pseudomonas

mpax

New member
I would like to thank everyone for chiming in with their experiences. I am sure you all understand my fear being a parent to a newborn w/ CF and culturing PA already. I am really scared and I just cannot stop thinking about my boy's future and how uncertain it is. I know this is the wrong thing to do and I need to be strong for my son, my wife, and the rest of our family but I cannot stop obsessing over the negatives. I am also going out of my mind trying to learn about PA. CF has turned our lives upsidedown in less than 1 1/2 months. I have put my two dogs up for adoption, I am going to quit my job and we are going down to one salary (my wife's) in order to provide home care and keep our kids out of daycare (i have a 20 month old daughter). And we are trying to move out of our older larger home and get into something smaller so we can control the internal house enviornment easier.

*important*

I am completely uncertain about taking my son to family functions. My wifes family is a very big and affectionate family. We usually travel to Philly (we are outside of Wash D.C) and stay with my inlaws. Their house is very old and outdated, the house still has the carpets my wife played on when she was a kid and no one takes off their shoes (she is 34). The bathrooms have tile and mold which they are constantly spraying Tilex on (which doesn't work). My inlaws also are the caregivers for my wifes 89 year old grandfather who sometimes forgets to wipe after going # 2 in the bathroom. After my sons CF diagnoses and culture PA at less than a month and a half of age I feel this is a PA breeding ground. My inlaws do so much for us, but I want to stay at her sisters house which is much, much cleaner. Is this necesary? Am I right for feeling the way I do about my inlaws house? Should we avoid staying at other houses all together (even if they are clean)? Should I force everyone who wants to pick my boy up at least use antibacterial hand lotion? Is getting rid of my dogs a good choice (in an effort to fight PA)? Is moving to smaller home so I can control internal environment going overboard? Or, am I going over the edge? Please chime in, I need advice from seasoned pros........
 

mpax

New member
I would like to thank everyone for chiming in with their experiences. I am sure you all understand my fear being a parent to a newborn w/ CF and culturing PA already. I am really scared and I just cannot stop thinking about my boy's future and how uncertain it is. I know this is the wrong thing to do and I need to be strong for my son, my wife, and the rest of our family but I cannot stop obsessing over the negatives. I am also going out of my mind trying to learn about PA. CF has turned our lives upsidedown in less than 1 1/2 months. I have put my two dogs up for adoption, I am going to quit my job and we are going down to one salary (my wife's) in order to provide home care and keep our kids out of daycare (i have a 20 month old daughter). And we are trying to move out of our older larger home and get into something smaller so we can control the internal house enviornment easier.

*important*

I am completely uncertain about taking my son to family functions. My wifes family is a very big and affectionate family. We usually travel to Philly (we are outside of Wash D.C) and stay with my inlaws. Their house is very old and outdated, the house still has the carpets my wife played on when she was a kid and no one takes off their shoes (she is 34). The bathrooms have tile and mold which they are constantly spraying Tilex on (which doesn't work). My inlaws also are the caregivers for my wifes 89 year old grandfather who sometimes forgets to wipe after going # 2 in the bathroom. After my sons CF diagnoses and culture PA at less than a month and a half of age I feel this is a PA breeding ground. My inlaws do so much for us, but I want to stay at her sisters house which is much, much cleaner. Is this necesary? Am I right for feeling the way I do about my inlaws house? Should we avoid staying at other houses all together (even if they are clean)? Should I force everyone who wants to pick my boy up at least use antibacterial hand lotion? Is getting rid of my dogs a good choice (in an effort to fight PA)? Is moving to smaller home so I can control internal environment going overboard? Or, am I going over the edge? Please chime in, I need advice from seasoned pros........
 

mpax

New member
I would like to thank everyone for chiming in with their experiences. I am sure you all understand my fear being a parent to a newborn w/ CF and culturing PA already. I am really scared and I just cannot stop thinking about my boy's future and how uncertain it is. I know this is the wrong thing to do and I need to be strong for my son, my wife, and the rest of our family but I cannot stop obsessing over the negatives. I am also going out of my mind trying to learn about PA. CF has turned our lives upsidedown in less than 1 1/2 months. I have put my two dogs up for adoption, I am going to quit my job and we are going down to one salary (my wife's) in order to provide home care and keep our kids out of daycare (i have a 20 month old daughter). And we are trying to move out of our older larger home and get into something smaller so we can control the internal house enviornment easier.

