for all the moms w/ children w/CF

[anonymous]

I am terrifed to take my baby out of the houst to stores ect..! I dont even take her to relatives houses, only to dr's visits where I keep her totally covered in her carseat. So my ? would be do you take your child or chidren everywhere? What are your restrictions? Are there only certain places you take them? What do you do to try an make it as "healthy" as possible?? My baby is only 3 mths. My pulmonologist said the less I take them out the better and to try not to take her out at all? Would like your input.

Thanks

 

[anonymous]

when my girl was small i did take her out cant hide her from things....the only thing is i was careful and didnt take her out in the cold cold weather! but i tried to keep her as normal as possible and didnt let cf get in the way. unless she was sick. my point is if shes fine take her out like a normal 3 months, its ok she needs that. if someone had a cold just dont let them hold her stuff like that. keep warm in the winter lots of fluids in the summer. hope this helps. i just dont think its healthy to always keep then in!

 

[anonymous]

Hi i have to say i felt the same way about staying home we found out when he was 3 weeks old now my son will be 2 and i'm still very careful where i go and what we do, as soon as i find out someone has the sniffles or more he stays far away from them like this christmas we stayed home due to a niece having a fever it's stuff like that you need to watch, the worst is my older son goes to school so whenever somone is sick i start to worry we have to face life the way it was delt to us.When we go to the cf dr or the ped they won't let us wait in the waiting room for more then 5min. I also don't let strangers get in his face or near him to say how cute he is etc..
I hope i helped just a little

mom of jay 23months

 

[Emily65Roses]

If you never take the baby out, once she does get out into the world, she will have zilch for an immune system and will get really sick. If you expose her to every day stuff now, she'll be healthier longer. My mom took me everywhere. And I still go everywhere.

 

[jaime]

I agree with Emily. My mom took me everywhere. Obviously you dont want to expose your child to illness but its important for the baby to build up his/her immune system. Plus, we know its so important for CFers to stay active and by keeping your child too protected, it may hinder his physical activity.

 

[anonymous]

Here's how I have always replied to questions of this nature and I apologize in advance if it is repetative but I feel the need to say it so...It is a parental instinct to try to and want to protect our children as much as possible but sometimes that can be more harmful in the long run. Consider this, if you are protecing your child all the time now, from EVERYTHING what happens when it's time to go to kindergarden, first grade and so on? If they have been "isolated" for the first 4-5 years of their life and are suddenly put into a situation where every little kid around them has a cold, is sneezing, wiping their nose with their shirt, sneezing on their neighbor, picking their nose...your CFer is going to get sick fast and hard (meaning very badly)- simply because it is such a shock on the body.

If you start gradually introducing your child to the world now, that situation won't come a such a shock to their body when it's time to venture out to school and such. It does make sense to be cautious around others when you take your baby in for doctor appointments, especially to the CF clinic because that is where you know for sure there is a possiblity of contracting something that could really effect the child, but other than that, you are going to do your baby a disservice by sheltering them. And of course it is natural to have dobuts and be scared for your child, but it is something that you really need to work through and there are pleanty of people on this site that can help you out with that!

My husband was diagnosed with CF in 82, back then they knew virtually nothing about the disease, what caused it, how to treat it...and his mom didn't have the option of staying home with him-she was a single mom with two boys so everywhere she went, he went. Now, you will hear a lot on this site that everyone's CF is different and that is SO true. There is no way to determine who will be effected in the lungs, digestive system, reproductive area (for males) until they reach that point in life where you notice they are effected in that area. But my husband swears up and down that his mom taking him out, taking him to friends houses, and having a big brother who brought colds home from school and such (so he got it second hand) probably made it better for him when he started preeschool at 3. He had some hospitalizations when he was younger, and his CF is in his lungs, digestive system and reproductive system, but for the most part he has been lucky and been healthy. Can we contribute that to what his mom did and didn't do with him when he was younger? Nobody really knows, but he does think that early exposure to friends, family, his sibling, play dates, preeschool and such made his transition into the "real" world better for his health.

Best of luck,

Julie (wife to mark 24 w/CF)

 

[anonymous]

my son has cf and was diagnosed at 18months. I took him everywhere and let him play with other kids, we didn't know he had CF and so had no reason to worry. He had a few minor colds and mild pneumonia, which is why he got tested. I was scared that I caused him damage by exposing him to germs. Well that was 4 years ago and he's doing great. It's easy to worry and be cautious about taking your child out, but like Emily said, your child needs to develop immunity or she wont be able to fight it off later in life. Don't through your kid into the ball pit at Chuck-E-Cheese on a saturday afternoon in the middle of flu season (a breeding ground for nastiness!), but do expose her slowly and within reason to the outside world.

