Everything is New to Me

[ambrozhe]

Hi everyone. I would like to apologize in advance for the long post. Thank you to those that read it and reply. I have been on the site a few times and have read many posts. My son, 2 months, was diagnosed at 2 weeks. We have been to the St. Louis Children's Hospital twice and have gotten a lot of information on cystic fibrosis that I didn't think was needed (not to seem like a know it all). I have a degree in Biology and Secondary Education so that I can teach high school science. I understand the biology and physiology of cystic fibrosis, what I need to know more about is what should I be doing for my son. When precautions to take, how to clean my home to keep my son healthier?
So let me tell you a little about my son. He has 2 copies of df508. He is pancreatic insufficient and takes creon 6. He has not cultured any bacteria yet, hopefully for a long time.
Now I have a 3 year old daughter that does not have cf. Before my son's diagnosis I was a type of mother that tried not to worry to much. I find my daughter often eating food off the floor or putting things into her mouth that have fallen outside and even drinking the water from the bathtub. Although I try to explain the concept of germs to her I know it is hard for her to understand the concept and at the time she does things what I have told her is the farthest thing in her mind. So with my background in biology and have studied microbiology I haven't had a problem with her when I find her doing these things. I do direct her to wash her hands or stop from doing these actions but I haven't let it worry me or bother me much because for a healthy child there is no concern for these things. (As my former professor always said, "A little dirt won't kill you.")
So now back to my concern.

What should I be concerned with as far as cystic fibrosis and my son go?
What are the bacteria that can harm him? I know Pseudomonas aeruginosa and B. cepacia but are there others.
What precautions should I take?
How should I clean? bottles? house?
Anything else relating to cf that would help me with my new lifestyle?
I do keep my home clean but as most of you know to keep up with it is also hard with children so I don't mop, wipe down surfaces, etc everyday. Should I be doing these things routinely everyday? I believe that quality of life if more important then quantity, however, I do want to give my son the most beneficial environment without taking away his life, my life, or my family's life. I don't think cleaning and worrying 24/7 is as important as playing outside with my kids and making messes in the kitchen or while playing in the bathtub.
With all that said I would enjoy any comments that you can give me. Thank you
Amber

 

[ambrozhe]

Hi everyone. I would like to apologize in advance for the long post. Thank you to those that read it and reply. I have been on the site a few times and have read many posts. My son, 2 months, was diagnosed at 2 weeks. We have been to the St. Louis Children's Hospital twice and have gotten a lot of information on cystic fibrosis that I didn't think was needed (not to seem like a know it all). I have a degree in Biology and Secondary Education so that I can teach high school science. I understand the biology and physiology of cystic fibrosis, what I need to know more about is what should I be doing for my son. When precautions to take, how to clean my home to keep my son healthier?
So let me tell you a little about my son. He has 2 copies of df508. He is pancreatic insufficient and takes creon 6. He has not cultured any bacteria yet, hopefully for a long time.
Now I have a 3 year old daughter that does not have cf. Before my son's diagnosis I was a type of mother that tried not to worry to much. I find my daughter often eating food off the floor or putting things into her mouth that have fallen outside and even drinking the water from the bathtub. Although I try to explain the concept of germs to her I know it is hard for her to understand the concept and at the time she does things what I have told her is the farthest thing in her mind. So with my background in biology and have studied microbiology I haven't had a problem with her when I find her doing these things. I do direct her to wash her hands or stop from doing these actions but I haven't let it worry me or bother me much because for a healthy child there is no concern for these things. (As my former professor always said, "A little dirt won't kill you.")
So now back to my concern.