*important*

I am completely uncertain about taking my son to family functions. My wifes family is a very big and affectionate family. We usually travel to Philly (we are outside of Wash D.C) and stay with my inlaws. Their house is very old and outdated, the house still has the carpets my wife played on when she was a kid and no one takes off their shoes (she is 34). The bathrooms have tile and mold which they are constantly spraying Tilex on (which doesn't work). My inlaws also are the caregivers for my wifes 89 year old grandfather who sometimes forgets to wipe after going # 2 in the bathroom. After my sons CF diagnoses and culture PA at less than a month and a half of age I feel this is a PA breeding ground. My inlaws do so much for us, but I want to stay at her sisters house which is much, much cleaner. Is this necesary? Am I right for feeling the way I do about my inlaws house? Should we avoid staying at other houses all together (even if they are clean)? Should I force everyone who wants to pick my boy up at least use antibacterial hand lotion? Is getting rid of my dogs a good choice (in an effort to fight PA)? Is moving to smaller home so I can control internal environment going overboard? Or, am I going over the edge? Please chime in, I need advice from seasoned pros........
 

mpax

New member
I would like to thank everyone for chiming in with their experiences. I am sure you all understand my fear being a parent to a newborn w/ CF and culturing PA already. I am really scared and I just cannot stop thinking about my boy's future and how uncertain it is. I know this is the wrong thing to do and I need to be strong for my son, my wife, and the rest of our family but I cannot stop obsessing over the negatives. I am also going out of my mind trying to learn about PA. CF has turned our lives upsidedown in less than 1 1/2 months. I have put my two dogs up for adoption, I am going to quit my job and we are going down to one salary (my wife's) in order to provide home care and keep our kids out of daycare (i have a 20 month old daughter). And we are trying to move out of our older larger home and get into something smaller so we can control the internal house enviornment easier.

*important*

I am completely uncertain about taking my son to family functions. My wifes family is a very big and affectionate family. We usually travel to Philly (we are outside of Wash D.C) and stay with my inlaws. Their house is very old and outdated, the house still has the carpets my wife played on when she was a kid and no one takes off their shoes (she is 34). The bathrooms have tile and mold which they are constantly spraying Tilex on (which doesn't work). My inlaws also are the caregivers for my wifes 89 year old grandfather who sometimes forgets to wipe after going # 2 in the bathroom. After my sons CF diagnoses and culture PA at less than a month and a half of age I feel this is a PA breeding ground. My inlaws do so much for us, but I want to stay at her sisters house which is much, much cleaner. Is this necesary? Am I right for feeling the way I do about my inlaws house? Should we avoid staying at other houses all together (even if they are clean)? Should I force everyone who wants to pick my boy up at least use antibacterial hand lotion? Is getting rid of my dogs a good choice (in an effort to fight PA)? Is moving to smaller home so I can control internal environment going overboard? Or, am I going over the edge? Please chime in, I need advice from seasoned pros........
 

mpax

New member
I would like to thank everyone for chiming in with their experiences. I am sure you all understand my fear being a parent to a newborn w/ CF and culturing PA already. I am really scared and I just cannot stop thinking about my boy's future and how uncertain it is. I know this is the wrong thing to do and I need to be strong for my son, my wife, and the rest of our family but I cannot stop obsessing over the negatives. I am also going out of my mind trying to learn about PA. CF has turned our lives upsidedown in less than 1 1/2 months. I have put my two dogs up for adoption, I am going to quit my job and we are going down to one salary (my wife's) in order to provide home care and keep our kids out of daycare (i have a 20 month old daughter). And we are trying to move out of our older larger home and get into something smaller so we can control the internal house enviornment easier.

*important*

I am completely uncertain about taking my son to family functions. My wifes family is a very big and affectionate family. We usually travel to Philly (we are outside of Wash D.C) and stay with my inlaws. Their house is very old and outdated, the house still has the carpets my wife played on when she was a kid and no one takes off their shoes (she is 34). The bathrooms have tile and mold which they are constantly spraying Tilex on (which doesn't work). My inlaws also are the caregivers for my wifes 89 year old grandfather who sometimes forgets to wipe after going # 2 in the bathroom. After my sons CF diagnoses and culture PA at less than a month and a half of age I feel this is a PA breeding ground. My inlaws do so much for us, but I want to stay at her sisters house which is much, much cleaner. Is this necesary? Am I right for feeling the way I do about my inlaws house? Should we avoid staying at other houses all together (even if they are clean)? Should I force everyone who wants to pick my boy up at least use antibacterial hand lotion? Is getting rid of my dogs a good choice (in an effort to fight PA)? Is moving to smaller home so I can control internal environment going overboard? Or, am I going over the edge? Please chime in, I need advice from seasoned pros........
 

