Are there many families out there with CF amongst the extended family? How do you handle it? My 6-mo old son has CF and so does my 11 month nephew. Our doctor recommends that we don't have close contact. Obviously many brothers/sisters with CF live together, but what about extended family? I don't want to miss my nephew growing up, and I hate to think of what this will do to the boys emotionally as they grow older. <img src="i/expressions/face-icon-small-confused.gif" border="0">
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Cousins with CF
- Thread starter anonymous
- Start date
neither my husband's family (he has CF) nor my family have any cases of CF, so this is purely my opinion based on hearing other situations of CFers in extended families and close in age, and just my thoughts in general.
You and your spouse, and the other parents (brother, sister...) need to sit and discuss what is most important to you at this point. I personally feel that it would be important for these cousins to have a realationship. No CFer is ever going to be able to completely avoid all other CFers. Granted, some CFers never get to personally meet another person with CF. My personal stance on that is that it is a tragedy. Of course, people do have their opinions about "cross contamination" and want to stay healthy and safe, and that is a personal thing. But I don't necessairly agree with that, and if I had CF, that is now how I would live-but again, that is personal.
Just the other weekend my husband and I did the CF walk where he met a little 8 year old guy with CF. The little boy was like, "wow, you have CF. You are so big, that's so cool". and my husband told him, "I stay big by eating right, when my mom and dad told me I needed to eat and what to eat, and even though sometimes I don't like to, I always do my medications to keep my lungs healthy so I can go to the gym and get muscles...." This was probably more beneficial to my husband, (to be viewed as a roll model) than it might have been for the little guy he met. We are keeping in touch with the family and plan to do some activities this summer. Mark feels that he never knows when his time is going to be up (or mine, or this other little guys' for any matter) so he might as well enjoy as much as he can. He has always been very health conscious, (had a rebellious teen stage though) but he feels that the QUALITY of his life ad all the activities he does and all the people he meets; is going to be more important in the end than the QUANTITY of years he <font color=white style="background-color: 3E3E3E;">might</font ft> have lived if he "isolated" himself. -I hope that makes sense.
You can always decide to have contact now, and set some strict guidelines about when someone is "sick" with a flu or a new bug, and then let your children decide for themselves when they get older. Chances are, they are going to be grateful to you for the decision that you made and will probably stay very close. They will have grown up together, both having CF, both eventually understading the in's and out's of the disease, they will have someone to talk to who understands about the coughing, and the eating, and the bloating-somone to talk to and confide in when they feel like nobody else will understand because nobody else "has" what they have.
Speaking from a third party of stories I heard from my husbands mother (and other CFers past their teen years and parent's of teen CFers), his teen years were incredibly difficult. He had some of the general teen issues, and has always been a sweet guy (as his mom tells me all the time) but he became a bit rebellious, didn't want to do his meds, wanted to be normal.... She feels, as well as he does, that if he had a friend/buddy/penpal/local aquaintence with CF; that it might have eased the burden of dealing with the disease throughout his teen years. Maybe these cousins can be that for eachother.
In the end, it is going to be a very personal family choice, but those are just some things to keep in mind as you and your spouse discuss it, and the other parents discuss it as well.
Take care,
Julie (wife to Mark 24 w/CF)
You and your spouse, and the other parents (brother, sister...) need to sit and discuss what is most important to you at this point. I personally feel that it would be important for these cousins to have a realationship. No CFer is ever going to be able to completely avoid all other CFers. Granted, some CFers never get to personally meet another person with CF. My personal stance on that is that it is a tragedy. Of course, people do have their opinions about "cross contamination" and want to stay healthy and safe, and that is a personal thing. But I don't necessairly agree with that, and if I had CF, that is now how I would live-but again, that is personal.
Just the other weekend my husband and I did the CF walk where he met a little 8 year old guy with CF. The little boy was like, "wow, you have CF. You are so big, that's so cool". and my husband told him, "I stay big by eating right, when my mom and dad told me I needed to eat and what to eat, and even though sometimes I don't like to, I always do my medications to keep my lungs healthy so I can go to the gym and get muscles...." This was probably more beneficial to my husband, (to be viewed as a roll model) than it might have been for the little guy he met. We are keeping in touch with the family and plan to do some activities this summer. Mark feels that he never knows when his time is going to be up (or mine, or this other little guys' for any matter) so he might as well enjoy as much as he can. He has always been very health conscious, (had a rebellious teen stage though) but he feels that the QUALITY of his life ad all the activities he does and all the people he meets; is going to be more important in the end than the QUANTITY of years he <font color=white style="background-color: 3E3E3E;">might</font ft> have lived if he "isolated" himself. -I hope that makes sense.