What should I be concerned with as far as cystic fibrosis and my son go?
What are the bacteria that can harm him? I know Pseudomonas aeruginosa and B. cepacia but are there others.
What precautions should I take?
How should I clean? bottles? house?
Anything else relating to cf that would help me with my new lifestyle?
I do keep my home clean but as most of you know to keep up with it is also hard with children so I don't mop, wipe down surfaces, etc everyday. Should I be doing these things routinely everyday? I believe that quality of life if more important then quantity, however, I do want to give my son the most beneficial environment without taking away his life, my life, or my family's life. I don't think cleaning and worrying 24/7 is as important as playing outside with my kids and making messes in the kitchen or while playing in the bathtub.
With all that said I would enjoy any comments that you can give me. Thank you
Amber

 

[ambrozhe]

Hi everyone. I would like to apologize in advance for the long post. Thank you to those that read it and reply. I have been on the site a few times and have read many posts. My son, 2 months, was diagnosed at 2 weeks. We have been to the St. Louis Children's Hospital twice and have gotten a lot of information on cystic fibrosis that I didn't think was needed (not to seem like a know it all). I have a degree in Biology and Secondary Education so that I can teach high school science. I understand the biology and physiology of cystic fibrosis, what I need to know more about is what should I be doing for my son. When precautions to take, how to clean my home to keep my son healthier?
<br />So let me tell you a little about my son. He has 2 copies of df508. He is pancreatic insufficient and takes creon 6. He has not cultured any bacteria yet, hopefully for a long time.
<br />Now I have a 3 year old daughter that does not have cf. Before my son's diagnosis I was a type of mother that tried not to worry to much. I find my daughter often eating food off the floor or putting things into her mouth that have fallen outside and even drinking the water from the bathtub. Although I try to explain the concept of germs to her I know it is hard for her to understand the concept and at the time she does things what I have told her is the farthest thing in her mind. So with my background in biology and have studied microbiology I haven't had a problem with her when I find her doing these things. I do direct her to wash her hands or stop from doing these actions but I haven't let it worry me or bother me much because for a healthy child there is no concern for these things. (As my former professor always said, "A little dirt won't kill you.")
<br />So now back to my concern.
<br />
<br />What should I be concerned with as far as cystic fibrosis and my son go?
<br />What are the bacteria that can harm him? I know Pseudomonas aeruginosa and B. cepacia but are there others.
<br />What precautions should I take?
<br />How should I clean? bottles? house?
<br />Anything else relating to cf that would help me with my new lifestyle?
<br />I do keep my home clean but as most of you know to keep up with it is also hard with children so I don't mop, wipe down surfaces, etc everyday. Should I be doing these things routinely everyday? I believe that quality of life if more important then quantity, however, I do want to give my son the most beneficial environment without taking away his life, my life, or my family's life. I don't think cleaning and worrying 24/7 is as important as playing outside with my kids and making messes in the kitchen or while playing in the bathtub.
<br />With all that said I would enjoy any comments that you can give me. Thank you
<br />Amber
<br />
<br />

 

[Ratatosk]

A good source of information is the cystic fibrosis foundation cff.org I've printed off their publications regarding germs, enzymes and the infant (toddler, school age child), cf and school...

As for the cleaning issues... I clean the house as often as I used to before DS -- once a week. Nebulizer cups need to be boiled/sterilized after each use. I boil a bunch of them each day for 10 minutes.

I did get much better about handwashing, sanitizing than before. After grocery shopping, going to the park, blowing my nose... Basically first thing I do when I get out to the car and get home. We had a rule that anyone who wanted to hold DS as a baby had to wash hands first.

Tub toys -- ones with holes or that can get moldy are usually avoided or played with once in the tub and are tossed.

Other common cf bugs -- mrsa, enterbactor choclae (sp), staph, Stenotrophomonas Maltophilia, H. Flu...

DS started going to daycare at 3 months. The center was great about sterilizing toys and surfaces, informing parents of any illnesses going around, keeping the babies separated from the germy toddlers <img src="i/expressions/face-icon-small-smile.gif" border="0"> ...

 

[Ratatosk]

A good source of information is the cystic fibrosis foundation cff.org I've printed off their publications regarding germs, enzymes and the infant (toddler, school age child), cf and school...

