Hi. i am a mom to 2 children. I have a 4 year old without Cf and a 4 month old with CF. After a rocky start, my 4 month old is doing ok. She is happy, gaining weight, taking her enzymes and vitamins and I do CPT on her. My goal is for my children to have a fulfilling and "normal" life. However, I get very nervous taking the baby out with us for fear she will catch something. I am doing my best to not show anxiety as I know kids can sense it, even babies. Any suggestions to get through this? I am breastfeeding and i feel this does offer protection from illness.
Anxiety over taking baby with cf in public
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As a mother, I know what you are feeling. It is so hard to walk that "fine line" between letting your children live a "normal life" and protecting them from the "real world." Given that your child is only 4 months old, I have to assume that your child was just recently diagnosed and that you are still trying to get used to CF and everything that goes along with it. I think time will be the best thing to teach you what you need to do and what you will allow. I know that when my son was first diagnosed (at the age of two), I was so nervous about everything - I worried about Gymboree, the market, and all the other places that he had gone with me for the past several years. By necessity, I still took him everywhere with me, but I constantly worried if I was doing the right thing. But then one day I realized that he had survived the past two years despite being exposed to "all those germs." (I shutter to think about a stage he went through about six months before he was diagnosed in which he loved to chew on his shoes - Yikes!) Now he is five and rolls around on the grass, digs in the dirt and does all the dirty, messy things that boys his age love. I am just careful about it. I take little bottles of antibacterial lotion with me everywhere and we talk about germs. I try not to talk too much about it b/c I want him to enjoy his childhood and develope any phobias along the way. I realize that he is going to do things that I wish he didn't - but I also realize that I can control every aspect of his life. Just like with any child (with or without CF), there is a fine line of things that you can control.As far as suggestions, I would just take one day at a time. Do what you are comfortable with and let time help you ease some of your fears. My only real suggestion would be when you do take your children places, just be careful about things your baby touches (especially since babies love to put their hands in their mouths). Right now he/she probally isn't reaching or grabbing much, but he/she soon will. When my son was that age, I would use an extra wipe during diaper changes and wipe off his hands. They are great - they are portable and they contain a gentle cleaning solution in them. As he/she grows, so will your confidence. Like everything else, together you will figure things out.I applaud you for asking for suggestions - I can tell you are a caring mom who wants the best for your children. It sounds like you are doing a wonderful job. I hope you and your family are adjusting well to your news. It has been three years for us, but I still remember all those emotions. Please feel free to email me if you have any other questions. robertnkatrina@attbi.com--Katrina (mother of three - Sean (5) w/cf, Carolyn (3) wocf and Allison (1) wocf
Hi,Right now when you take the baby with you , you have a lot of control over who touches or holds her/him. Just be aware of who you let handle the baby. After my daughter was diagnosed at 9 and 1/2 months, I was very worried too, but I realized that she can't live in a bubble and as she gets older she will be expised to more and more germs and whatnot. She is now 4+ and doing well. She hasn't had to be hospitalized for over 2 years. (those first 2 years she was in 4 times for infections, including diagnosis)The wipes suggestion from Katrina was great, I used to do that all the time. I also brought alcohol wipes with me and cleaned high chairs and tables in restaurants. I do the antibacterial gel now, too. Don't get too freaked out by the germs though. Remember your own hands, too. It wouldn't kill the people who want to hold or handle the baby to wash their hands before they do. If you are uncomfortable asking them to wash first, just blame it on the doctor. Say the baby's CF docs recomended that anyone who holds the baby wash their hands first. That way noone is offended by the request, you are just following doctors orders.Good luck,Andrea
Thanks for your feedback. I don't feel too nervous when we are outside, it's like the grocery store, drugstore type thing that bothers me. I usually carry her in a baby carrier so people don't touch her. Strangers are so weird, always wanting to touch your baby. When is it ok to use the anti-bacterial hand gel? Could I use it on my 4 year old? He's so stubborn he might not use it. He's VERY good about washing his hands before touching her. I let him hold her and kiss her, it's good for both of them. I've known about my baby having Cf before she was born, she was diagnosed prenatally and had surgery at 5 days old. She is doing ok now and is the sweetest, happiest baby I've ever seen.
