Afraid of bacteria

[rosesixtyfive]

<img src="i/expressions/face-icon-small-confused.gif" border="0">
Hello, my son is three months old and had Meconium Ilea, so was diagnosed very early. I have already survived a broken heart, and come back stronger as his best advocate. I am in awe of him, and will do anything I have to to make his life specatular.
He is homozygous delta f508, and I have heard a lot of negative things about this. I read a post by a 24 year old who said he had pseudomonis argeunosa, and that his doctors were baffled by how well he was doing because he was homozygous delta f508, and those CFers were not supposed to be able to survive with that in their lungs without rapid lung deterioration.
What will happen to my baby when he starts to get bacteria in his lungs? Are there any recommendations for trying to prevent them? Can I clean my house in a particular way?

Thank you,
rosesixtyfive
Mother of three-month old Sam, Delta f508, and a fighter

 

[rosesixtyfive]

<img src="i/expressions/face-icon-small-confused.gif" border="0">
Hello, my son is three months old and had Meconium Ilea, so was diagnosed very early. I have already survived a broken heart, and come back stronger as his best advocate. I am in awe of him, and will do anything I have to to make his life specatular.
He is homozygous delta f508, and I have heard a lot of negative things about this. I read a post by a 24 year old who said he had pseudomonis argeunosa, and that his doctors were baffled by how well he was doing because he was homozygous delta f508, and those CFers were not supposed to be able to survive with that in their lungs without rapid lung deterioration.
What will happen to my baby when he starts to get bacteria in his lungs? Are there any recommendations for trying to prevent them? Can I clean my house in a particular way?

Thank you,
rosesixtyfive
Mother of three-month old Sam, Delta f508, and a fighter

 

[rosesixtyfive]

<img src="i/expressions/face-icon-small-confused.gif" border="0">
Hello, my son is three months old and had Meconium Ilea, so was diagnosed very early. I have already survived a broken heart, and come back stronger as his best advocate. I am in awe of him, and will do anything I have to to make his life specatular.
He is homozygous delta f508, and I have heard a lot of negative things about this. I read a post by a 24 year old who said he had pseudomonis argeunosa, and that his doctors were baffled by how well he was doing because he was homozygous delta f508, and those CFers were not supposed to be able to survive with that in their lungs without rapid lung deterioration.
What will happen to my baby when he starts to get bacteria in his lungs? Are there any recommendations for trying to prevent them? Can I clean my house in a particular way?

Thank you,
rosesixtyfive
Mother of three-month old Sam, Delta f508, and a fighter

 

[rosesixtyfive]

<img src="i/expressions/face-icon-small-confused.gif" border="0">
Hello, my son is three months old and had Meconium Ilea, so was diagnosed very early. I have already survived a broken heart, and come back stronger as his best advocate. I am in awe of him, and will do anything I have to to make his life specatular.
He is homozygous delta f508, and I have heard a lot of negative things about this. I read a post by a 24 year old who said he had pseudomonis argeunosa, and that his doctors were baffled by how well he was doing because he was homozygous delta f508, and those CFers were not supposed to be able to survive with that in their lungs without rapid lung deterioration.
What will happen to my baby when he starts to get bacteria in his lungs? Are there any recommendations for trying to prevent them? Can I clean my house in a particular way?

Thank you,
rosesixtyfive
Mother of three-month old Sam, Delta f508, and a fighter

 

[rosesixtyfive]

<img src="i/expressions/face-icon-small-confused.gif" border="0">
<br />Hello, my son is three months old and had Meconium Ilea, so was diagnosed very early. I have already survived a broken heart, and come back stronger as his best advocate. I am in awe of him, and will do anything I have to to make his life specatular.
<br />He is homozygous delta f508, and I have heard a lot of negative things about this. I read a post by a 24 year old who said he had pseudomonis argeunosa, and that his doctors were baffled by how well he was doing because he was homozygous delta f508, and those CFers were not supposed to be able to survive with that in their lungs without rapid lung deterioration.
<br />What will happen to my baby when he starts to get bacteria in his lungs? Are there any recommendations for trying to prevent them? Can I clean my house in a particular way?
<br />
<br />Thank you,
<br />rosesixtyfive
<br />Mother of three-month old Sam, Delta f508, and a fighter

 

[Mommafirst]

Welcome to the board. Nearly four years ago I was precisely where you are. Overwhelmed, heart broken, and learning a new language and new culture. It gets easier, I promise.

