 4 weeks ago. We should have these

results either the end of this week or next! I hope we are just as lucky

with our long awaited phone call, and that our new baby-boy-to-be is free of

cf!

Melinda - son 3 wcf and sister 26 wcf

[Guest guest]

Way to go!!!!!!!!In our neck of the woods the Dr.'s like to keep the CF'ers

on TOBI through the winter months which is December through March.

from P.A.

[Guest guest]

That TOBI works miracles, doesn't it?

from P.A.

[Guest guest]

In a message dated 12/31/01 9:23:22 AM Central Standard Time,

melinda@... writes:

<< Yeah, I thought the whole cold ting was interesting too. It was totally

out

of character for him to justkeep getting sick, and sick, and sick, so I

finally took in in, and bam - PA. The doc said there had been a study in

the past year or so, on kids with cf, under the age of 6, who had positive

throat cultures for the 1st time. They did bronchs on all of them (I think

around 20 or so), and found the PA to only be in the throat of all but a

couple. They began treatment on all of them with the TOBI, and were able to

" eradicate " it in all but a couple, so that is the route we took. That is

why I am sharing this, so that it may help someone else out there that has

PA for the 1st tim >>

I hope we are still in that category because my oldest was 6 before she was

diagnosed but they use Collistin but now they are on Tobi Deb A

[Guest guest]

Thanks for sharing this Melinda. Your picture of how he gets numerous colds

is interesting -- even though he didn't have a cough and lungs were clear.

was sick with two nasty colds in two months and got so ill with the

second one, I was sure there was pseudo in there. The docs put him on

Zithromax without culturing him, though, and he got better. The next time

that happens I am going to take him in for a culture FIRST to see what is

going on...I hate the thought of missing PA and letting it get down into the

lungs. This approach makes a lot of sense -- doing inhaled TOBI to eradicate

the PA in the throat.

mama to 16 months w CF and 3 yo no CF

>

> Reply-To: cfparents

> Date: Mon, 31 Dec 2001 08:13:16 -0700

> To: cfparents >

> Subject: RE: negative pseudo test, after TOBI

>

> -

>

> We only did inhaled TOBI with no oral antibiotics. His doc seemed to think

> that he only had itin his throat, because he was a-symptomatic (no cough and

> clear lungs). It has seemed to work and he still has had no cough and clear

> lungs, so we will press on with more TOBI for now. I am just so thankful!

>

> The next time he get a cold, and another and another in the course of a few

> weeks, even though he may not seem to need medical attention, I will have

> him in for a culture, because that was 's reaction to the pseudo, and

> has been the picture of health since doing the TOBI.

>

> Melinda - son 3 wcf and sister 25 wcf

>

> [Melinda Pearson] RE: negative pseudo test, after TOBI

>>

>> Well, I am more than happy to report that just had a negative

> pseudo

>> throat culture, after his first postivie test, and 28 days of TOBI. We

> had

>> him tested a week after finishing the TOBI. On the eighth he will have

> been

>> off TOBI for 28 days and can begin another 28 days on TOBI -

> preventative.

>> I am not sure what all this means, but I am so thrilled to have had a

>> negative test - I hope the approach is working. I don't know if we will

> do

>> a third round of TOBI after this, as we take things day by day - but

> what a

>> wonderful feeling to get that call. I am so thankful. I am still

> awaiting

>> my genetic testing from my amnio 3 or 4 weeks ago. We should have these

>> results either the end of this week or next! I hope we are just as

> lucky

>> with our long awaited phone call, and that our new baby-boy-to-be is

> free of

>> cf!

>>

>> Melinda - son 3 wcf and sister 26 wcf

>>

[Guest guest]

-

We only did inhaled TOBI with no oral antibiotics. His doc seemed to think

that he only had itin his throat, because he was a-symptomatic (no cough and

clear lungs). It has seemed to work and he still has had no cough and clear

lungs, so we will press on with more TOBI for now. I am just so thankful!

The next time he get a cold, and another and another in the course of a few

weeks, even though he may not seem to need medical attention, I will have

him in for a culture, because that was 's reaction to the pseudo, and

has been the picture of health since doing the TOBI.

Melinda - son 3 wcf and sister 25 wcf

[Melinda Pearson] RE: negative pseudo test, after TOBI

>

> Well, I am more than happy to report that just had a negative

pseudo

> throat culture, after his first postivie test, and 28 days of TOBI. We

had

> him tested a week after finishing the TOBI. On the eighth he will have

been

> off TOBI for 28 days and can begin another 28 days on TOBI -

preventative.