 

[Jenni]

My doctors said not to change my life. Live my life as if cf wasn't there. She said not to let cf run my life. There will be times I keep my kids in more, cold weather etc. But my husband works a lot of hours and things have to be done, grocerys have to be bought bills have to be paid. But most of all kids have to be kids. They need to be outside, they need fresh air. I take my kids were ever I go unless there sick.

 

[anonymous]

Hi There,
I just want to say it is perfectly natural to feel the way you do, and when they are so young you are even more protective than normal.
I also was like this, but I then noticed a few social things about my son that concerned me.
He didn't like to be around other people very much and got quite clingy.
I realized that I was actually hindering him, although it made me feel like I was doing the right thing by him, I wasn't really.
I enrolled him in playgroup, take him to the park daily and try to socialize him and myself as much as possible and it has been nothing but therapeutic for the both of us.
I don't like people with bad flu's to be in his face, but I have exposed him to colds and sniffles and he has yet to have a cold that we haven't been able to handle.
But now I have this active, social toddler and he is loving life every day and I have realized that is really important.
So just give yourself time to adjust as well, your baby is only young and so it is a hard time adjusting but you will find it gets easier.
Best of luck to you!
Rebekah Mother to Matt 21mths w/cf

 

[anonymous]

I have a five month old so I can understand where you are coming from. I took him to a playdate yesterday and I think my four old was more excited about the fact that his little brother was coming with us and not just the playdate. In fact, I was taken back by my four year old's reaction when I said Bennett was coming with us. It was like I had 10 heads! It made me realize I need to do more of that. While I want to keep him in a bubble forever it is true what everyone else here is saying. I think you need to have common sense about certain situations but I agree that it is important for them to live their lives (as well as the people around them!) Best of luck to you.

 

[EmilysMom]

Your natural reaction is to protect your child at all costs, but you need to let her begin to build an immune system and that will require her being out in the real world. Let common sense dictate your actions. Don't take her to a relatives house if they are sick, etc...do the obvious things you would do with a healthier child. Take her to playdates and parties but keep her from those with obvious illness where she could catch something that could be damaging to her. She does need to build an immune system though because later, it will become very important for her. We took Emily pretty much everywhere (she was a poster child for 6 years) and her immune system is pretty good so I think we made the right choice 20 years ago. Yes?

 

[anonymous]

I was told to keep my son in as much as possible for his first 6 months.. We only ever took him to the Pulmonologists and the pediatrician.. The pediatricians office was wonderful about not letting us wait in their waiting room with all the sick kids and always let us in the back door and into a waiting room... Our pulmonologists didn't think anything about letting us sit in a waiting room with other CF children.. Well we did what they said and he still came down the the pseudomonas germ. All I can say, is use your best judgement. If it is a nice day, take them out for a walk. Wash your hands alot and make friends and family also if they come over to visit...

 

[anonymous]

I was the same way when my daughter was diagnosed at five-weeks old. She is now three. What I have learned is my daughter will get colds like everyone else's children. The colds will come and go away a few days later. I thought that a cold for my daughter meant severe illness and a good chance of hospitalization. That ended up not being the case. She ended up getting three or four colds her first year when I pretty much kept her away from everyone and felt like we didn't leave the house. She and I finally got tired of hanging out at home and ventured out in the world "mother's day out, swim lessons, music class, play group, etc." We were both much happier. I also read a study in the newspaper this recently that said kids that have had a high temp. (I think it said around 101-102) before they were one years old where 50% less likely to be diagnosed with asthma. What that said to me was kids do better if they are exposed to illnesses at earlier ages. Kids will be exposed at some point when you enroll them in school. My daughter is now in preschool for four mornings a week. She LOVES it and I am so happy she is having fun.

I had another opportunity to use what I learned from my daughter's diagnosis when second child was also diagnosed with cf. The only thing I keep my son out of is Mother's day out. I want to be there when he is playing with others until he is two. I do plan on enrolling him this summer in mother's day out twice a week. I feel like it is just as important for my kids to be given the opportunity to play with other kids and have the same experiences as other children. They both have been very healthy and I am so thankful!