I am so happy your baby is doing well. Four months is such a cute age! I hope she continues to do well. To answer your questions - you would have to ask you pediatrician about using the gel on a 4-month old. I doubt it would be a problem, but I do know that newborn skin is more sensitive than our skin. That is why I suggested the wipes. I think the important part is keeping her hands clean - I think it is about the same as hand washing for older kids. I know people just love touching and holding babies - especially their hands, which also drives me batty. I know lots of friends who don't have children with CF who ask "strangers" to please not touch the baby's hands - I think that is a reasonable request regardless of CF.As far as your four year old, I have been using the gel on my kids since they were about a year or so. I know sometimes my kids don't like the gel because it makes their hands cold and wet feeling (I have to agree with them, it is an odd sensation). I found some antibaterial wipes that I use on them. I think they are made by "Wet Ones" and they say antibacterial on the container. The best part of those is that they are old enough to use them themselves (they are 5 and 3). They use the wipes before eating and after doing anything that seemed to involve a lot of germs and/or dirt. He might like those b/c they may not seem too different than washing his hands at home. I know, four year olds can be pretty stubborn 
I use the gel alot to clean surfaces (grocery carts, tables, etc.) to eliminate germs. At home I use that liquid lysol spray to clean our table, the gel is kind of my away from home cleaning solution. Hope this helps. Good luck.Katrina
I use the gel alot to clean surfaces (grocery carts, tables, etc.) to eliminate germs. At home I use that liquid lysol spray to clean our table, the gel is kind of my away from home cleaning solution. Hope this helps. Good luck.KatrinaHI,If it is the drugstore and grocery store that bothers you can you try not to take her with you then? I know sometimes this is next to impossible and you have to take them with you but you are still in contol of her in the market and at the drugstore too. Keep an eye (or an ear) out for people who are coughing and/or sneezing. If you see someone in an aisle who is hacking away skip that one and do the rest of your shopping then just go back when you are finished the rest of your shopping. I used to do this all the time, It does make shopping take a bit longer but I felt better not having her in the aisle with a sick person. Also remember that not all of the people who are coughing are sick, sometimes it is allergies. I used to make it a practice in the drugstore to stay out of the aisle with the cough and cold stuff if I had Rachel with me. (unless it was empty) I used to hate to take her with me to the drugstore. I used to work in one and I am quite aware of how easy it is to pick things up in there. (but the baby isn't handling money or items that a sick person has touched.) I hope this helps, I know how worried these things can make a mom.Andrea
Hi,i have a 2 yr old son with cf ,i know exactly how you feel re: germs. i carry antibactial wipes in my purse, car, diaper bag. wipe down all shopping carts at grocery store, target wherever. Just the area where he sits. then after we leave i wipe down his hands with the wipes , dont know who might of touched him like the checkers who handle dirty money all day! we just joined Kindermusik (national music class for birth thru 7) to get him around other children. he is not in daycare. my inlaws watch him when my husband and i are both at work , he works night and i work days. and the teacher at the class sells a item called a floppy seat, its a shopping cart seat cover. here is the web site www.myuniquebaby.com . i have not ordered one yet but saw someone using one at target the other day. looks very cool! hope i helped some. good luck! amy mom to Nathan 2 with cfp.s. those ball pits in restraurants are what im afraid of when he is older and wants to play in them!
This is a very good question. I am pleased at the number of responses. It is indeed a "fine line".We do not permit our two year old to go to church during Oct -April. The nursery has kids with runny noses, cough ect during the cold and flu season. We alternate weeks to take the other two girls to church while the stay at home parent takes Madison for a walk, to the park or just a ride around town eating french fries.We do the handwashing and try to protect her enviroment as much as possible. However, sometimes it fails and Madison gets a cold or a GI virus.I think the best thing is to keep CF kids well nourished and well rested. If the immune system is running well then the ability to avoid and fight off viruses and bacterial infections will be reduced.I think there is no "right" answer here. Each parent(s) have a unique situation and each should be handled individually. Know your child and do the right thing. Having a 4 month old is different from a 24 month old. Most spread of viruses and bacteria with a 4 month old can be controlled with good hand washing guidelines. 24 month olds are into "everything". It is a little harder with a 24 month old but they have a more developed immune system. So it kinda goes back and forth.Good topic!Don P (Dad to Madison 29 month (w CF), Lauren 8 YO, Caroline 3 Yo)
It's ironic I started this thread on Thursday and Thursday night my 4 yr old came down with a horrible GI virus. Poor kid. It's Monday and the baby(w/CF) hasn't shown symptoms yet. I've got the windows open all through the house, airing it out. I'm very into fresh air. We all did good handwashimg and the 4 yr old seems better. He loves touching, hugging, kissing the baby and i let him start again today. Hopefully we'll all ride through this virus.Jane