First of all, DDF508 is the most common CF mutations. Do not get caught up in thinking that mutation is a predictor of outcome. I have a friend who has the same mutations and approaching her 40th birthday. She has two kids, is happily married, and is doing very well. She has cultured pseudomonas and MRSA since she was a teen.

As for the germs. You could become a germophobe. Or a clean freak. Many of us do. But it doesn't change a gosh darn thing. Its merely a coping method for trying to control the uncontrollable. The yucky CF germs are everywhere. Staph is on most household surfaces, pseudomonas is in tap water, etc. Wash your hands, keep your house clean, but don't blame yourself when the culture happens. It is inevitable -- I do hope it takes a long time though.

(((HUGS))) hang in there and keep coming around. You are right to take on the role of the best advocate -- I'm sure you will fit in here just great.

 

[Mommafirst]

Welcome to the board. Nearly four years ago I was precisely where you are. Overwhelmed, heart broken, and learning a new language and new culture. It gets easier, I promise.

First of all, DDF508 is the most common CF mutations. Do not get caught up in thinking that mutation is a predictor of outcome. I have a friend who has the same mutations and approaching her 40th birthday. She has two kids, is happily married, and is doing very well. She has cultured pseudomonas and MRSA since she was a teen.

As for the germs. You could become a germophobe. Or a clean freak. Many of us do. But it doesn't change a gosh darn thing. Its merely a coping method for trying to control the uncontrollable. The yucky CF germs are everywhere. Staph is on most household surfaces, pseudomonas is in tap water, etc. Wash your hands, keep your house clean, but don't blame yourself when the culture happens. It is inevitable -- I do hope it takes a long time though.

(((HUGS))) hang in there and keep coming around. You are right to take on the role of the best advocate -- I'm sure you will fit in here just great.

 

[Mommafirst]

Welcome to the board. Nearly four years ago I was precisely where you are. Overwhelmed, heart broken, and learning a new language and new culture. It gets easier, I promise.

First of all, DDF508 is the most common CF mutations. Do not get caught up in thinking that mutation is a predictor of outcome. I have a friend who has the same mutations and approaching her 40th birthday. She has two kids, is happily married, and is doing very well. She has cultured pseudomonas and MRSA since she was a teen.

As for the germs. You could become a germophobe. Or a clean freak. Many of us do. But it doesn't change a gosh darn thing. Its merely a coping method for trying to control the uncontrollable. The yucky CF germs are everywhere. Staph is on most household surfaces, pseudomonas is in tap water, etc. Wash your hands, keep your house clean, but don't blame yourself when the culture happens. It is inevitable -- I do hope it takes a long time though.

(((HUGS))) hang in there and keep coming around. You are right to take on the role of the best advocate -- I'm sure you will fit in here just great.

 

[Mommafirst]

Welcome to the board. Nearly four years ago I was precisely where you are. Overwhelmed, heart broken, and learning a new language and new culture. It gets easier, I promise.

First of all, DDF508 is the most common CF mutations. Do not get caught up in thinking that mutation is a predictor of outcome. I have a friend who has the same mutations and approaching her 40th birthday. She has two kids, is happily married, and is doing very well. She has cultured pseudomonas and MRSA since she was a teen.

As for the germs. You could become a germophobe. Or a clean freak. Many of us do. But it doesn't change a gosh darn thing. Its merely a coping method for trying to control the uncontrollable. The yucky CF germs are everywhere. Staph is on most household surfaces, pseudomonas is in tap water, etc. Wash your hands, keep your house clean, but don't blame yourself when the culture happens. It is inevitable -- I do hope it takes a long time though.

(((HUGS))) hang in there and keep coming around. You are right to take on the role of the best advocate -- I'm sure you will fit in here just great.

