Question about newborn screening

[jdprecious]

So, we don't know which side of the family the CF gene comes from (my mom's side or my dad's). I was always worrying for my 3 younger sisters (2 from my mom's second marriage, one from my dad's second marriage) whether or not they would have the CF gene and their children could be at risk for CF. My sisters haven't started having children yet, Thank God!!! But my 21 year old cousin has. She got preggo on her honeymoon and just recently gave birth to a sweet little baby girl, Kinsley.

Now, here is where I start to worry. Kinsely is suuuuuper teeny tiny. Barely over six lbs at full term. Amanda (my cousin) is no small thing so she would have a good 7 or 8 lb baby easy sorta like I did. Also, Kinsely is only 3 weeks old and stays constantly hungry. She is already eating almost 4 to 5 ounces at each feeding and still is barely over six lbs. The docs haven't said failure to thrive yet. But I am afraid they will at her next week apt.

So, now for my question. I am not sure if Kinsely had newborn screening done yet but I put a phone call into my aunt to find out. Does this newborn screening test for all variants of CF??? Could the screening rule out CF completely or only for the most common variants?? I am so worried my sweet second cousin could have CF. I don't want to alarm Amanda or my aunt either with all this mess but what she told me yesterday at the bbq sounded exactly like my experience with newborn Jaelyn. Now, I am worried sick.

 

[jdprecious]

So, we don't know which side of the family the CF gene comes from (my mom's side or my dad's). I was always worrying for my 3 younger sisters (2 from my mom's second marriage, one from my dad's second marriage) whether or not they would have the CF gene and their children could be at risk for CF. My sisters haven't started having children yet, Thank God!!! But my 21 year old cousin has. She got preggo on her honeymoon and just recently gave birth to a sweet little baby girl, Kinsley.

Now, here is where I start to worry. Kinsely is suuuuuper teeny tiny. Barely over six lbs at full term. Amanda (my cousin) is no small thing so she would have a good 7 or 8 lb baby easy sorta like I did. Also, Kinsely is only 3 weeks old and stays constantly hungry. She is already eating almost 4 to 5 ounces at each feeding and still is barely over six lbs. The docs haven't said failure to thrive yet. But I am afraid they will at her next week apt.

So, now for my question. I am not sure if Kinsely had newborn screening done yet but I put a phone call into my aunt to find out. Does this newborn screening test for all variants of CF??? Could the screening rule out CF completely or only for the most common variants?? I am so worried my sweet second cousin could have CF. I don't want to alarm Amanda or my aunt either with all this mess but what she told me yesterday at the bbq sounded exactly like my experience with newborn Jaelyn. Now, I am worried sick.

 

[jdprecious]

So, we don't know which side of the family the CF gene comes from (my mom's side or my dad's). I was always worrying for my 3 younger sisters (2 from my mom's second marriage, one from my dad's second marriage) whether or not they would have the CF gene and their children could be at risk for CF. My sisters haven't started having children yet, Thank God!!! But my 21 year old cousin has. She got preggo on her honeymoon and just recently gave birth to a sweet little baby girl, Kinsley.

Now, here is where I start to worry. Kinsely is suuuuuper teeny tiny. Barely over six lbs at full term. Amanda (my cousin) is no small thing so she would have a good 7 or 8 lb baby easy sorta like I did. Also, Kinsely is only 3 weeks old and stays constantly hungry. She is already eating almost 4 to 5 ounces at each feeding and still is barely over six lbs. The docs haven't said failure to thrive yet. But I am afraid they will at her next week apt.

So, now for my question. I am not sure if Kinsely had newborn screening done yet but I put a phone call into my aunt to find out. Does this newborn screening test for all variants of CF??? Could the screening rule out CF completely or only for the most common variants?? I am so worried my sweet second cousin could have CF. I don't want to alarm Amanda or my aunt either with all this mess but what she told me yesterday at the bbq sounded exactly like my experience with newborn Jaelyn. Now, I am worried sick.

 

[jdprecious]

So, we don't know which side of the family the CF gene comes from (my mom's side or my dad's). I was always worrying for my 3 younger sisters (2 from my mom's second marriage, one from my dad's second marriage) whether or not they would have the CF gene and their children could be at risk for CF. My sisters haven't started having children yet, Thank God!!! But my 21 year old cousin has. She got preggo on her honeymoon and just recently gave birth to a sweet little baby girl, Kinsley.