As for the cleaning issues... I clean the house as often as I used to before DS -- once a week. Nebulizer cups need to be boiled/sterilized after each use. I boil a bunch of them each day for 10 minutes.

I did get much better about handwashing, sanitizing than before. After grocery shopping, going to the park, blowing my nose... Basically first thing I do when I get out to the car and get home. We had a rule that anyone who wanted to hold DS as a baby had to wash hands first.

Tub toys -- ones with holes or that can get moldy are usually avoided or played with once in the tub and are tossed.

Other common cf bugs -- mrsa, enterbactor choclae (sp), staph, Stenotrophomonas Maltophilia, H. Flu...

DS started going to daycare at 3 months. The center was great about sterilizing toys and surfaces, informing parents of any illnesses going around, keeping the babies separated from the germy toddlers <img src="i/expressions/face-icon-small-smile.gif" border="0"> ...

 

[Ratatosk]

A good source of information is the cystic fibrosis foundation cff.org I've printed off their publications regarding germs, enzymes and the infant (toddler, school age child), cf and school...
<br />
<br />As for the cleaning issues... I clean the house as often as I used to before DS -- once a week. Nebulizer cups need to be boiled/sterilized after each use. I boil a bunch of them each day for 10 minutes.
<br />
<br />I did get much better about handwashing, sanitizing than before. After grocery shopping, going to the park, blowing my nose... Basically first thing I do when I get out to the car and get home. We had a rule that anyone who wanted to hold DS as a baby had to wash hands first.
<br />
<br />Tub toys -- ones with holes or that can get moldy are usually avoided or played with once in the tub and are tossed.
<br />
<br />Other common cf bugs -- mrsa, enterbactor choclae (sp), staph, Stenotrophomonas Maltophilia, H. Flu...
<br />
<br />DS started going to daycare at 3 months. The center was great about sterilizing toys and surfaces, informing parents of any illnesses going around, keeping the babies separated from the germy toddlers <img src="i/expressions/face-icon-small-smile.gif" border="0"> ...

 

[Rebjane]

Hi Amber,

I also have one child without CF(who is now 11) and one child with CF(who is 7).. I too never worried about germs with my first child. I just felt exposure would strengthen his immune system..Fast forward to 2nd child and the world of CF and things changed.. I've mellowed out a bit with the germ thing but there are some precautions that just make sense....Handwashing. Flu shots for the whole family...Purell is always in my purse. Not exposing my CF child to situations where those "bad bugs" are...Nursing homes, hospitals(ok this one can be hard)..Unfortunately, children with CF are discouraged from being close together because they can share the CF bacteria.

We do not let my CF child in hot tubs.

My daughter with CF goes to public school, she's in the first grade..She goes to dance class, art class, skiing, swimming, you name it. We have a dog and a cat. She has friends.

Somehow, we found a new normal...Please ask any questions there is no silly question. The Cystic Fibrosis Foundation website is www.cff.org.

Rebecca

 

[Rebjane]

Hi Amber,

I also have one child without CF(who is now 11) and one child with CF(who is 7).. I too never worried about germs with my first child. I just felt exposure would strengthen his immune system..Fast forward to 2nd child and the world of CF and things changed.. I've mellowed out a bit with the germ thing but there are some precautions that just make sense....Handwashing. Flu shots for the whole family...Purell is always in my purse. Not exposing my CF child to situations where those "bad bugs" are...Nursing homes, hospitals(ok this one can be hard)..Unfortunately, children with CF are discouraged from being close together because they can share the CF bacteria.

We do not let my CF child in hot tubs.

My daughter with CF goes to public school, she's in the first grade..She goes to dance class, art class, skiing, swimming, you name it. We have a dog and a cat. She has friends.

Somehow, we found a new normal...Please ask any questions there is no silly question. The Cystic Fibrosis Foundation website is www.cff.org.