 

[Mommafirst]

Welcome to the board. Nearly four years ago I was precisely where you are. Overwhelmed, heart broken, and learning a new language and new culture. It gets easier, I promise.
<br />
<br />First of all, DDF508 is the most common CF mutations. Do not get caught up in thinking that mutation is a predictor of outcome. I have a friend who has the same mutations and approaching her 40th birthday. She has two kids, is happily married, and is doing very well. She has cultured pseudomonas and MRSA since she was a teen.
<br />
<br />As for the germs. You could become a germophobe. Or a clean freak. Many of us do. But it doesn't change a gosh darn thing. Its merely a coping method for trying to control the uncontrollable. The yucky CF germs are everywhere. Staph is on most household surfaces, pseudomonas is in tap water, etc. Wash your hands, keep your house clean, but don't blame yourself when the culture happens. It is inevitable -- I do hope it takes a long time though.
<br />
<br />(((HUGS))) hang in there and keep coming around. You are right to take on the role of the best advocate -- I'm sure you will fit in here just great.

 

[mneville]

Hi. I was in your exact same spot 5 years ago. Aidan was diagnosed at birth as a Double Delta. I was devastated beyond words. BUT today he is an amazingly gifted 5 year old who goes to school ,plays sports, smart as a whip and does his treatments without a problem most days.

I was terrified of bacteria but he started culturing Staph A pretty much at birth. He now cultures MRSA for about a year. Yeah, it stinks but there is nothing I could have done to prevent it. We are careful about hand washing and sick people but other than that, he lives a reamarkably full life. I won't lie...his life is more difficult and he has had some complications but he just rolls with it. These kids truly are amazing and we are his strongest advocates. There are some awesome drugs in the pipeline that give us even more hope. Enjoy your baby, you can handle this!

Megan, mom to Aidan 5 with CF and Gavin 2 no CF thru IVF/PGD

 

[mneville]

Hi. I was in your exact same spot 5 years ago. Aidan was diagnosed at birth as a Double Delta. I was devastated beyond words. BUT today he is an amazingly gifted 5 year old who goes to school ,plays sports, smart as a whip and does his treatments without a problem most days.

I was terrified of bacteria but he started culturing Staph A pretty much at birth. He now cultures MRSA for about a year. Yeah, it stinks but there is nothing I could have done to prevent it. We are careful about hand washing and sick people but other than that, he lives a reamarkably full life. I won't lie...his life is more difficult and he has had some complications but he just rolls with it. These kids truly are amazing and we are his strongest advocates. There are some awesome drugs in the pipeline that give us even more hope. Enjoy your baby, you can handle this!

Megan, mom to Aidan 5 with CF and Gavin 2 no CF thru IVF/PGD

 

[mneville]

Hi. I was in your exact same spot 5 years ago. Aidan was diagnosed at birth as a Double Delta. I was devastated beyond words. BUT today he is an amazingly gifted 5 year old who goes to school ,plays sports, smart as a whip and does his treatments without a problem most days.

I was terrified of bacteria but he started culturing Staph A pretty much at birth. He now cultures MRSA for about a year. Yeah, it stinks but there is nothing I could have done to prevent it. We are careful about hand washing and sick people but other than that, he lives a reamarkably full life. I won't lie...his life is more difficult and he has had some complications but he just rolls with it. These kids truly are amazing and we are his strongest advocates. There are some awesome drugs in the pipeline that give us even more hope. Enjoy your baby, you can handle this!

Megan, mom to Aidan 5 with CF and Gavin 2 no CF thru IVF/PGD

 

[mneville]

Hi. I was in your exact same spot 5 years ago. Aidan was diagnosed at birth as a Double Delta. I was devastated beyond words. BUT today he is an amazingly gifted 5 year old who goes to school ,plays sports, smart as a whip and does his treatments without a problem most days.

I was terrified of bacteria but he started culturing Staph A pretty much at birth. He now cultures MRSA for about a year. Yeah, it stinks but there is nothing I could have done to prevent it. We are careful about hand washing and sick people but other than that, he lives a reamarkably full life. I won't lie...his life is more difficult and he has had some complications but he just rolls with it. These kids truly are amazing and we are his strongest advocates. There are some awesome drugs in the pipeline that give us even more hope. Enjoy your baby, you can handle this!

