How much public activity do you limit with your newborn with CF

wiltonnh

New member
Hello. I am a mom of four. Our three oldest children are all with out cf, our fourth child, was born 02/03/07. We found out a week later through newborn screening he has CF. The other children were tested and two were questionable after sweat testing however genetic testing reported that they are just carriers of CF. We were sick with worry that the other children would also have CF-can not believe that we dodged that bullet three times. We had no idea we were carriers until our last child was born.

What are anyone's practices with playgroups, outings etc with their newborn cf child.
 

wiltonnh

New member
Hello. I am a mom of four. Our three oldest children are all with out cf, our fourth child, was born 02/03/07. We found out a week later through newborn screening he has CF. The other children were tested and two were questionable after sweat testing however genetic testing reported that they are just carriers of CF. We were sick with worry that the other children would also have CF-can not believe that we dodged that bullet three times. We had no idea we were carriers until our last child was born.

What are anyone's practices with playgroups, outings etc with their newborn cf child.
 

wiltonnh

New member
Hello. I am a mom of four. Our three oldest children are all with out cf, our fourth child, was born 02/03/07. We found out a week later through newborn screening he has CF. The other children were tested and two were questionable after sweat testing however genetic testing reported that they are just carriers of CF. We were sick with worry that the other children would also have CF-can not believe that we dodged that bullet three times. We had no idea we were carriers until our last child was born.

What are anyone's practices with playgroups, outings etc with their newborn cf child.
 

Ratatosk

Administrator
Staff member
Our rule was that nobody could hold the baby until they washed their hands. I do get a little edgy around holidays and family events when people show up sick, but figure eventually DS is going to be going to school and will be exposed to germs, etc.

Also, before DS was born, I didn't worry too much about grocery cart handles -- now I always wipe the cart handles down and I wash my hands when I get home.
 

Ratatosk

Administrator
Staff member
Our rule was that nobody could hold the baby until they washed their hands. I do get a little edgy around holidays and family events when people show up sick, but figure eventually DS is going to be going to school and will be exposed to germs, etc.

Also, before DS was born, I didn't worry too much about grocery cart handles -- now I always wipe the cart handles down and I wash my hands when I get home.
 

Ratatosk

Administrator
Staff member
Our rule was that nobody could hold the baby until they washed their hands. I do get a little edgy around holidays and family events when people show up sick, but figure eventually DS is going to be going to school and will be exposed to germs, etc.

Also, before DS was born, I didn't worry too much about grocery cart handles -- now I always wipe the cart handles down and I wash my hands when I get home.
 

wiltonnh

New member
I am glad to hear that you had some concerns around this time of year as well as around other sick people. I was just out with the kids and came across some sniffly coughing friends and bathed the kids in soap when we got home. Funny thing is I have never been a germ watcher.

I am still new to all there is to know about cf and it seems that the info/treatment is so vast and individual. This is a great site.

Amanda, mom to Emma, Avery, Joe w/o cf & Harry w/cf delta f508
 

wiltonnh

New member
I am glad to hear that you had some concerns around this time of year as well as around other sick people. I was just out with the kids and came across some sniffly coughing friends and bathed the kids in soap when we got home. Funny thing is I have never been a germ watcher.

I am still new to all there is to know about cf and it seems that the info/treatment is so vast and individual. This is a great site.

Amanda, mom to Emma, Avery, Joe w/o cf & Harry w/cf delta f508
 

wiltonnh

New member
I am glad to hear that you had some concerns around this time of year as well as around other sick people. I was just out with the kids and came across some sniffly coughing friends and bathed the kids in soap when we got home. Funny thing is I have never been a germ watcher.

I am still new to all there is to know about cf and it seems that the info/treatment is so vast and individual. This is a great site.

Amanda, mom to Emma, Avery, Joe w/o cf & Harry w/cf delta f508
 
M

Mommafirst

Guest
Last year (when I was exactly in your shoes) I was pretty paralyzed by fear. I stopped doing all playgroups for my older kids, and kept my daughter as "safe" as I could. I've relaxed a bit. I want her to make friends and have a normal childhood. I don't go anywhere without purell and everyone we socialize with know that if their kid is sick they must tell me ahead of time and I won't come. Everyone has been good about it and if they aren't I won't be making plans with them again!!!! <br>
<br>
Germs are so scary because they are invisible and you can make yourself crazy. Try not to let it get you nutso -- do your best and in the meantime enjoy your new little guy!!!
 
M

Mommafirst

Guest
Last year (when I was exactly in your shoes) I was pretty paralyzed by fear. I stopped doing all playgroups for my older kids, and kept my daughter as "safe" as I could. I've relaxed a bit. I want her to make friends and have a normal childhood. I don't go anywhere without purell and everyone we socialize with know that if their kid is sick they must tell me ahead of time and I won't come. Everyone has been good about it and if they aren't I won't be making plans with them again!!!! <br>
<br>
Germs are so scary because they are invisible and you can make yourself crazy. Try not to let it get you nutso -- do your best and in the meantime enjoy your new little guy!!!
 