Rebecca

 

[Rebjane]

Hi Amber,
<br />
<br />I also have one child without CF(who is now 11) and one child with CF(who is 7).. I too never worried about germs with my first child. I just felt exposure would strengthen his immune system..Fast forward to 2nd child and the world of CF and things changed.. I've mellowed out a bit with the germ thing but there are some precautions that just make sense....Handwashing. Flu shots for the whole family...Purell is always in my purse. Not exposing my CF child to situations where those "bad bugs" are...Nursing homes, hospitals(ok this one can be hard)..Unfortunately, children with CF are discouraged from being close together because they can share the CF bacteria.
<br />
<br />We do not let my CF child in hot tubs.
<br />
<br />My daughter with CF goes to public school, she's in the first grade..She goes to dance class, art class, skiing, swimming, you name it. We have a dog and a cat. She has friends.
<br />
<br />Somehow, we found a new normal...Please ask any questions there is no silly question. The Cystic Fibrosis Foundation website is www.cff.org.
<br />
<br />Rebecca

 

[ambrozhe]

Thank you so much for your replies. I have been overwhelmed by my new lifestyle and to hear and talk to others that are going through the same thing has been helpful.

 

[ambrozhe]

Thank you so much for your replies. I have been overwhelmed by my new lifestyle and to hear and talk to others that are going through the same thing has been helpful.

 

[ambrozhe]

Thank you so much for your replies. I have been overwhelmed by my new lifestyle and to hear and talk to others that are going through the same thing has been helpful.

 

[jbrandonAW]

First I think that germs are a good thing for almost ANYONES immune systems -even a CFers. Having a strong immune system is vital! Yes there are bacteria that are more dangerous to us vs others, but those are everywhere and we still need to build immunity to it. My mom wasn't the worst house cleaner, but our house was never spotless. We played outside ALOT, and even down to covering ourselves head to toe in mud. I was never treated any different then my sister, other than I did treatments and got to eat more.

One thing I would suggest is to never use hard house cleaners. Those are so much worse for lung health than a messy house. I suggest water and vinegar (it also disinfects). You can add a little lemon to it for smell and you can also your baking soda. The only thing "extra" that I use is clorox wipes b/c they are just so easy lol. But everything like that we use is dye free and fragrence free b/c all that can cause inflammation and thats awful for CF lungs.

I am awful about cleaning my nebs -so get good about it now. Invest in a Avent IQ24 sterilizer and a germ guardian. I am trying to save the money now to get them... As for bottles - I would get glass b/c they are cleaner and don't leach chemicals.

Also handwashing is vital - for everyone. I have soap and hand sanitizer in all bathrooms, diaper bags, and everything. There are even natural hand sanitizers. But as soon as we get home from anywhere we all wash our hands and sanitize them. We also wash them as bathroom use and before eating. I also think that sanitizing toothbrushes is very important. I soak ours in mouth wash weekly and replace them monthly.

I think the most important things are nutrition, med complaince, and find natural ways of boosting the immune system. Vit C, Vit D, and probitoics are very important and I would find out when to introduce them to your child. Be proactive NOT reactive about CF! Also get involved and stay involved with the CF community.

 

[jbrandonAW]

First I think that germs are a good thing for almost ANYONES immune systems -even a CFers. Having a strong immune system is vital! Yes there are bacteria that are more dangerous to us vs others, but those are everywhere and we still need to build immunity to it. My mom wasn't the worst house cleaner, but our house was never spotless. We played outside ALOT, and even down to covering ourselves head to toe in mud. I was never treated any different then my sister, other than I did treatments and got to eat more.

One thing I would suggest is to never use hard house cleaners. Those are so much worse for lung health than a messy house. I suggest water and vinegar (it also disinfects). You can add a little lemon to it for smell and you can also your baking soda. The only thing "extra" that I use is clorox wipes b/c they are just so easy lol. But everything like that we use is dye free and fragrence free b/c all that can cause inflammation and thats awful for CF lungs.