Also, I just re-read what your pulmonologist told you "try not to take your baby out at all." What I have learned is that doctors do not have all of the answers. I wish they did!!! For instance, my daughter's pulmonologist told me it was not a good idea to enroll my three-year old daughter with cf in pre-school this year due to the fact that I would have a one year old at home with cf. He felt she would bring colds home to my son. I did not believe this was in the best interest for my daughter and thought that was being way over protective. My daughter has had maybe one minor cold and has not missed one day of school for any illness.

I totally understand where you are coming. I tell myself if my kids start getting sick, then we can cut back. I would even home-school if it was for their best interest, but until then I just make sure they wash their hands and stay away from those who are sick (if possible!).

One other hint, make sure you get a seat cover for the grocery cart. I really think it has helped my kids from getting sick. Here is a link to the one I have that works really well.
www.cleanshopper.com

Sharon, mom of Sophia, three and Jack, 17 months both with cf

 

[anonymous]

When my first child was born and diagnosed at 7 weeks old. Let me tell you I got rid of all the cleaning stuff in my house and only washed with REALLY HOT SOAPY WATER. I was so afraid of the fumes from everything hurting his lungs. My house was clean. Then he got sick and it was from nothing that i was doing wrong. We ended up in the hospital and the cleaning stuff they use there I freaked. The Dr. told me that they would not hurt him at all i was relieved. I had another child who also has cf and then the fun began. They play ansd have friends and go to school. they are going to get colds you can't avoid it. Like everyone else says in there messages you can't keep them inside away from everthing they won't build up there immune system. To say nothing of the fact you will go crazy staqying in the house all the time. It doesn't matter how patient you are. My boys are 16 and 14 and they have had there challanges, but they are pretty healthy. well adjusted kids. they do well in school and have friends that do come over and sleep over and they sleep over they're house too. don't dwell on the fact that they are going to get sick. You can only prtect them as much as you can. You have to let them be kids and play with other kids. It is so important later on in life for them to learn how to interact with others. i hope that it helps.

 

[anonymous]

Kids with CF feel different enough already because of the meds they take and the treatments they receive, so please let them be normal in all other ways. Overprotecting them isolates them even further.

 

[anonymous]

It's a hard call to make,especiallywhen they are so young. I would tend to be much more careful while your baby is young. My son is now four and goes with me practically everywhere. We were quite careful with him at first though. We were especially careful during winter months...RSV and flu season can be tough for a baby...but toddlers usually have built more of an immune system. I think with time you'll figure out what is best for your family and child. Just the fact that you are so concerned shows that you'll take extra care of your child - they'll be just fine! Hang in there and trust your gut.

Carey

 

[anonymous]

I think you sound very smart. I have found out that people whose lives are not affected by CF or other disease are totally careless about spreading germs. I'm sure I was one of those people too but when you're dealing with CF, you see things very differently. You can't trust other people to not touch your baby with germ-covered hands or cough or sneeze in her direction so keeping her covered up is very wise at this point. Not because she has CF but because she is a baby! It's disgusting how people will wipe their noses or put a shoe on, touching the bottom of it and then reach in to touch your baby!! I think everyone should be more careful with their children, all children, and maybe one day we'll have a generation of people who care enough to wash before they touch a baby and stay home with their nasty colds. As she gets older, certain things are easier to avoid and your daughter, even as early as 3 will know to steer clear of people who seem sick. It's not keeping her in a bubble, it's common sense. People should have more of it, then we wouldn't have to worry so much!

 

[anonymous]

Hello, how are you? I have a 23 month old son Joshua who has cf. Joshua will be 2 years old on Feb.13th. We found out when he was 6 months through the sweat test. Here is my e-mail address if you would like to e-mail eachother about the good and bad days we gp through as a mom with a child having cf. My name is Renee Matlock.
e-mail address is matlockw@bellsouth.net

 

[anonymous]

I don't really have anything different to say, but as the cold weather is here, I tend to think twice about taking my kids to the stores and outside in general. When I do take my 2 yr old out who has CF I try to wipe down the shopping cart handle that he hangs on to with an anti-bacterial wipe. I couldn't believe it when I went to the grocery store and the store was actually providing wipes! Anyway, I try to rely on my common sense about things. Fresh air is going to be good for her little lungs sometimes but not in terribly cold weather. She will need exposure though I admit the first thing you want to do when you find out about CF is put them in a bubble and lock up the house. But reality sets in a life goes on. She's still pretty young and you would want to protect her against any common cold with or without CF but as she gets older you will have to let her be a kid.

Shelly