pseudomonas and staph

JENNYLEE202020 · Apr 22, 2010

my son is three, he has been growing pseudomonas and mrsa for 5 months now, we have been doing alot to fight it, nothing has helped yet =( i let my son hold his mask himself and put a movie on or what ever he want to watch, i sympathize with him when he fights me (wich is every time) and tell him i know its not fun, but he has to help his lungs, his lungs really need his help, that usually works good otherwise sometimes i have to give him something to look forward to after he finishes his treatments, my doctor told me every one wants something, figure out what it is and it will work like gold, for awhile i had to keep reeses in my house because i told him if he did his treatments like a good boy he could have one when he was done, find their favorite thing and use it to your advantage! =)

JENNYLEE202020 · Apr 22, 2010

my son is three, he has been growing pseudomonas and mrsa for 5 months now, we have been doing alot to fight it, nothing has helped yet =( i let my son hold his mask himself and put a movie on or what ever he want to watch, i sympathize with him when he fights me (wich is every time) and tell him i know its not fun, but he has to help his lungs, his lungs really need his help, that usually works good otherwise sometimes i have to give him something to look forward to after he finishes his treatments, my doctor told me every one wants something, figure out what it is and it will work like gold, for awhile i had to keep reeses in my house because i told him if he did his treatments like a good boy he could have one when he was done, find their favorite thing and use it to your advantage! =)

JENNYLEE202020 · Apr 22, 2010

my son is three, he has been growing pseudomonas and mrsa for 5 months now, we have been doing alot to fight it, nothing has helped yet =( i let my son hold his mask himself and put a movie on or what ever he want to watch, i sympathize with him when he fights me (wich is every time) and tell him i know its not fun, but he has to help his lungs, his lungs really need his help, that usually works good otherwise sometimes i have to give him something to look forward to after he finishes his treatments, my doctor told me every one wants something, figure out what it is and it will work like gold, for awhile i had to keep reeses in my house because i told him if he did his treatments like a good boy he could have one when he was done, find their favorite thing and use it to your advantage! =)

JENNYLEE202020 · Apr 22, 2010

my son is three, he has been growing pseudomonas and mrsa for 5 months now, we have been doing alot to fight it, nothing has helped yet =( i let my son hold his mask himself and put a movie on or what ever he want to watch, i sympathize with him when he fights me (wich is every time) and tell him i know its not fun, but he has to help his lungs, his lungs really need his help, that usually works good otherwise sometimes i have to give him something to look forward to after he finishes his treatments, my doctor told me every one wants something, figure out what it is and it will work like gold, for awhile i had to keep reeses in my house because i told him if he did his treatments like a good boy he could have one when he was done, find their favorite thing and use it to your advantage! =)

JENNYLEE202020 · Apr 22, 2010

my son is three, he has been growing pseudomonas and mrsa for 5 months now, we have been doing alot to fight it, nothing has helped yet =( i let my son hold his mask himself and put a movie on or what ever he want to watch, i sympathize with him when he fights me (wich is every time) and tell him i know its not fun, but he has to help his lungs, his lungs really need his help, that usually works good otherwise sometimes i have to give him something to look forward to after he finishes his treatments, my doctor told me every one wants something, figure out what it is and it will work like gold, for awhile i had to keep reeses in my house because i told him if he did his treatments like a good boy he could have one when he was done, find their favorite thing and use it to your advantage! =)

MaksNana · Apr 22, 2010

Hi Andrea,
I was just checking to see how Hadley has done doing her Tobi? I was just curious , does she do neb meds like xopenex or albuterol? The reason I am asking is I didn't know if she was scared of the airflow or had any experience before with neb meds.

I can tell you, Tobi stinks, I mean it really stinks. Makailyn cultured pseudo and staph dignoised at 2and half yrs old. She's been on Tobi every since. I would break a piece of peppermint off and give it to her before the Tobi to help with the taste of it. After that she never complained anymore, and they will get used to the smell of Tobi after awhile.

You are right about the Cipro and the Tobi used together for pseudo. Now, on the hypersaline, it is a strong tough one also. I don't know about how things change, but they would not start Makailyn on hts ,until she was at least 5yrs old,, because they didn't have enough studies on what it would do to anyone younger at that time. Also, I just realized that I asked you earlier if she did neb meds,,,, and if she does hts, then she must be doing nebs......<img src="i/expressions/face-icon-small-blush.gif" border="0">
So, I bet it is the smell and the taste of Tobi, and hts, is strong, and will make thier throat sore, until they get used to it. Makailyn can have strep throat and you wouldn't know it because her throat has toughen up.