Now, here is where I start to worry. Kinsely is suuuuuper teeny tiny. Barely over six lbs at full term. Amanda (my cousin) is no small thing so she would have a good 7 or 8 lb baby easy sorta like I did. Also, Kinsely is only 3 weeks old and stays constantly hungry. She is already eating almost 4 to 5 ounces at each feeding and still is barely over six lbs. The docs haven't said failure to thrive yet. But I am afraid they will at her next week apt.

So, now for my question. I am not sure if Kinsely had newborn screening done yet but I put a phone call into my aunt to find out. Does this newborn screening test for all variants of CF??? Could the screening rule out CF completely or only for the most common variants?? I am so worried my sweet second cousin could have CF. I don't want to alarm Amanda or my aunt either with all this mess but what she told me yesterday at the bbq sounded exactly like my experience with newborn Jaelyn. Now, I am worried sick.

 

[jdprecious]

So, we don't know which side of the family the CF gene comes from (my mom's side or my dad's). I was always worrying for my 3 younger sisters (2 from my mom's second marriage, one from my dad's second marriage) whether or not they would have the CF gene and their children could be at risk for CF. My sisters haven't started having children yet, Thank God!!! But my 21 year old cousin has. She got preggo on her honeymoon and just recently gave birth to a sweet little baby girl, Kinsley.

Now, here is where I start to worry. Kinsely is suuuuuper teeny tiny. Barely over six lbs at full term. Amanda (my cousin) is no small thing so she would have a good 7 or 8 lb baby easy sorta like I did. Also, Kinsely is only 3 weeks old and stays constantly hungry. She is already eating almost 4 to 5 ounces at each feeding and still is barely over six lbs. The docs haven't said failure to thrive yet. But I am afraid they will at her next week apt.

So, now for my question. I am not sure if Kinsely had newborn screening done yet but I put a phone call into my aunt to find out. Does this newborn screening test for all variants of CF??? Could the screening rule out CF completely or only for the most common variants?? I am so worried my sweet second cousin could have CF. I don't want to alarm Amanda or my aunt either with all this mess but what she told me yesterday at the bbq sounded exactly like my experience with newborn Jaelyn. Now, I am worried sick.

 

[thefrogprincess]

I'm assuming that your cousin lives in FL too? Do you know for a fact that FL screens for CF in their newborn screening? If I were you I would check out the state's health department web site to find out for sure. It should also tell you how many mutations they check for. You also need to find out if your cousin told her pediatrician about the family history of CF. If she did then any responsible ped should test the baby anyway. They can compair the baby's genome to yours and your daughters, that can help them get the results faster since they can check for those mutations first. Good luck!

 

[thefrogprincess]

I'm assuming that your cousin lives in FL too? Do you know for a fact that FL screens for CF in their newborn screening? If I were you I would check out the state's health department web site to find out for sure. It should also tell you how many mutations they check for. You also need to find out if your cousin told her pediatrician about the family history of CF. If she did then any responsible ped should test the baby anyway. They can compair the baby's genome to yours and your daughters, that can help them get the results faster since they can check for those mutations first. Good luck!

 

[thefrogprincess]

I'm assuming that your cousin lives in FL too? Do you know for a fact that FL screens for CF in their newborn screening? If I were you I would check out the state's health department web site to find out for sure. It should also tell you how many mutations they check for. You also need to find out if your cousin told her pediatrician about the family history of CF. If she did then any responsible ped should test the baby anyway. They can compair the baby's genome to yours and your daughters, that can help them get the results faster since they can check for those mutations first. Good luck!

 

[thefrogprincess]

I'm assuming that your cousin lives in FL too? Do you know for a fact that FL screens for CF in their newborn screening? If I were you I would check out the state's health department web site to find out for sure. It should also tell you how many mutations they check for. You also need to find out if your cousin told her pediatrician about the family history of CF. If she did then any responsible ped should test the baby anyway. They can compair the baby's genome to yours and your daughters, that can help them get the results faster since they can check for those mutations first. Good luck!

 

[thefrogprincess]

I'm assuming that your cousin lives in FL too? Do you know for a fact that FL screens for CF in their newborn screening? If I were you I would check out the state's health department web site to find out for sure. It should also tell you how many mutations they check for. You also need to find out if your cousin told her pediatrician about the family history of CF. If she did then any responsible ped should test the baby anyway. They can compair the baby's genome to yours and your daughters, that can help them get the results faster since they can check for those mutations first. Good luck!

 

[thefrogprincess]

You know what, this was bugging me so I checked into FL's status on CF newborn screening. They JUST added it and the screening is NOT required until Sept 17th of this year. If I were you I would talk to your cousin NOW! Yes, it will scare her, but we all know the benefits of early diagnosis.