mpax

New member
Kim,

Thank you for writting, I am having a hard time being strong right now. Your post does help me realize how essential a positive attitude is. You are so right about having the advanced drugs now, it is a comfort being able to dismiss tragic stories due to the fact that the patient had the disease before all the advanced medication they have today was availiable. I have also read some very good things (research) from the CF foundation (hope for all of ). Would you please read my post which is on page two of this forum and let me know what you think. I have so many questions and you seem like a great candidate to give me expert advice. Thanks very very much.
 

mpax

New member
Kim,

Thank you for writting, I am having a hard time being strong right now. Your post does help me realize how essential a positive attitude is. You are so right about having the advanced drugs now, it is a comfort being able to dismiss tragic stories due to the fact that the patient had the disease before all the advanced medication they have today was availiable. I have also read some very good things (research) from the CF foundation (hope for all of ). Would you please read my post which is on page two of this forum and let me know what you think. I have so many questions and you seem like a great candidate to give me expert advice. Thanks very very much.
 

mpax

New member
Kim,

Thank you for writting, I am having a hard time being strong right now. Your post does help me realize how essential a positive attitude is. You are so right about having the advanced drugs now, it is a comfort being able to dismiss tragic stories due to the fact that the patient had the disease before all the advanced medication they have today was availiable. I have also read some very good things (research) from the CF foundation (hope for all of ). Would you please read my post which is on page two of this forum and let me know what you think. I have so many questions and you seem like a great candidate to give me expert advice. Thanks very very much.
 

mpax

New member
Kim,

Thank you for writting, I am having a hard time being strong right now. Your post does help me realize how essential a positive attitude is. You are so right about having the advanced drugs now, it is a comfort being able to dismiss tragic stories due to the fact that the patient had the disease before all the advanced medication they have today was availiable. I have also read some very good things (research) from the CF foundation (hope for all of ). Would you please read my post which is on page two of this forum and let me know what you think. I have so many questions and you seem like a great candidate to give me expert advice. Thanks very very much.
 

mpax

New member
Kim,

Thank you for writting, I am having a hard time being strong right now. Your post does help me realize how essential a positive attitude is. You are so right about having the advanced drugs now, it is a comfort being able to dismiss tragic stories due to the fact that the patient had the disease before all the advanced medication they have today was availiable. I have also read some very good things (research) from the CF foundation (hope for all of ). Would you please read my post which is on page two of this forum and let me know what you think. I have so many questions and you seem like a great candidate to give me expert advice. Thanks very very much.
 

mpax

New member
Fourkidsmom,

Since you have had the same experience I have had (young infant culturing PA) I am very interested in your advice. I have been going out of my mind trying to combat PA. I have not even though about cepecia, is cepecia airborne? Is it like PA in the fact that it is everywhere? Do you take any precautions against it and PA?

Please read my post which is page 2 of this forum and let me know your opinion. The people in the forum have a wealth of information that I want to tap into. You all are the pros at living with CF. Thank you for your help, it is greatly appreciated.
 

mpax

New member
Fourkidsmom,

Since you have had the same experience I have had (young infant culturing PA) I am very interested in your advice. I have been going out of my mind trying to combat PA. I have not even though about cepecia, is cepecia airborne? Is it like PA in the fact that it is everywhere? Do you take any precautions against it and PA?

Please read my post which is page 2 of this forum and let me know your opinion. The people in the forum have a wealth of information that I want to tap into. You all are the pros at living with CF. Thank you for your help, it is greatly appreciated.
 

mpax

New member
Fourkidsmom,

Since you have had the same experience I have had (young infant culturing PA) I am very interested in your advice. I have been going out of my mind trying to combat PA. I have not even though about cepecia, is cepecia airborne? Is it like PA in the fact that it is everywhere? Do you take any precautions against it and PA?

Please read my post which is page 2 of this forum and let me know your opinion. The people in the forum have a wealth of information that I want to tap into. You all are the pros at living with CF. Thank you for your help, it is greatly appreciated.
 

mpax

New member
Fourkidsmom,

Since you have had the same experience I have had (young infant culturing PA) I am very interested in your advice. I have been going out of my mind trying to combat PA. I have not even though about cepecia, is cepecia airborne? Is it like PA in the fact that it is everywhere? Do you take any precautions against it and PA?