You can always decide to have contact now, and set some strict guidelines about when someone is "sick" with a flu or a new bug, and then let your children decide for themselves when they get older. Chances are, they are going to be grateful to you for the decision that you made and will probably stay very close. They will have grown up together, both having CF, both eventually understading the in's and out's of the disease, they will have someone to talk to who understands about the coughing, and the eating, and the bloating-somone to talk to and confide in when they feel like nobody else will understand because nobody else "has" what they have.
Speaking from a third party of stories I heard from my husbands mother (and other CFers past their teen years and parent's of teen CFers), his teen years were incredibly difficult. He had some of the general teen issues, and has always been a sweet guy (as his mom tells me all the time) but he became a bit rebellious, didn't want to do his meds, wanted to be normal.... She feels, as well as he does, that if he had a friend/buddy/penpal/local aquaintence with CF; that it might have eased the burden of dealing with the disease throughout his teen years. Maybe these cousins can be that for eachother.
In the end, it is going to be a very personal family choice, but those are just some things to keep in mind as you and your spouse discuss it, and the other parents discuss it as well.
Take care,
Julie (wife to Mark 24 w/CF)
Wow, Julie. Incredible response.
First things first: I'm a germaphob (trying each day to get a little less 'uptight'), but when I read your post and tried to put myself in your position, I came to the conclusion that it's so very important to allow your son contact with his cousin. You would run into 2 different problems by avoiding contact. 1) He'd feel isolated and different - - simply because he might interpret the lack of exposure as simply being singled out because he's 'sick." 2) He wouldn't gain a relationship with his cousin.....and a cousin with cf for that matter - - think how much these two have in common and will need each other(especially when they are older and feeling different enough - - that's a recipe for rebellion like Julie mentioned).
In some ways, I think your son is very blessed to have this situation. Yes, it makes things a little more complicated on your end, but I really believe with common sense, you can make it work. Enforce hand-washing, avoid contact if one of them is sick, etc. I'm not saying that you should ignore your clinic's advice, I'm just trying to look at things from the perspective of your son. I have such wonderful memories of my childhood, largely because of the experiences I shared with relatives and cousins my own age. You're in a difficult situation, but I think you can make the best of it. Keep us posted.
Carey
First things first: I'm a germaphob (trying each day to get a little less 'uptight'), but when I read your post and tried to put myself in your position, I came to the conclusion that it's so very important to allow your son contact with his cousin. You would run into 2 different problems by avoiding contact. 1) He'd feel isolated and different - - simply because he might interpret the lack of exposure as simply being singled out because he's 'sick." 2) He wouldn't gain a relationship with his cousin.....and a cousin with cf for that matter - - think how much these two have in common and will need each other(especially when they are older and feeling different enough - - that's a recipe for rebellion like Julie mentioned).
In some ways, I think your son is very blessed to have this situation. Yes, it makes things a little more complicated on your end, but I really believe with common sense, you can make it work. Enforce hand-washing, avoid contact if one of them is sick, etc. I'm not saying that you should ignore your clinic's advice, I'm just trying to look at things from the perspective of your son. I have such wonderful memories of my childhood, largely because of the experiences I shared with relatives and cousins my own age. You're in a difficult situation, but I think you can make the best of it. Keep us posted.
Carey
My daughter was diagnosed when she was six weeks old. We did not have any family history of the disease at the time of her diagnosis. My nephew was diagnosed with cf two weeks later. He was four at the time and was seeing a GI doctor (same practice as my infant daughter's GI) for two years. He had been having problems with constipation and mild failure to thrive when they said he needed a sweat test as well. My husband and I decided to have another child and our second child also has cf. So three of the four grandkids have cf on my husbands side. He only has one brother who has two children.