You might could ask your doctor if Hadley could stay off the hts while she's on the Tobi.

I love this site because you learn so many things, and how things have changed and can change if you blink an eye.<img src="i/expressions/face-icon-small-wink.gif" border="0">

Good Luck sweetie, and I always send my prayers, Karla

MaksNana · Apr 22, 2010

Hi Andrea,
I was just checking to see how Hadley has done doing her Tobi? I was just curious , does she do neb meds like xopenex or albuterol? The reason I am asking is I didn't know if she was scared of the airflow or had any experience before with neb meds.

I can tell you, Tobi stinks, I mean it really stinks. Makailyn cultured pseudo and staph dignoised at 2and half yrs old. She's been on Tobi every since. I would break a piece of peppermint off and give it to her before the Tobi to help with the taste of it. After that she never complained anymore, and they will get used to the smell of Tobi after awhile.

You are right about the Cipro and the Tobi used together for pseudo. Now, on the hypersaline, it is a strong tough one also. I don't know about how things change, but they would not start Makailyn on hts ,until she was at least 5yrs old,, because they didn't have enough studies on what it would do to anyone younger at that time. Also, I just realized that I asked you earlier if she did neb meds,,,, and if she does hts, then she must be doing nebs......<img src="i/expressions/face-icon-small-blush.gif" border="0">
So, I bet it is the smell and the taste of Tobi, and hts, is strong, and will make thier throat sore, until they get used to it. Makailyn can have strep throat and you wouldn't know it because her throat has toughen up.

You might could ask your doctor if Hadley could stay off the hts while she's on the Tobi.

I love this site because you learn so many things, and how things have changed and can change if you blink an eye.<img src="i/expressions/face-icon-small-wink.gif" border="0">

Good Luck sweetie, and I always send my prayers, Karla

MaksNana · Apr 22, 2010

Hi Andrea,
I was just checking to see how Hadley has done doing her Tobi? I was just curious , does she do neb meds like xopenex or albuterol? The reason I am asking is I didn't know if she was scared of the airflow or had any experience before with neb meds.

I can tell you, Tobi stinks, I mean it really stinks. Makailyn cultured pseudo and staph dignoised at 2and half yrs old. She's been on Tobi every since. I would break a piece of peppermint off and give it to her before the Tobi to help with the taste of it. After that she never complained anymore, and they will get used to the smell of Tobi after awhile.

You are right about the Cipro and the Tobi used together for pseudo. Now, on the hypersaline, it is a strong tough one also. I don't know about how things change, but they would not start Makailyn on hts ,until she was at least 5yrs old,, because they didn't have enough studies on what it would do to anyone younger at that time. Also, I just realized that I asked you earlier if she did neb meds,,,, and if she does hts, then she must be doing nebs......<img src="i/expressions/face-icon-small-blush.gif" border="0">
So, I bet it is the smell and the taste of Tobi, and hts, is strong, and will make thier throat sore, until they get used to it. Makailyn can have strep throat and you wouldn't know it because her throat has toughen up.

You might could ask your doctor if Hadley could stay off the hts while she's on the Tobi.

I love this site because you learn so many things, and how things have changed and can change if you blink an eye.<img src="i/expressions/face-icon-small-wink.gif" border="0">

Good Luck sweetie, and I always send my prayers, Karla

MaksNana · Apr 22, 2010

Hi Andrea,
I was just checking to see how Hadley has done doing her Tobi? I was just curious , does she do neb meds like xopenex or albuterol? The reason I am asking is I didn't know if she was scared of the airflow or had any experience before with neb meds.

I can tell you, Tobi stinks, I mean it really stinks. Makailyn cultured pseudo and staph dignoised at 2and half yrs old. She's been on Tobi every since. I would break a piece of peppermint off and give it to her before the Tobi to help with the taste of it. After that she never complained anymore, and they will get used to the smell of Tobi after awhile.