Megan, mom to Aidan 5 with CF and Gavin 2 no CF thru IVF/PGD

 

[mneville]

Hi. I was in your exact same spot 5 years ago. Aidan was diagnosed at birth as a Double Delta. I was devastated beyond words. BUT today he is an amazingly gifted 5 year old who goes to school ,plays sports, smart as a whip and does his treatments without a problem most days.
<br />
<br />I was terrified of bacteria but he started culturing Staph A pretty much at birth. He now cultures MRSA for about a year. Yeah, it stinks but there is nothing I could have done to prevent it. We are careful about hand washing and sick people but other than that, he lives a reamarkably full life. I won't lie...his life is more difficult and he has had some complications but he just rolls with it. These kids truly are amazing and we are his strongest advocates. There are some awesome drugs in the pipeline that give us even more hope. Enjoy your baby, you can handle this!
<br />
<br />Megan, mom to Aidan 5 with CF and Gavin 2 no CF thru IVF/PGD

 

[Ratatosk]

DS is 6 -- goes to elementary school. Has been enrolled in tennis, baseball, swimming lessons in the past. Currently he's in gymnastics and skating. We make sure we wipe off his hands with antibacterial wipes after the activities. Try to discourage nose picking, etc. We feel it is also VERY important that he be active and get regular exercise -- so there has to be balance.

We try to avoid certain situations -- smoke, sick people... Last summer there was an event held at a hotel with a waterslide and we know from the health dept. that it's not a good idea for ANYONE to go there. So DS was a tad disappointed about not being able to go.

I'm not a germ a phobe. Try to keep the house fairly clean. I boil his nebs daily. I change out the bathroom handtowel at least once a day. He always gets a clean one when he brushes his teeth.

 

[Ratatosk]

DS is 6 -- goes to elementary school. Has been enrolled in tennis, baseball, swimming lessons in the past. Currently he's in gymnastics and skating. We make sure we wipe off his hands with antibacterial wipes after the activities. Try to discourage nose picking, etc. We feel it is also VERY important that he be active and get regular exercise -- so there has to be balance.

We try to avoid certain situations -- smoke, sick people... Last summer there was an event held at a hotel with a waterslide and we know from the health dept. that it's not a good idea for ANYONE to go there. So DS was a tad disappointed about not being able to go.

I'm not a germ a phobe. Try to keep the house fairly clean. I boil his nebs daily. I change out the bathroom handtowel at least once a day. He always gets a clean one when he brushes his teeth.

 

[Ratatosk]

DS is 6 -- goes to elementary school. Has been enrolled in tennis, baseball, swimming lessons in the past. Currently he's in gymnastics and skating. We make sure we wipe off his hands with antibacterial wipes after the activities. Try to discourage nose picking, etc. We feel it is also VERY important that he be active and get regular exercise -- so there has to be balance.

We try to avoid certain situations -- smoke, sick people... Last summer there was an event held at a hotel with a waterslide and we know from the health dept. that it's not a good idea for ANYONE to go there. So DS was a tad disappointed about not being able to go.

I'm not a germ a phobe. Try to keep the house fairly clean. I boil his nebs daily. I change out the bathroom handtowel at least once a day. He always gets a clean one when he brushes his teeth.

 

[Ratatosk]

DS is 6 -- goes to elementary school. Has been enrolled in tennis, baseball, swimming lessons in the past. Currently he's in gymnastics and skating. We make sure we wipe off his hands with antibacterial wipes after the activities. Try to discourage nose picking, etc. We feel it is also VERY important that he be active and get regular exercise -- so there has to be balance.

We try to avoid certain situations -- smoke, sick people... Last summer there was an event held at a hotel with a waterslide and we know from the health dept. that it's not a good idea for ANYONE to go there. So DS was a tad disappointed about not being able to go.

I'm not a germ a phobe. Try to keep the house fairly clean. I boil his nebs daily. I change out the bathroom handtowel at least once a day. He always gets a clean one when he brushes his teeth.

 

[Ratatosk]

DS is 6 -- goes to elementary school. Has been enrolled in tennis, baseball, swimming lessons in the past. Currently he's in gymnastics and skating. We make sure we wipe off his hands with antibacterial wipes after the activities. Try to discourage nose picking, etc. We feel it is also VERY important that he be active and get regular exercise -- so there has to be balance.
<br />
<br />We try to avoid certain situations -- smoke, sick people... Last summer there was an event held at a hotel with a waterslide and we know from the health dept. that it's not a good idea for ANYONE to go there. So DS was a tad disappointed about not being able to go.
<br />
<br />I'm not a germ a phobe. Try to keep the house fairly clean. I boil his nebs daily. I change out the bathroom handtowel at least once a day. He always gets a clean one when he brushes his teeth.