> I am not sure what all this means, but I am so thrilled to have had a

> negative test - I hope the approach is working. I don't know if we will

do

> a third round of TOBI after this, as we take things day by day - but

what a

> wonderful feeling to get that call. I am so thankful. I am still

awaiting

> my genetic testing from my amnio 3 or 4 weeks ago. We should have these

> results either the end of this week or next! I hope we are just as

lucky

> with our long awaited phone call, and that our new baby-boy-to-be is

free of

> cf!

>

> Melinda - son 3 wcf and sister 26 wcf

>

[Guest guest]

-

Yeah, I thought the whole cold ting was interesting too. It was totally out

of character for him to justkeep getting sick, and sick, and sick, so I

finally took in in, and bam - PA. The doc said there had been a study in

the past year or so, on kids with cf, under the age of 6, who had positive

throat cultures for the 1st time. They did bronchs on all of them (I think

around 20 or so), and found the PA to only be in the throat of all but a

couple. They began treatment on all of them with the TOBI, and were able to

" eradicate " it in all but a couple, so that is the route we took. That is

why I am sharing this, so that it may help someone else out there that has

PA for the 1st time.

Melinda - son 3 wcf and sister 25 wcf

RE: negative pseudo test, after TOBI

>>

>> Well, I am more than happy to report that just had a negative

> pseudo

>> throat culture, after his first postivie test, and 28 days of TOBI. We

> had

>> him tested a week after finishing the TOBI. On the eighth he will have

> been

>> off TOBI for 28 days and can begin another 28 days on TOBI -

> preventative.

>> I am not sure what all this means, but I am so thrilled to have had a

>> negative test - I hope the approach is working. I don't know if we

will

> do

>> a third round of TOBI after this, as we take things day by day - but

> what a

>> wonderful feeling to get that call. I am so thankful. I am still

> awaiting

>> my genetic testing from my amnio 3 or 4 weeks ago. We should have

these

>> results either the end of this week or next! I hope we are just as

> lucky

>> with our long awaited phone call, and that our new baby-boy-to-be is

> free of

>> cf!

>>

>> Melinda - son 3 wcf and sister 26 wcf

>>

[Guest guest]

I hope so too! It looks promising!

Melinda -son 3 wcf and sister 25 wcf

Re: negative pseudo test, after TOBI

In a message dated 12/31/01 9:23:22 AM Central Standard Time,

melinda@... writes:

<< Yeah, I thought the whole cold ting was interesting too. It was

totally

out

of character for him to justkeep getting sick, and sick, and sick, so I

finally took in in, and bam - PA. The doc said there had been a study in

the past year or so, on kids with cf, under the age of 6, who had positive

throat cultures for the 1st time. They did bronchs on all of them (I

think

around 20 or so), and found the PA to only be in the throat of all but a

couple. They began treatment on all of them with the TOBI, and were able

to

" eradicate " it in all but a couple, so that is the route we took. That is

why I am sharing this, so that it may help someone else out there that has

PA for the 1st tim >>

I hope we are still in that category because my oldest was 6 before she

was

diagnosed but they use Collistin but now they are on Tobi Deb A

[Guest guest]

Good for you !!I`m glad for you all good luck

Jackie Mum of Sonny wcf

>

>Reply-To: cfparents

>To: cfparents >

>Subject: RE: negative pseudo test, after TOBI

>Date: Sun, 30 Dec 2001 20:28:33 -0700

>

>Well, I am more than happy to report that just had a negative pseudo

>throat culture, after his first postivie test, and 28 days of TOBI. We had

>him tested a week after finishing the TOBI. On the eighth he will have

>been

>off TOBI for 28 days and can begin another 28 days on TOBI - preventative.

>I am not sure what all this means, but I am so thrilled to have had a

>negative test - I hope the approach is working. I don't know if we will do

>a third round of TOBI after this, as we take things day by day - but what a

>wonderful feeling to get that call. I am so thankful. I am still awaiting

>my genetic testing from my amnio 3 or 4 weeks ago. We should have these

>results either the end of this week or next! I hope we are just as lucky

>with our long awaited phone call, and that our new baby-boy-to-be is free

>of

>cf!

>

>Melinda - son 3 wcf and sister 26 wcf

>

[Guest guest]

Melinda,

I am so happy to hear of 's negative result.

Mom to Elliot

11mhs wcf

[Guest guest]

GREAT NEWS!!

LOVE & HUGS, GrandmomBEV

Re: negative pseudo test,

after TOBI

Melinda,

I am so happy to hear of 's negative result.

Mom to Elliot

11mhs wcf

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