You are right about the Cipro and the Tobi used together for pseudo. Now, on the hypersaline, it is a strong tough one also. I don't know about how things change, but they would not start Makailyn on hts ,until she was at least 5yrs old,, because they didn't have enough studies on what it would do to anyone younger at that time. Also, I just realized that I asked you earlier if she did neb meds,,,, and if she does hts, then she must be doing nebs......<img src="i/expressions/face-icon-small-blush.gif" border="0">
So, I bet it is the smell and the taste of Tobi, and hts, is strong, and will make thier throat sore, until they get used to it. Makailyn can have strep throat and you wouldn't know it because her throat has toughen up.

You might could ask your doctor if Hadley could stay off the hts while she's on the Tobi.

I love this site because you learn so many things, and how things have changed and can change if you blink an eye.<img src="i/expressions/face-icon-small-wink.gif" border="0">

Good Luck sweetie, and I always send my prayers, Karla

MaksNana · Apr 22, 2010

Hi Andrea,
 I was just checking to see how Hadley has done doing her Tobi? I was just curious , does she do neb meds like xopenex or albuterol? The reason I am asking is I didn't know if she was scared of the airflow or had any experience before with neb meds.
 
 I can tell you, Tobi stinks, I mean it really stinks. Makailyn cultured pseudo and staph dignoised at 2and half yrs old. She's been on Tobi every since. I would break a piece of peppermint off and give it to her before the Tobi to help with the taste of it. After that she never complained anymore, and they will get used to the smell of Tobi after awhile.
 
 You are right about the Cipro and the Tobi used together for pseudo. Now, on the hypersaline, it is a strong tough one also. I don't know about how things change, but they would not start Makailyn on hts ,until she was at least 5yrs old,, because they didn't have enough studies on what it would do to anyone younger at that time. Also, I just realized that I asked you earlier if she did neb meds,,,, and if she does hts, then she must be doing nebs......<img src="i/expressions/face-icon-small-blush.gif" border="0">
 So, I bet it is the smell and the taste of Tobi, and hts, is strong, and will make thier throat sore, until they get used to it. Makailyn can have strep throat and you wouldn't know it because her throat has toughen up.
 
 You might could ask your doctor if Hadley could stay off the hts while she's on the Tobi.
 
 I love this site because you learn so many things, and how things have changed and can change if you blink an eye.<img src="i/expressions/face-icon-small-wink.gif" border="0">
 
 Good Luck sweetie, and I always send my prayers, Karla

boman4802 · Apr 22, 2010

Thanks for the replies and continued encouragment! It really helps alot to know that we are not alone in this! I took Liza's advice and called and asked about her machine taking so long. They had the home medical service call me and they said that they had other complaints similar to mine with the Proneb Ultra II. They said that Hadley's doctor was now actually recommending a new machine which is the Invacare Stratos compact. They brought it out to me the next day!!! It has shortened the Tobi down to 30min and my old one was under warranty! THANKS so much Liza!!! She is doing much better with the shortened time and I feel alot better about it now. We have 6 days of Tobi left and I am so ready to be done with it! Praying for a good culture when we go back! Thanks again for all the support!

boman4802 · Apr 22, 2010

Thanks for the replies and continued encouragment! It really helps alot to know that we are not alone in this! I took Liza's advice and called and asked about her machine taking so long. They had the home medical service call me and they said that they had other complaints similar to mine with the Proneb Ultra II. They said that Hadley's doctor was now actually recommending a new machine which is the Invacare Stratos compact. They brought it out to me the next day!!! It has shortened the Tobi down to 30min and my old one was under warranty! THANKS so much Liza!!! She is doing much better with the shortened time and I feel alot better about it now. We have 6 days of Tobi left and I am so ready to be done with it! Praying for a good culture when we go back! Thanks again for all the support!

boman4802 · Apr 22, 2010

Thanks for the replies and continued encouragment! It really helps alot to know that we are not alone in this! I took Liza's advice and called and asked about her machine taking so long. They had the home medical service call me and they said that they had other complaints similar to mine with the Proneb Ultra II. They said that Hadley's doctor was now actually recommending a new machine which is the Invacare Stratos compact. They brought it out to me the next day!!! It has shortened the Tobi down to 30min and my old one was under warranty! THANKS so much Liza!!! She is doing much better with the shortened time and I feel alot better about it now. We have 6 days of Tobi left and I am so ready to be done with it! Praying for a good culture when we go back! Thanks again for all the support!