I am awful about cleaning my nebs -so get good about it now. Invest in a Avent IQ24 sterilizer and a germ guardian. I am trying to save the money now to get them... As for bottles - I would get glass b/c they are cleaner and don't leach chemicals.

Also handwashing is vital - for everyone. I have soap and hand sanitizer in all bathrooms, diaper bags, and everything. There are even natural hand sanitizers. But as soon as we get home from anywhere we all wash our hands and sanitize them. We also wash them as bathroom use and before eating. I also think that sanitizing toothbrushes is very important. I soak ours in mouth wash weekly and replace them monthly.

I think the most important things are nutrition, med complaince, and find natural ways of boosting the immune system. Vit C, Vit D, and probitoics are very important and I would find out when to introduce them to your child. Be proactive NOT reactive about CF! Also get involved and stay involved with the CF community.

 

[jbrandonAW]

First I think that germs are a good thing for almost ANYONES immune systems -even a CFers. Having a strong immune system is vital! Yes there are bacteria that are more dangerous to us vs others, but those are everywhere and we still need to build immunity to it. My mom wasn't the worst house cleaner, but our house was never spotless. We played outside ALOT, and even down to covering ourselves head to toe in mud. I was never treated any different then my sister, other than I did treatments and got to eat more.
<br />
<br />One thing I would suggest is to never use hard house cleaners. Those are so much worse for lung health than a messy house. I suggest water and vinegar (it also disinfects). You can add a little lemon to it for smell and you can also your baking soda. The only thing "extra" that I use is clorox wipes b/c they are just so easy lol. But everything like that we use is dye free and fragrence free b/c all that can cause inflammation and thats awful for CF lungs.
<br />
<br />I am awful about cleaning my nebs -so get good about it now. Invest in a Avent IQ24 sterilizer and a germ guardian. I am trying to save the money now to get them... As for bottles - I would get glass b/c they are cleaner and don't leach chemicals.
<br />
<br />Also handwashing is vital - for everyone. I have soap and hand sanitizer in all bathrooms, diaper bags, and everything. There are even natural hand sanitizers. But as soon as we get home from anywhere we all wash our hands and sanitize them. We also wash them as bathroom use and before eating. I also think that sanitizing toothbrushes is very important. I soak ours in mouth wash weekly and replace them monthly.
<br />
<br />I think the most important things are nutrition, med complaince, and find natural ways of boosting the immune system. Vit C, Vit D, and probitoics are very important and I would find out when to introduce them to your child. Be proactive NOT reactive about CF! Also get involved and stay involved with the CF community.

 

[ambrozhe]

Jessica - Thank you for bringing me back to "exposure to to germs can actually help" I switched to more gentler household products when my daughter was born. I already use vinegar to clean floors and toys - but I would have never thought to put lemon in it, thank you. I also changed the laundry detergent to free and clear because of my daughter's skin but I continue to use fabric softener with a fragrance so I will definitely be changing to a free and clear dryer sheet. I just bought a sterilizer but I have the tommee tippee brand, are all sterilizers the same? What is different about the Avent? I looked at the germ guardian when purchasing the tommee tippee so I will also save up and get that as well.
I thought that I was being crazy about the toothbrush because I just sent mine through the dishwasher and then sanitizer LOL. I am glad to hear someone else do that.
So I am reading ways to help my son be healthier on some other forums, such as using sea salt instead of regular salt. I have read about some oils and such. I am going to be calling the CF nurse and dietitian about these things but are they okay to be giving my son and what has worked for you or others. What do the oils do? What type of oils? If my child has a cough or more mucous can a sea salt steam bath help? I have looked on cff.org for some answers to my questions but I can't seem to find anything. What are some other links that could help me find other products, etc. to benefit my son?
Thank you

 