<a target=_blank class=ftalternatingbarlinklarge href="http://www.doh.state.fl.us/Cms/nbscreen.html
">http://www.doh.state.fl.us/Cms/nbscreen.html
</a>
This link goes to the letter that the FL Dep of Health sent out regarding CF screening to doctors.

 

[thefrogprincess]

You know what, this was bugging me so I checked into FL's status on CF newborn screening. They JUST added it and the screening is NOT required until Sept 17th of this year. If I were you I would talk to your cousin NOW! Yes, it will scare her, but we all know the benefits of early diagnosis.

<a target=_blank class=ftalternatingbarlinklarge href="http://www.doh.state.fl.us/Cms/nbscreen.html
">http://www.doh.state.fl.us/Cms/nbscreen.html
</a>
This link goes to the letter that the FL Dep of Health sent out regarding CF screening to doctors.

 

[thefrogprincess]

You know what, this was bugging me so I checked into FL's status on CF newborn screening. They JUST added it and the screening is NOT required until Sept 17th of this year. If I were you I would talk to your cousin NOW! Yes, it will scare her, but we all know the benefits of early diagnosis.

<a target=_blank class=ftalternatingbarlinklarge href="http://www.doh.state.fl.us/Cms/nbscreen.html
">http://www.doh.state.fl.us/Cms/nbscreen.html
</a>
This link goes to the letter that the FL Dep of Health sent out regarding CF screening to doctors.

 

[thefrogprincess]

You know what, this was bugging me so I checked into FL's status on CF newborn screening. They JUST added it and the screening is NOT required until Sept 17th of this year. If I were you I would talk to your cousin NOW! Yes, it will scare her, but we all know the benefits of early diagnosis.

<a target=_blank class=ftalternatingbarlinklarge href="http://www.doh.state.fl.us/Cms/nbscreen.html
">http://www.doh.state.fl.us/Cms/nbscreen.html
</a>
This link goes to the letter that the FL Dep of Health sent out regarding CF screening to doctors.

 

[thefrogprincess]

You know what, this was bugging me so I checked into FL's status on CF newborn screening. They JUST added it and the screening is NOT required until Sept 17th of this year. If I were you I would talk to your cousin NOW! Yes, it will scare her, but we all know the benefits of early diagnosis.

<a target=_blank class=ftalternatingbarlinklarge href="http://www.doh.state.fl.us/Cms/nbscreen.html
">http://www.doh.state.fl.us/Cms/nbscreen.html
</a>
This link goes to the letter that the FL Dep of Health sent out regarding CF screening to doctors.

 

[Marjolein]

I think your cousin should let the doctors know about the CF history in the family. Like Jessi said. When they haven't done the newborn screening then they could always ask the doctors to test the baby for the mutations Jaelyn has. I see she is ddf508 so if they have done the newborn test then i think they must be searching for that one. As it is maybe the most common one there is.

Good luck! I hope it will turn out that she is absolutely healthy!

 

[Marjolein]

I think your cousin should let the doctors know about the CF history in the family. Like Jessi said. When they haven't done the newborn screening then they could always ask the doctors to test the baby for the mutations Jaelyn has. I see she is ddf508 so if they have done the newborn test then i think they must be searching for that one. As it is maybe the most common one there is.

Good luck! I hope it will turn out that she is absolutely healthy!

 

[Marjolein]

I think your cousin should let the doctors know about the CF history in the family. Like Jessi said. When they haven't done the newborn screening then they could always ask the doctors to test the baby for the mutations Jaelyn has. I see she is ddf508 so if they have done the newborn test then i think they must be searching for that one. As it is maybe the most common one there is.

Good luck! I hope it will turn out that she is absolutely healthy!

 

[Marjolein]

I think your cousin should let the doctors know about the CF history in the family. Like Jessi said. When they haven't done the newborn screening then they could always ask the doctors to test the baby for the mutations Jaelyn has. I see she is ddf508 so if they have done the newborn test then i think they must be searching for that one. As it is maybe the most common one there is.

Good luck! I hope it will turn out that she is absolutely healthy!

 

[Marjolein]

I think your cousin should let the doctors know about the CF history in the family. Like Jessi said. When they haven't done the newborn screening then they could always ask the doctors to test the baby for the mutations Jaelyn has. I see she is ddf508 so if they have done the newborn test then i think they must be searching for that one. As it is maybe the most common one there is.

Good luck! I hope it will turn out that she is absolutely healthy!