Please read my post which is page 2 of this forum and let me know your opinion. The people in the forum have a wealth of information that I want to tap into. You all are the pros at living with CF. Thank you for your help, it is greatly appreciated.
 

mpax

New member
Fourkidsmom,

Since you have had the same experience I have had (young infant culturing PA) I am very interested in your advice. I have been going out of my mind trying to combat PA. I have not even though about cepecia, is cepecia airborne? Is it like PA in the fact that it is everywhere? Do you take any precautions against it and PA?

Please read my post which is page 2 of this forum and let me know your opinion. The people in the forum have a wealth of information that I want to tap into. You all are the pros at living with CF. Thank you for your help, it is greatly appreciated.
 

Ratatosk

Administrator
Staff member
It's my understanding that if caught and treated early enough, it can be eradicated before it colonizes. DS has cultured non-mucoid pseudomonas -- very early (3 months).

Could've gotten it anywhere -- but we suspect it was from the CF clinic. Community waiting room, medical staff not being great about proper handwashing... We also wonder if there was a cross contamination issue in the lab because DS has only cultured during CF clinic days and it only showed up on those cultures. Never when we've had cultures at the main clinic or at his primary CF doctor's office.

Cepacia scares the heck out of me. Especially since our CF clinic isn't too concerned about the cross contamination issue. The doctors have told us they've never had a case; however, I know of two CFers locally, who didn't necessarily go to the center for treatment, but went to the same doctors, were treated at the same hospital, who DID have it.
 

Ratatosk

Administrator
Staff member
It's my understanding that if caught and treated early enough, it can be eradicated before it colonizes. DS has cultured non-mucoid pseudomonas -- very early (3 months).

Could've gotten it anywhere -- but we suspect it was from the CF clinic. Community waiting room, medical staff not being great about proper handwashing... We also wonder if there was a cross contamination issue in the lab because DS has only cultured during CF clinic days and it only showed up on those cultures. Never when we've had cultures at the main clinic or at his primary CF doctor's office.

Cepacia scares the heck out of me. Especially since our CF clinic isn't too concerned about the cross contamination issue. The doctors have told us they've never had a case; however, I know of two CFers locally, who didn't necessarily go to the center for treatment, but went to the same doctors, were treated at the same hospital, who DID have it.
 

Ratatosk

Administrator
Staff member
It's my understanding that if caught and treated early enough, it can be eradicated before it colonizes. DS has cultured non-mucoid pseudomonas -- very early (3 months).

Could've gotten it anywhere -- but we suspect it was from the CF clinic. Community waiting room, medical staff not being great about proper handwashing... We also wonder if there was a cross contamination issue in the lab because DS has only cultured during CF clinic days and it only showed up on those cultures. Never when we've had cultures at the main clinic or at his primary CF doctor's office.

Cepacia scares the heck out of me. Especially since our CF clinic isn't too concerned about the cross contamination issue. The doctors have told us they've never had a case; however, I know of two CFers locally, who didn't necessarily go to the center for treatment, but went to the same doctors, were treated at the same hospital, who DID have it.
 

Ratatosk

Administrator
Staff member
It's my understanding that if caught and treated early enough, it can be eradicated before it colonizes. DS has cultured non-mucoid pseudomonas -- very early (3 months).

Could've gotten it anywhere -- but we suspect it was from the CF clinic. Community waiting room, medical staff not being great about proper handwashing... We also wonder if there was a cross contamination issue in the lab because DS has only cultured during CF clinic days and it only showed up on those cultures. Never when we've had cultures at the main clinic or at his primary CF doctor's office.

Cepacia scares the heck out of me. Especially since our CF clinic isn't too concerned about the cross contamination issue. The doctors have told us they've never had a case; however, I know of two CFers locally, who didn't necessarily go to the center for treatment, but went to the same doctors, were treated at the same hospital, who DID have it.
 

Ratatosk

Administrator
Staff member
It's my understanding that if caught and treated early enough, it can be eradicated before it colonizes. DS has cultured non-mucoid pseudomonas -- very early (3 months).

Could've gotten it anywhere -- but we suspect it was from the CF clinic. Community waiting room, medical staff not being great about proper handwashing... We also wonder if there was a cross contamination issue in the lab because DS has only cultured during CF clinic days and it only showed up on those cultures. Never when we've had cultures at the main clinic or at his primary CF doctor's office.

Cepacia scares the heck out of me. Especially since our CF clinic isn't too concerned about the cross contamination issue. The doctors have told us they've never had a case; however, I know of two CFers locally, who didn't necessarily go to the center for treatment, but went to the same doctors, were treated at the same hospital, who DID have it.
 
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