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Re: Psuedonoma - Emma

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My 3 year old has has pseudo 3 times this year but last week had a broncoscopy

and yesterday also and neithre showed pseudo. After 6 mths of aggressive

treatment it worked, which is great. If you want to know what she used let me

know.

Psuedonoma

Hi I was looking for some help understanding Psuedonoma. Sydney

cultered for it and is now on tobi and zythromax. The drs say its ok

and not to worry but from what I read it seldom goes away and rapidly

deteriates the lungs. This is very scary for me but I am told that it

can go away and wont damage her lungs until it keeps coming back. I

am very confused. Also she has to have a barium swallow so we can

meet with the gi drs to fiqure out her reflux, she is still refluxing

even on Zantac. Is not as bad, what else can they do for it? other

meds? Please help me understand all of this. Thank you, Emma

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In a message dated 11/17/00 7:13:39 AM Eastern Standard Time,

blondie@... writes:

<<

>>

,

HI, Sydney, 14weeks, is taking tobi through the nebulizer and als

zithromax. Its only been 3 dyas but her cough seems to be a little better,

although now we are all coming dwn with a cold, so hopefully she wont get it.

Hope you are all well, Emma

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Hi

My daughter is 4 1/2 years old and has just cultured pseudo for the first

time. She had a wet cough that wouldn't shift and was given a bronchoscopy

which showed up pseudo. She was then given Tobramycin ivs for two weeks and

ceftaz (I think) ivs as well. Could you please tell me what they did for

your child?

Thank you

Psuedonoma

>

>

> Hi I was looking for some help understanding Psuedonoma. Sydney

> cultered for it and is now on tobi and zythromax. The drs say its ok

> and not to worry but from what I read it seldom goes away and rapidly

> deteriates the lungs. This is very scary for me but I am told that it

> can go away and wont damage her lungs until it keeps coming back. I

> am very confused. Also she has to have a barium swallow so we can

> meet with the gi drs to fiqure out her reflux, she is still refluxing

> even on Zantac. Is not as bad, what else can they do for it? other

> meds? Please help me understand all of this. Thank you, Emma

>

>

> eGroups Sponsor

>

>

> ***********************

> This is a secular list.

> ***********************

>

>

> PLEASE do not post religious emails to the list.

>

>

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

>

>

> 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.

>

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

>

>

> Our webpage is at http://www.eohio.net/malbright/cfparents.htm

>

> _________________________________________________

> Post message: cfparentsegroups

> Subscribe: cfparents-subscribeegroups

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,

Eilish was given inhaled Colistin and oral ciproxin tablets for three months,

then she cultured it again so she had it for another three months, then she has

just had another broncoscopy and it had gone (this was 2 weeks ago whilst in

hsp. for IV's) and then on Thursday just gone they did another bronc. to confirm

it had gone and it has. So we've come home with two more weeks on colistin and

ciproxin to doubly make sure. It was a great thing to be told that it has gone.

Eilish was funny when we told her that her pseudo. had gone, as although she is

only 3 we tell her all the names of the stuff and she can say pseudomonas. She

told her dr. that it had gone because she doesn't touch the pond water.

Good Luck

Psuedonoma

>

>

> Hi I was looking for some help understanding Psuedonoma. Sydney

> cultered for it and is now on tobi and zythromax. The drs say its ok

> and not to worry but from what I read it seldom goes away and rapidly

> deteriates the lungs. This is very scary for me but I am told that it

> can go away and wont damage her lungs until it keeps coming back. I

> am very confused. Also she has to have a barium swallow so we can

> meet with the gi drs to fiqure out her reflux, she is still refluxing

> even on Zantac. Is not as bad, what else can they do for it? other

> meds? Please help me understand all of this. Thank you, Emma

>

>

> eGroups Sponsor

>

>

> ***********************

> This is a secular list.

> ***********************

>

>

> PLEASE do not post religious emails to the list.

>

>

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

>

>

> 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.

>

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

>

>

> Our webpage is at http://www.eohio.net/malbright/cfparents.htm

>

> _________________________________________________

> Post message: cfparentsegroups

> Subscribe: cfparents-subscribeegroups

> Unsubscribe: cfparents-unsubscribeegroups

> List owner: cfparents-owneregroups

> _________________________________________________

>

> WE HAVE A CHAT PAGE!!!

> /chat/cfparents

> _________________________________________________

>

>

>

>

>

>

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Hello ,

was 9 months old when he first cultured psuedomonas, and the docs did

the same, 2 weeks of IV Tobramycin, Ceftaz and one other, I am not sure if it

was Pipercillin or Oxycillin at that time. He was just in for another tune

up in October, he is now 16 months old, and this time he cultured MRSA, so

now he gets Vancomycin with the other IV's, this trip though, he didnt

culture psuedo, seems like they play hide and seek with the docs, sometimes

they show up and other times they dont.