M

Mommafirst

Guest
Last year (when I was exactly in your shoes) I was pretty paralyzed by fear. I stopped doing all playgroups for my older kids, and kept my daughter as "safe" as I could. I've relaxed a bit. I want her to make friends and have a normal childhood. I don't go anywhere without purell and everyone we socialize with know that if their kid is sick they must tell me ahead of time and I won't come. Everyone has been good about it and if they aren't I won't be making plans with them again!!!! <br>
<br>
Germs are so scary because they are invisible and you can make yourself crazy. Try not to let it get you nutso -- do your best and in the meantime enjoy your new little guy!!!
 

ktsmom

New member
Our DD wasn't diagnosed until she was three so when she was a newborn we were (blissfully?) unaware! But you have a few things going for you - your newborn has almost a whole year before the next cold and flu season comes around, and you are an experienced mom. So when you set some germ rules which may seem "crazy" to others they won't condescend to you that you are a newbie <img src="i/expressions/face-icon-small-smile.gif" border="0">

We hadn't ever been real germ conscious either but we definitely use hand gel now. I think it makes a difference. Otherwise our DD goes to preschool and gets sneezed on just like all the other kids. This was a tough winter for us as far as sickness goes but spring is here! Welcome to the group!
 

ktsmom

New member
Our DD wasn't diagnosed until she was three so when she was a newborn we were (blissfully?) unaware! But you have a few things going for you - your newborn has almost a whole year before the next cold and flu season comes around, and you are an experienced mom. So when you set some germ rules which may seem "crazy" to others they won't condescend to you that you are a newbie <img src="i/expressions/face-icon-small-smile.gif" border="0">

We hadn't ever been real germ conscious either but we definitely use hand gel now. I think it makes a difference. Otherwise our DD goes to preschool and gets sneezed on just like all the other kids. This was a tough winter for us as far as sickness goes but spring is here! Welcome to the group!
 

ktsmom

New member
Our DD wasn't diagnosed until she was three so when she was a newborn we were (blissfully?) unaware! But you have a few things going for you - your newborn has almost a whole year before the next cold and flu season comes around, and you are an experienced mom. So when you set some germ rules which may seem "crazy" to others they won't condescend to you that you are a newbie <img src="i/expressions/face-icon-small-smile.gif" border="0">

We hadn't ever been real germ conscious either but we definitely use hand gel now. I think it makes a difference. Otherwise our DD goes to preschool and gets sneezed on just like all the other kids. This was a tough winter for us as far as sickness goes but spring is here! Welcome to the group!
 

okok

New member
When dd was a newborn we didn't want her to get sick even though we didn't know anything about CF (she was diagnosed until 15 months) but we mainly just avoided sick people and were perfectly ok with her having contact with other people. However, after she was about 4 months i was all about exposing her to germs. The way i thought about it is that it is good for her immune system to be exposed to germs while she was recieving protection from the breastmilk. Even now, although illness is no fun, i try not to limit her exposure to germs (other than the germs of other CFers). Part of growing up is getting sick. It is how you build a strong, healthy immune system which CFer's really need! I especially enjoy exposing my dd to dogs and the type germs that live on farms. I don't worry about dog hair or dirt or anything like that. My immunolugy professor said that part of the reason people in industrialized nations have so many allergies is because we are too hygenic. Apparently that skews your immune system towards allergic type responses.
 

okok

New member
When dd was a newborn we didn't want her to get sick even though we didn't know anything about CF (she was diagnosed until 15 months) but we mainly just avoided sick people and were perfectly ok with her having contact with other people. However, after she was about 4 months i was all about exposing her to germs. The way i thought about it is that it is good for her immune system to be exposed to germs while she was recieving protection from the breastmilk. Even now, although illness is no fun, i try not to limit her exposure to germs (other than the germs of other CFers). Part of growing up is getting sick. It is how you build a strong, healthy immune system which CFer's really need! I especially enjoy exposing my dd to dogs and the type germs that live on farms. I don't worry about dog hair or dirt or anything like that. My immunolugy professor said that part of the reason people in industrialized nations have so many allergies is because we are too hygenic. Apparently that skews your immune system towards allergic type responses.
 

okok

New member
When dd was a newborn we didn't want her to get sick even though we didn't know anything about CF (she was diagnosed until 15 months) but we mainly just avoided sick people and were perfectly ok with her having contact with other people. However, after she was about 4 months i was all about exposing her to germs. The way i thought about it is that it is good for her immune system to be exposed to germs while she was recieving protection from the breastmilk. Even now, although illness is no fun, i try not to limit her exposure to germs (other than the germs of other CFers). Part of growing up is getting sick. It is how you build a strong, healthy immune system which CFer's really need! I especially enjoy exposing my dd to dogs and the type germs that live on farms. I don't worry about dog hair or dirt or anything like that. My immunolugy professor said that part of the reason people in industrialized nations have so many allergies is because we are too hygenic. Apparently that skews your immune system towards allergic type responses.
 