Our children's doctors told us to be careful but that it is important to continue family relations as normal. What I have learned is you can only take your children's doctors advice about those situations as advice. There are no real answers. Only what you feel comfortable with. For example, my children's cf doctor recommended that we keep my two year old daughter out of preschool when I had my second child with cf. He was concerned that my daughter would bring home viruses to my son. Anyway, my daughter was really ready to "get out in the world" and she loved being around other kids. I enrolled her for two mornings a week for the fall semester and she had ZERO illnesses. She then started to go four mornings a week this past semester and she only caught one cold. What a mistake it would have been for her had I not allowed her to go to school.
My sister-in-law and I are on our toes when the kids are around one another. We try to keep them off of one another, see that they don't share cups, don't cough on each other, etc. There is only so much you can do. We usually only see them about once a month since they live about 45 minutes away.
My son was the first to culture pseudomonas this past winter. My sister-in-law kept her son away until my son had four clean cultures. I think I would have done the same. I really make no attempt to keep my son and daughter off of one another. They don't drink out of the same cups, etc. My daughter never cultured pseudomonas and my son has never cultured her bacteria - staff.
I did inform the family last year that I am not taking any family trips together if we are staying in the same house. Well the in-laws bought a week trip to Florida this summer and wouldn't you know it, we are all planning on staying in the same house for 4 nights in July. No one would take me serious when I brought up my concerns and I just quietly gave in. We are planning on getting everyone cultured right before just to have some piece of mind.
Sorry for the novel...just wanted you to know you are not alone!
Sharon, mom of Sophia, 3.5 and Jack, 1.5 both with cf, aunt to Joseph, 7 with cf
Our children's doctors told us to be careful but that it is important to continue family relations as normal. What I have learned is you can only take your children's doctors advice about those situations as advice. There are no real answers. Only what you feel comfortable with. For example, my children's cf doctor recommended that we keep my two year old daughter out of preschool when I had my second child with cf. He was concerned that my daughter would bring home viruses to my son. Anyway, my daughter was really ready to "get out in the world" and she loved being around other kids. I enrolled her for two mornings a week for the fall semester and she had ZERO illnesses. She then started to go four mornings a week this past semester and she only caught one cold. What a mistake it would have been for her had I not allowed her to go to school.
My sister-in-law and I are on our toes when the kids are around one another. We try to keep them off of one another, see that they don't share cups, don't cough on each other, etc. There is only so much you can do. We usually only see them about once a month since they live about 45 minutes away.
My son was the first to culture pseudomonas this past winter. My sister-in-law kept her son away until my son had four clean cultures. I think I would have done the same. I really make no attempt to keep my son and daughter off of one another. They don't drink out of the same cups, etc. My daughter never cultured pseudomonas and my son has never cultured her bacteria - staff.
I did inform the family last year that I am not taking any family trips together if we are staying in the same house. Well the in-laws bought a week trip to Florida this summer and wouldn't you know it, we are all planning on staying in the same house for 4 nights in July. No one would take me serious when I brought up my concerns and I just quietly gave in. We are planning on getting everyone cultured right before just to have some piece of mind.
Sorry for the novel...just wanted you to know you are not alone!
Sharon, mom of Sophia, 3.5 and Jack, 1.5 both with cf, aunt to Joseph, 7 with cf
My daughter aged 8 and nephew aged 10 both have CF and i think it is very important for them to have contact with each other. At the beginning, when my nephew first got pseudomonas we kept them away from each other but my daughter then developed pseudomonas anyway. At the moment they see each other every weekend whether their cultures show up pseudo or not and it doesnt seem to make any difference - one of them can be positive for it and the other not and it doesnt seem to effect them. Once you develop pseudomonas you can never really fully clear it - it just goes inactive and someone else cannot re-activate it be contact. I would say just be careful if one has obvious cold or infection the same as you would with any other cousin. It can be harder when they are small and very huggy and kissy with each other - at this age mine play together but wouldnt have as much body contact as toddlers. It really helps them to have each other and knowing that they both have CF and same regime and medications makes them feel less isolated.
Hope this helps
K,
3 kids, 1 w/cf and 1 nephew w/cf
Hope this helps
K,
3 kids, 1 w/cf and 1 nephew w/cf