multiple children with cf

aneta

New member
I also have 2 with CF.Boy 18 years old college freshman and girl 16 high school junior.We take one day at a time.
 

aneta

New member
I also have 2 with CF.Boy 18 years old college freshman and girl 16 high school junior.We take one day at a time.
 

aneta

New member
I also have 2 with CF.Boy 18 years old college freshman and girl 16 high school junior.We take one day at a time.
 

aneta

New member
I also have 2 with CF.Boy 18 years old college freshman and girl 16 high school junior.We take one day at a time.
 

aneta

New member
I also have 2 with CF.Boy 18 years old college freshman and girl 16 high school junior.We take one day at a time.
 
T

tammykrumrey

Guest
mommy2diego,
I know that it seems that some families tend to have more than one hospitalized at the same time, but that has never happened to us so far. Even though my girls were always in each others faces to, they haven't cultured the same bacteria over the years.

When they were little, they were both 'binky babies' and I would catch them sucking on each others binks. How gross is that?! They did pass strep back and forth a lot for about three months!! They have both been culturing MRSA for years, basically since dx.

But, Hannah has cultured PA three times over the past three years, and Kayla has never cultured it. Kayla has cultured B.Cepacia two times in the past 6 months, and so far, Hannah has not. They know not to eat and drink after each other and are really good about not coughing on each other.

Kayla has been hospitalized, Hannah has not. I feel very fortunate that we haven't had a double hospitalization at this point. But it is very possible that you won't have to deal with that, and I hope that is the case for you<img src="i/expressions/face-icon-small-smile.gif" border="0">

I look forward to hearing more from you in the future!
 
T

tammykrumrey

Guest
mommy2diego,
I know that it seems that some families tend to have more than one hospitalized at the same time, but that has never happened to us so far. Even though my girls were always in each others faces to, they haven't cultured the same bacteria over the years.

When they were little, they were both 'binky babies' and I would catch them sucking on each others binks. How gross is that?! They did pass strep back and forth a lot for about three months!! They have both been culturing MRSA for years, basically since dx.

But, Hannah has cultured PA three times over the past three years, and Kayla has never cultured it. Kayla has cultured B.Cepacia two times in the past 6 months, and so far, Hannah has not. They know not to eat and drink after each other and are really good about not coughing on each other.

Kayla has been hospitalized, Hannah has not. I feel very fortunate that we haven't had a double hospitalization at this point. But it is very possible that you won't have to deal with that, and I hope that is the case for you<img src="i/expressions/face-icon-small-smile.gif" border="0">

I look forward to hearing more from you in the future!
 
T

tammykrumrey

Guest
mommy2diego,
I know that it seems that some families tend to have more than one hospitalized at the same time, but that has never happened to us so far. Even though my girls were always in each others faces to, they haven't cultured the same bacteria over the years.

When they were little, they were both 'binky babies' and I would catch them sucking on each others binks. How gross is that?! They did pass strep back and forth a lot for about three months!! They have both been culturing MRSA for years, basically since dx.

But, Hannah has cultured PA three times over the past three years, and Kayla has never cultured it. Kayla has cultured B.Cepacia two times in the past 6 months, and so far, Hannah has not. They know not to eat and drink after each other and are really good about not coughing on each other.

Kayla has been hospitalized, Hannah has not. I feel very fortunate that we haven't had a double hospitalization at this point. But it is very possible that you won't have to deal with that, and I hope that is the case for you<img src="i/expressions/face-icon-small-smile.gif" border="0">

I look forward to hearing more from you in the future!
 
T

tammykrumrey

Guest
mommy2diego,
I know that it seems that some families tend to have more than one hospitalized at the same time, but that has never happened to us so far. Even though my girls were always in each others faces to, they haven't cultured the same bacteria over the years.

When they were little, they were both 'binky babies' and I would catch them sucking on each others binks. How gross is that?! They did pass strep back and forth a lot for about three months!! They have both been culturing MRSA for years, basically since dx.

But, Hannah has cultured PA three times over the past three years, and Kayla has never cultured it. Kayla has cultured B.Cepacia two times in the past 6 months, and so far, Hannah has not. They know not to eat and drink after each other and are really good about not coughing on each other.

Kayla has been hospitalized, Hannah has not. I feel very fortunate that we haven't had a double hospitalization at this point. But it is very possible that you won't have to deal with that, and I hope that is the case for you<img src="i/expressions/face-icon-small-smile.gif" border="0">

I look forward to hearing more from you in the future!
 
T

tammykrumrey

Guest
mommy2diego,
<br />I know that it seems that some families tend to have more than one hospitalized at the same time, but that has never happened to us so far. Even though my girls were always in each others faces to, they haven't cultured the same bacteria over the years.
<br />
<br />When they were little, they were both 'binky babies' and I would catch them sucking on each others binks. How gross is that?! They did pass strep back and forth a lot for about three months!! They have both been culturing MRSA for years, basically since dx.
<br />
<br />But, Hannah has cultured PA three times over the past three years, and Kayla has never cultured it. Kayla has cultured B.Cepacia two times in the past 6 months, and so far, Hannah has not. They know not to eat and drink after each other and are really good about not coughing on each other.
<br />
<br />Kayla has been hospitalized, Hannah has not. I feel very fortunate that we haven't had a double hospitalization at this point. But it is very possible that you won't have to deal with that, and I hope that is the case for you<img src="i/expressions/face-icon-small-smile.gif" border="0">
<br />
<br />I look forward to hearing more from you in the future!
 

