Dangers of being around each other

[Meabtahi]

So our daughter was diagnosed with CRMS and has a delta 508/r117h mutation combo. Sadly, our good friends who just had a baby a month ago received a cf diagnosis. My question is is it dangerous for our kids to be around each other? Our daughter is very healthy and is not on any meds or treatments at the moment. She is being followed every 3 months by an approved pediatric cf center but is not exhibiting any symptoms and they say she is likely to remain asymptomatic. However, I'm not sure if anything changes if she is around a cf baby. I have a call into our dr but he is out until Monday. Wondering if anyone has any insight. Thank you.

 

[Ratatosk]

I guess I'd be concerned. Whenever ds cultured pseudomonas in the past he never had symptoms. In fact he almost always cultures something. As a baby it was pseudo and H. Flu. Since he was 4 he's cultured steno. maltophilia off and on...

 

[jennywotherspoon]

Hi there,
Just wondering, wouldn't copies of two genes DF508 and R117h mean a definite CF diagnosis, regardless of presenting symptoms at this time? Sorrry to deviate off the point of the thread. I agree that there is no way of knowing if there is a pathogen growing in sputum as there is not always immediate symptoms. I would definitely stay on the safe side and not have the anxiety of wondering if bacteria has been shared.

 

[2roses]

Over the years, the CF Foundation has recommended stricter and stricter infection control protocols. I remember when my DD was first diagnosed as a baby 19 years ago, the CF teens would schedule their hospital tune ups at the same time so they could socialize and hang out in groups (a certified and highly regarded CF care center btw). Then came the dangers of cepacia and that kind of socialization was discouraged (I don't know the details but a 16 yo caught a cepacia cross infection and ended up dying from it). The hospital tightened up after that and updates their policy as new protocols are recommended. These days, every CF patient is put on contact isolation ... Not supposed to leave the room unless it's a medical procedure and then always masked when out if room / hospital staff gown and glove while in room, etc. The CF Foundation will now only allow ONE person with CF at each of their fundraising events ... sad but necessary.

My point is you don't know where things are going with bugs mutating, but the trend is they are getting more virulent and drug resistant. I would always err on the side of caution and not let these kids be together ... ever ... because of the known risks of cross infection. As another poster said, it's commonplace in CF to have an infection with no symptoms or that show up on cultures. Better to be safe ... for both precious kiddos.

 

[welshwitch]

Yep. One of the worst parts of CF. The isolation. I'm so sorry.

 

[liveinhope]

What about siblings????

 

[Angelo]

the siblings question is an important consideration. I don't think doctors and other med pro's will approach this subject for non-siblings because of liability. but as soon as I saw the question about 2 non related children, I immediately though about people in close proximity for most of their time. and the siblings issues can shed light on this. here is my thought thread on this. If I share a razor blade with a stranger, I can get infections on my skin that are harmless to the other person, but everyone has different tolerance to bacteria and other pathogens. however, i can safely share a razor with my wife. why? A doctor shared with me that we all have a variety of pathogens living on the surface of our skin that are completely harmless to us, because our immune system handles it. After living with my wife for several years, the sharing of things, that was once risky, is now safe. Over the years, our immune system becomes exposed to each other's set of pathogens, and can prevent any infection.

That is part of what happens with siblings. although a similar genetic makeup also can add to the safety factor. However, if your family members and your children have been close since the baby was born, they are already sharing pathogens. And at such an early age, the immune system is still developing. You may get the same benefit of a husband and wife and other family members sharing things, but you should not take my word as any level of truth. The point is: talk to medical people until you can find some who will have totally honest conversation with you about this issue. then report back on this forum. I am sure that many others would like to know more.

 

[liveinhope]

Very interesting, thanks for the reply.

 

[Printer]

liveinhope:

If you had a friend with a child that had the measles, you would keep all of your kids away from that child. It is just common sense. Use that same judgement.

Bill

 

[Jennyvb17]

I'm 30, in the early 90's we used to do a cf summer camp. Cepacia vs non cepacia were seperate weeks. We all went home sick. I can't imagine the strange germs we all passed to each other. They stopped doing them in the mid 90's for that reason.

My question would be- could the parents even pass the germs back and forth without the kids ever meeting. Mom who posted holds new baby, giving new baby her cf'ers germs.

 

[Ratatosk]

There are some bugs that can live for very long periods of time on surfaces or are very hard to eradicate. Being that both of these children are quite young and still developing immune systems, I would err on the side of caution as far as having them near each other.

We had concerns regarding an older relative with MRSA who we weren't going to visit, but my in-laws were. Our doctor told us that they should think long and hard regarding how important a visit.

 

[athletixbc]

Your family should avoid contact with the other family whenever possible. It's likely that if the other child has some kind of bacteria that the parents are also carriers of that bacteria, even if the parents are not sick from it. If you must be together, everyone in the group should wear masks as a precaution. This is because it's important for you as parents not to pick up anything from the other family that you could eventually pass on to your own child.

I know that we all have contact with other people all the time without taking special precautions, but when it is known for a fact that someone has CF, we have to do our best to avoid that contact. The chances of cross infection are so much higher.

 

[Ratatosk]

Exactly... With the relative who had MRSA pneumonia, our concern was with my FIL, who has chronic sinus issue possibly contracting it and bringing it home. Even the thought of having the relative visiting my in-laws vacation home, had us planning to stay away for several days even after the guests had left and the house had been thoroughly cleaned and disinfected.