[ambrozhe]

Jessica - Thank you for bringing me back to "exposure to to germs can actually help" I switched to more gentler household products when my daughter was born. I already use vinegar to clean floors and toys - but I would have never thought to put lemon in it, thank you. I also changed the laundry detergent to free and clear because of my daughter's skin but I continue to use fabric softener with a fragrance so I will definitely be changing to a free and clear dryer sheet. I just bought a sterilizer but I have the tommee tippee brand, are all sterilizers the same? What is different about the Avent? I looked at the germ guardian when purchasing the tommee tippee so I will also save up and get that as well.
I thought that I was being crazy about the toothbrush because I just sent mine through the dishwasher and then sanitizer LOL. I am glad to hear someone else do that.
So I am reading ways to help my son be healthier on some other forums, such as using sea salt instead of regular salt. I have read about some oils and such. I am going to be calling the CF nurse and dietitian about these things but are they okay to be giving my son and what has worked for you or others. What do the oils do? What type of oils? If my child has a cough or more mucous can a sea salt steam bath help? I have looked on cff.org for some answers to my questions but I can't seem to find anything. What are some other links that could help me find other products, etc. to benefit my son?
Thank you

 

[ambrozhe]

Jessica - Thank you for bringing me back to "exposure to to germs can actually help" I switched to more gentler household products when my daughter was born. I already use vinegar to clean floors and toys - but I would have never thought to put lemon in it, thank you. I also changed the laundry detergent to free and clear because of my daughter's skin but I continue to use fabric softener with a fragrance so I will definitely be changing to a free and clear dryer sheet. I just bought a sterilizer but I have the tommee tippee brand, are all sterilizers the same? What is different about the Avent? I looked at the germ guardian when purchasing the tommee tippee so I will also save up and get that as well.
<br />I thought that I was being crazy about the toothbrush because I just sent mine through the dishwasher and then sanitizer LOL. I am glad to hear someone else do that.
<br />So I am reading ways to help my son be healthier on some other forums, such as using sea salt instead of regular salt. I have read about some oils and such. I am going to be calling the CF nurse and dietitian about these things but are they okay to be giving my son and what has worked for you or others. What do the oils do? What type of oils? If my child has a cough or more mucous can a sea salt steam bath help? I have looked on cff.org for some answers to my questions but I can't seem to find anything. What are some other links that could help me find other products, etc. to benefit my son?
<br />Thank you

 

[bkc3]

My wife and I joined last year when our son was diagnosed, he was 3 and in rough shape. He was hospitalized for a few weeks and fortunately recovered very well. He has been doing very well now that he is on enzymes (creon 6) and the normal preventative inhaled meds and chest PT via the vest. He Cultured PA last year, but his cultures have been clear for a few months. The TOBI seems to be keeping it at bay.

We have never tried a sea salt bath, but the Hypertonic Saline has been a huge help. I am a little apprehensive about aerosolize what's in the city water supply.
As for sterilizers...we use the AVENT IQ24. It seems to be a good unit.
With Gavin so young, it will probably be tough, but try to pack in the calories where you can.

I am not an expert with regard to this monster(CF), but those are some of our experiences.

 

[bkc3]

My wife and I joined last year when our son was diagnosed, he was 3 and in rough shape. He was hospitalized for a few weeks and fortunately recovered very well. He has been doing very well now that he is on enzymes (creon 6) and the normal preventative inhaled meds and chest PT via the vest. He Cultured PA last year, but his cultures have been clear for a few months. The TOBI seems to be keeping it at bay.

We have never tried a sea salt bath, but the Hypertonic Saline has been a huge help. I am a little apprehensive about aerosolize what's in the city water supply.
As for sterilizers...we use the AVENT IQ24. It seems to be a good unit.
With Gavin so young, it will probably be tough, but try to pack in the calories where you can.

I am not an expert with regard to this monster(CF), but those are some of our experiences.