mylilangel0529

New member
hi im new hear i have 3 children who came back positive on newborn screening with r1162x mutation. one borderline sweat test and one normal. my 3rd chiild has not taken her sweat test yet. I had been tested when pregnant and i am not a carrier (based on the 24 or 27 they tested me for which included r1162x) my husband has never been tested. Has anyone ever had all their children come up positive on newborn screening and only one parent being a carrier:? is it possible my husband has CF and not know it. He is 37
 

mylilangel0529

New member
hi im new hear i have 3 children who came back positive on newborn screening with r1162x mutation. one borderline sweat test and one normal. my 3rd chiild has not taken her sweat test yet. I had been tested when pregnant and i am not a carrier (based on the 24 or 27 they tested me for which included r1162x) my husband has never been tested. Has anyone ever had all their children come up positive on newborn screening and only one parent being a carrier:? is it possible my husband has CF and not know it. He is 37
 

mylilangel0529

New member
hi im new hear i have 3 children who came back positive on newborn screening with r1162x mutation. one borderline sweat test and one normal. my 3rd chiild has not taken her sweat test yet. I had been tested when pregnant and i am not a carrier (based on the 24 or 27 they tested me for which included r1162x) my husband has never been tested. Has anyone ever had all their children come up positive on newborn screening and only one parent being a carrier:? is it possible my husband has CF and not know it. He is 37
 

mylilangel0529

New member
hi im new hear i have 3 children who came back positive on newborn screening with r1162x mutation. one borderline sweat test and one normal. my 3rd chiild has not taken her sweat test yet. I had been tested when pregnant and i am not a carrier (based on the 24 or 27 they tested me for which included r1162x) my husband has never been tested. Has anyone ever had all their children come up positive on newborn screening and only one parent being a carrier:? is it possible my husband has CF and not know it. He is 37
 

mylilangel0529

New member
hi im new hear i have 3 children who came back positive on newborn screening with r1162x mutation. one borderline sweat test and one normal. my 3rd chiild has not taken her sweat test yet. I had been tested when pregnant and i am not a carrier (based on the 24 or 27 they tested me for which included r1162x) my husband has never been tested. Has anyone ever had all their children come up positive on newborn screening and only one parent being a carrier:? is it possible my husband has CF and not know it. He is 37
 

mommy2diego

New member
tammykrumrey...

thanks for insight. We'll see how it goes. So far, just the baby has been hosptialized. He is the only one culturing pseudomonas too.... The boys cultured staph and the baby didn't, now he does..... so there's no telling what will get passed and what wont. Encouraging to hear that your kids seem to not share everything. That's great! I guess the one advantage to having more then one cf'er is that they can relate to eachother. nobody gets left out of treatments, or clinic visits. I always laugh at the books that talk about other siblings being left out... not the case in our house...!

take care...and thanks for the reply
 

mommy2diego

New member
tammykrumrey...

thanks for insight. We'll see how it goes. So far, just the baby has been hosptialized. He is the only one culturing pseudomonas too.... The boys cultured staph and the baby didn't, now he does..... so there's no telling what will get passed and what wont. Encouraging to hear that your kids seem to not share everything. That's great! I guess the one advantage to having more then one cf'er is that they can relate to eachother. nobody gets left out of treatments, or clinic visits. I always laugh at the books that talk about other siblings being left out... not the case in our house...!

take care...and thanks for the reply
 

mommy2diego

New member
tammykrumrey...

thanks for insight. We'll see how it goes. So far, just the baby has been hosptialized. He is the only one culturing pseudomonas too.... The boys cultured staph and the baby didn't, now he does..... so there's no telling what will get passed and what wont. Encouraging to hear that your kids seem to not share everything. That's great! I guess the one advantage to having more then one cf'er is that they can relate to eachother. nobody gets left out of treatments, or clinic visits. I always laugh at the books that talk about other siblings being left out... not the case in our house...!

take care...and thanks for the reply
 

mommy2diego

New member
tammykrumrey...

thanks for insight. We'll see how it goes. So far, just the baby has been hosptialized. He is the only one culturing pseudomonas too.... The boys cultured staph and the baby didn't, now he does..... so there's no telling what will get passed and what wont. Encouraging to hear that your kids seem to not share everything. That's great! I guess the one advantage to having more then one cf'er is that they can relate to eachother. nobody gets left out of treatments, or clinic visits. I always laugh at the books that talk about other siblings being left out... not the case in our house...!

take care...and thanks for the reply
 

mommy2diego

New member
tammykrumrey...
<br />
<br />thanks for insight. We'll see how it goes. So far, just the baby has been hosptialized. He is the only one culturing pseudomonas too.... The boys cultured staph and the baby didn't, now he does..... so there's no telling what will get passed and what wont. Encouraging to hear that your kids seem to not share everything. That's great! I guess the one advantage to having more then one cf'er is that they can relate to eachother. nobody gets left out of treatments, or clinic visits. I always laugh at the books that talk about other siblings being left out... not the case in our house...!
<br />
<br />take care...and thanks for the reply
 
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