question about multiple cf cases in a family

[anonymous]

ok so i have a question.... My sister has a baby, and he is 7 months old.. he has had a cold for 3 weeks now and he's been wheezing lately.. my sister is really paranoid about all this cause caleb has cf, she mentioned it to the dr about sweat testing him and the dr said the chances are unlikely and she doesnt think its necessary... i know the chances are slim but is it possible that he could have cf??? does anyone else have multiple cases of cf in their family???? thanks in advance!!

Melissa mom to dylan 6 no cf and caleb 3wcf

 

[anonymous]

Yes it is very possible and yes she should get tested and yes there are many people with multiple CF cases in their family. You sister is obviously talking to a doctor who does not know the statistics on CF-and there are a lot of doctors who don't, it just isn't their speciality.

If this is you biological sister (and not sister-in-law), she has a good chance of having a Cf carrier gene and it is just as likely that your sisters husband could have a carrier gene as well. That is all it would take for one or all, or none if they are lucky, of their children to have CF. If this is your biological brother and sister-in-law, the same as I mentioned above applies-he could be a carrier as well his wife could be. Many millions of people are carriers and don't even know it until it is too late. Many people say "theres no family history" but there are a few reasons for that. The CF gene was only discovered in the 80's, so generations before that might have been sick and dying but it was attributed to something else. Like in my husbands family, they did some research and come to find out a hundred years ago or so he had and uncle and some cousins who died very young (in their teens and in infancy) and had all sorts of problems that are now attributed to CF, but they didnt' know anything about it back then.

I would really push for your sister to have her son tested.

Julie-RN (wife to Mark w/CF)

 

[anonymous]

yes it is my biological sister...... now if her doc refuses to test him who would she contact to have it done.. cf center??? can a sweat test be done with out a referall from a dr... i dont know the whole scoop on the doctor but i have told her it would be a good idea to have him tested and its painless.... im just hoping that he doesnt have it... would that mean that caleb couldnt spend time with his nephew, cross- contamination wise.. cause that would really break calebs heart.....


Melissa

 

[anonymous]

My oldest sons original ped would not test him. So I went to another doctor for a 2nd opinion and that doctor tested him. Maybe you could ask your sons doctors to do the test. They have done that at our cf center. I think it is ok as long as they are family to be around each other.

 

[Emily65Roses]

Heh... CF is genetic. That's all you need to know for the testing of your child to be justified. If a family member has it, you have EVERY RIGHT to have your child tested, no matter what ignorance your doctor is displaying.

 

[thefrogprincess]

Absolutely get him tested. Get in touch with your CF center, they will probably do it. If he doesn't have it (which I hope he doesn't) your entire family still needs to be tested to see if they are carriers. That way they know the risk of having kids with CF. All it involves is a simple blood test. They will probably want your son's blood so they can compare the samples and make it less likely to get a false positive. They may even already have Caleb typed.

As for multiple cases in a family, it happens all the time. I have it, my brother has it, and my dad's cousin's daughter has it.

 

[anonymous]

Melissa, if you sisters doctor is still refusing to refer them to a CF center (which is really where her son should be tested anyways for the utmost accuracy) it is really going to depend on her insurance. More than likely she is going to need a referral because a CF center is considered a specialist, but she should double check that with her insurance. But, she may run into this current doctor being unwilling to refer her-even if she talks to him again. If that continues to be the case, she should find another primary doctor who is contracted with her insurance . She may even be able to talk to the doctor before her appointment to see if the doctor would be willing to refer her son to a CF center at her request. I would push for this, because I know you know that with CF the eariler a proper diagnosis is given, and the earlier treatments are started the better chance the child will have at lengtheing their life and being a bit healthier.

Also, about the crosscontamination, that can be a tricky one. There are actually a lot of CFers on this board who are friends and see eahother in person, there are also a number of CFers who are dating and or married and they both have CF. The really only very dangerous thing is the B. Cepcia, more than likely every CFer is going to contract Pseudmonas in their life and that is handled pretty well by medications right now. If your nephew has CF too, it is really going to have to be a decision between you and your sister (and spouses) as to their contact, but just keep in mind that you only live once and which is worse, sharing a pseudmonas bug but getting to grow up close and seeing eachother, or getting psuedmonas a little later in life but not being able to spend time with your favorite cousin, miss out on family events... it is a difficult desision, but they are also going to make up their own minds when they are older despite the cross contamination statistics.

Julie-RN (wife to Mark 24 w/CF)

 

[anonymous]

I believe testing is definetly something that needs to be done. If for nothing else just for peace of mind. CF has everything to do with genetics. The fact that you have a child with CF, I would think would make the doctors want to do the test. They say it is weird to have more that one child in a family with CF but it is possible. There are four of six children in my family with it, and the other two are both carriers of the gene. Doctors are discovering new things all the time, and anything is possible even when they say it isn't. As far as the cross contamination, that is something you will have to decide. My sister and I shared a room all our lives, and never really had problems catching what each other had, other than the occasional cold or flu, but that is understandable. I have several CF friends with different strains of Psuedomonas and I have never caught anything from them either. However, my brother doesn't associate with very many of his friends anymore due to the fear of catching something. I think it just depends on the person and how they feel about it. I wish you luck in your decision and I hope everything turns out good.

-Ann 25 w/cf