boman4802 · Apr 22, 2010

Thanks for the replies and continued encouragment! It really helps alot to know that we are not alone in this! I took Liza's advice and called and asked about her machine taking so long. They had the home medical service call me and they said that they had other complaints similar to mine with the Proneb Ultra II. They said that Hadley's doctor was now actually recommending a new machine which is the Invacare Stratos compact. They brought it out to me the next day!!! It has shortened the Tobi down to 30min and my old one was under warranty! THANKS so much Liza!!! She is doing much better with the shortened time and I feel alot better about it now. We have 6 days of Tobi left and I am so ready to be done with it! Praying for a good culture when we go back! Thanks again for all the support!

boman4802 · Apr 22, 2010

Thanks for the replies and continued encouragment! It really helps alot to know that we are not alone in this! I took Liza's advice and called and asked about her machine taking so long. They had the home medical service call me and they said that they had other complaints similar to mine with the Proneb Ultra II. They said that Hadley's doctor was now actually recommending a new machine which is the Invacare Stratos compact. They brought it out to me the next day!!! It has shortened the Tobi down to 30min and my old one was under warranty! THANKS so much Liza!!! She is doing much better with the shortened time and I feel alot better about it now. We have 6 days of Tobi left and I am so ready to be done with it! Praying for a good culture when we go back! Thanks again for all the support!

threebabies · Jun 9, 2010

Hi, my daughter 2.7 was culture with psuedo and staph just a few weeks ago. She was on two weeks of IV tobi and she continues her inhaled at home. I let my daughter watch TV or play with her toys while she is wearing the mask. She is usually good about it. Does anyone know if the Tobi will kill the bacteria completely?

--------------------------------
Gina, mother to Sophia(2.7 years), Peter and Gavin(11 months old) w/cf df508 and py849x

threebabies · Jun 9, 2010

Hi, my daughter 2.7 was culture with psuedo and staph just a few weeks ago. She was on two weeks of IV tobi and she continues her inhaled at home. I let my daughter watch TV or play with her toys while she is wearing the mask. She is usually good about it. Does anyone know if the Tobi will kill the bacteria completely?

--------------------------------
Gina, mother to Sophia(2.7 years), Peter and Gavin(11 months old) w/cf df508 and py849x

threebabies · Jun 9, 2010

Hi, my daughter 2.7 was culture with psuedo and staph just a few weeks ago. She was on two weeks of IV tobi and she continues her inhaled at home. I let my daughter watch TV or play with her toys while she is wearing the mask. She is usually good about it. Does anyone know if the Tobi will kill the bacteria completely?
 
 --------------------------------
 Gina, mother to Sophia(2.7 years), Peter and Gavin(11 months old) w/cf df508 and py849x

ymikhale · Jun 9, 2010

<div class="FTQUOTE"><begin quote>Originally posted by: threebabies

Hi, my daughter 2.7 was culture with psuedo and staph just a few weeks ago. She was on two weeks of IV tobi and she continues her inhaled at home. I let my daughter watch TV or play with her toys while she is wearing the mask. She is usually good about it. Does anyone know if the Tobi will kill the bacteria completely?

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

Gina, mother to Sophia(2.7 years), Peter and Gavin(11 months old) w/cf df508 and py849x</end quote></div>

You can never be really sure. In my dd's case it stopped showing up in culture after the first round of Tobi and she has not cultured it since (it has been a year). I hope that it is gone b/c it seems like it was a small colony but one can never be 100% sure

ymikhale · Jun 9, 2010

<div class="FTQUOTE"><begin quote>Originally posted by: threebabies

Hi, my daughter 2.7 was culture with psuedo and staph just a few weeks ago. She was on two weeks of IV tobi and she continues her inhaled at home. I let my daughter watch TV or play with her toys while she is wearing the mask. She is usually good about it. Does anyone know if the Tobi will kill the bacteria completely?

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

Gina, mother to Sophia(2.7 years), Peter and Gavin(11 months old) w/cf df508 and py849x</end quote>

You can never be really sure. In my dd's case it stopped showing up in culture after the first round of Tobi and she has not cultured it since (it has been a year). I hope that it is gone b/c it seems like it was a small colony but one can never be 100% sure

pseudomonas and staph

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