Emily65Roses

New member
I'm not a parent, but I thought I'd speak up. I had no limits as a child (that aren't usual for any child, that is). I had sleepovers, I went to nursery school, kindergarten, and public schools. I played in the dirt. I swam in pools. I went to parties. I took extracurricular art classes. I visited with family, I went with my mom to the grocery store, mall, or whatever else.

If you want to be more careful about being clean, that's fine. But in my personal opinion, restricting too much is going overboard. Mind you, "too much" is a very subjective term. To me, keeping relatives away, keeping them at home for fear of germs, restricting a child's social activities (once they're old enough), etc is my "too much."

There are people who will disagree with me, especially a lot of parents. But having CF myself, I can be of some help. Yes, you'll want parenting tips from other parents with CFers. But if you want your child to live a happy life, you'll also want advice from the actual adult CFers (parent or not) that are floating around, myself included. I can honestly say I'm glad my parents didn't keep me from doing "normal" things. If I died tomorrow (I'm 23), I'd be happy that I got to do "normal" stuff up until then. And if it helps any, I more than likely will not be dying tomorrow. I'm still in d*mn good shape, if I do say so myself. 70% lung function.

In short, you need to <u>find a balance</u> that works for your family and your child (and that may change as the child gets older and starts to make decisions for himself). You need to take care of the CF, make sure meds and therapies get done... but you also need to allow the child to <b>be</b> a child and have a life.

This isn't any assumption on you, but I feel the need to say it for general pondering purposes... What good is a CF life that lasts 5 extra years, if his/her life is spent worrying too much, avoiding everything for fear of germs, missing out on fun, etc...?

Finding a good balance is important. Not too much sheltering, and not too much ignoring responsibilities concerning health. Happy medium. <img src="i/expressions/face-icon-small-smile.gif" border="0">

Oh, and okok has it right. EVERYONE needs to develop a healthy immune system, CFers included. I had chicken pox when I was little, I've had the flu a few times, I've had ear infections, and sinus infections, I get a cold at least once a year. My mom never bothered to keep me away from "sick" people or anything. She didn't rub my face in used tissues or anything, but she let me be around the same thing that my sister (no CF) was around.
 

Emily65Roses

New member
I'm not a parent, but I thought I'd speak up. I had no limits as a child (that aren't usual for any child, that is). I had sleepovers, I went to nursery school, kindergarten, and public schools. I played in the dirt. I swam in pools. I went to parties. I took extracurricular art classes. I visited with family, I went with my mom to the grocery store, mall, or whatever else.

If you want to be more careful about being clean, that's fine. But in my personal opinion, restricting too much is going overboard. Mind you, "too much" is a very subjective term. To me, keeping relatives away, keeping them at home for fear of germs, restricting a child's social activities (once they're old enough), etc is my "too much."

There are people who will disagree with me, especially a lot of parents. But having CF myself, I can be of some help. Yes, you'll want parenting tips from other parents with CFers. But if you want your child to live a happy life, you'll also want advice from the actual adult CFers (parent or not) that are floating around, myself included. I can honestly say I'm glad my parents didn't keep me from doing "normal" things. If I died tomorrow (I'm 23), I'd be happy that I got to do "normal" stuff up until then. And if it helps any, I more than likely will not be dying tomorrow. I'm still in d*mn good shape, if I do say so myself. 70% lung function.

In short, you need to <u>find a balance</u> that works for your family and your child (and that may change as the child gets older and starts to make decisions for himself). You need to take care of the CF, make sure meds and therapies get done... but you also need to allow the child to <b>be</b> a child and have a life.

This isn't any assumption on you, but I feel the need to say it for general pondering purposes... What good is a CF life that lasts 5 extra years, if his/her life is spent worrying too much, avoiding everything for fear of germs, missing out on fun, etc...?

Finding a good balance is important. Not too much sheltering, and not too much ignoring responsibilities concerning health. Happy medium. <img src="i/expressions/face-icon-small-smile.gif" border="0">

Oh, and okok has it right. EVERYONE needs to develop a healthy immune system, CFers included. I had chicken pox when I was little, I've had the flu a few times, I've had ear infections, and sinus infections, I get a cold at least once a year. My mom never bothered to keep me away from "sick" people or anything. She didn't rub my face in used tissues or anything, but she let me be around the same thing that my sister (no CF) was around.
 
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