Hope all is well with your little girl.

, mommy of 4, , 15 with a much older mind, Caleb, 6 and a

kindergarten pro, finally, , 4 1/2 and the next famous artist, and

, 15months with CF and reflux and a beautiful smile and bright blue eyes

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,

Could you tell me what MRSA is as I haven't heard about it. Is it ANOTHER thing

to dread our kids getting or is it treatable.

Thanks

Re: Psuedonoma - Emma

Hello ,

was 9 months old when he first cultured psuedomonas, and the docs did

the same, 2 weeks of IV Tobramycin, Ceftaz and one other, I am not sure if it

was Pipercillin or Oxycillin at that time. He was just in for another tune

up in October, he is now 16 months old, and this time he cultured MRSA, so

now he gets Vancomycin with the other IV's, this trip though, he didnt

culture psuedo, seems like they play hide and seek with the docs, sometimes

they show up and other times they dont.

Hope all is well with your little girl.

, mommy of 4, , 15 with a much older mind, Caleb, 6 and a

kindergarten pro, finally, , 4 1/2 and the next famous artist, and

, 15months with CF and reflux and a beautiful smile and bright blue eyes

eGroups Sponsor

***********************

This is a secular list.

***********************

PLEASE do not post religious emails to the list.

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

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.

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

Our webpage is at http://www.eohio.net/malbright/cfparents.htm

_________________________________________________

Post message: cfparentsegroups

Subscribe: cfparents-subscribeegroups

Unsubscribe: cfparents-unsubscribeegroups

List owner: cfparents-owneregroups

_________________________________________________

WE HAVE A CHAT PAGE!!!

/chat/cfparents

_________________________________________________

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Hi, My name is Dana and I have a 10 1/2 yr daughter w/CF. 1 1/2 years

ago she was cultured with MRSA. It only shows up in her sputum. The

skin test have never been positive. And sometimes it doesn't show up

in the sputum. Until our last hospital visit she was i strict

isolation . They have started a new program that she is now in

Contact isolation. It gives her nore freedom in the hospital than to

be stuck in her room with the door closed . It is a staph that she

picked up in the hospital but we have many debates about it. She

apparently got it from the air and/or Dr carrying it. Thye don't want

to treat her for it because it is there but it doesn't affect her

infections. Kinda like she is a carrier of it .

She does pretty well . We do IV's about 1-2x a year and sinus

surgeries 4-6x a year and we are getting a G-Tube Nov 29.

Her web page is Jesicakes.homestead.com/jesicakes.html.

FFCF,

Dana

> ,

>

> Could you tell me what MRSA is as I haven't heard about it. Is it

ANOTHER thing to dread our kids getting or is it treatable.

>

> Thanks

>

> Re: Psuedonoma - Emma

>

>

> Hello ,

>

> was 9 months old when he first cultured psuedomonas, and

the docs did

> the same, 2 weeks of IV Tobramycin, Ceftaz and one other, I am

not sure if it

> was Pipercillin or Oxycillin at that time. He was just in for

another tune

> up in October, he is now 16 months old, and this time he cultured

MRSA, so

> now he gets Vancomycin with the other IV's, this trip though, he

didnt

> culture psuedo, seems like they play hide and seek with the docs,

sometimes

> they show up and other times they dont.

> Hope all is well with your little girl.

>

> , mommy of 4, , 15 with a much older mind, Caleb, 6

and a

> kindergarten pro, finally, , 4 1/2 and the next famous

artist, and

> , 15months with CF and reflux and a beautiful smile and

bright blue eyes

>

> eGroups Sponsor

>

>

> ***********************

> This is a secular list.

> ***********************

>

>

> PLEASE do not post religious emails to the list.

>

>

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

>

>

> 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.

>

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

>

>

> Our webpage is at http://www.eohio.net/malbright/cfparents.htm

>

> _________________________________________________

> Post message: cfparentsegroups

> Subscribe: cfparents-subscribeegroups

> Unsubscribe: cfparents-unsubscribeegroups

> List owner: cfparents-owneregroups

> _________________________________________________

>

> WE HAVE A CHAT PAGE!!!

> /chat/cfparents

> _________________________________________________

>

>

>

>

>

>

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Hello ,

MRSA stands for methicillin-resistant staph aureus, it means that the staph

is no longer resistant to the normal antibiotics, so they use Vancomycin to

fight it. According to the docs, the MRSA is present in about 20 % of the

population, but because not everyone lives with a cf child, not everyone

knows that they have it in their noses. It is considered to be contagious,

(I think) to other cfers, so will always have his own room whenever in

the hospital. Hope this helps. Take care.

, mommy of 4, , 15 with a much older mind, Caleb, 6 and a

kindergarten pro, finally, , 4 1/2 and the next famous artist, and

, 15months with CF and reflux and a beautiful smile and bright blue eyes

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