18 month old possible CF, question?

N

NoExcuses

New member
My mom has 10 brothers & sisters - no CF in my family. I was the 1st. Just cuz you have no CF in your family does not mean your kid can't have it.

In terms of growing out of pancreatic insufficiency - I don't think so. Either you are sufficient or you're not. It's like being lactose intolerant - you don't grow out of it.
 
M

Mommafirst

Guest
Hi Heather --
<br>
<br>
No I've never heard of growing out of pancreatic insufficiency. I was told Alyssa could become insufficient but it wasn't something that flip flops. <br>
<br>
We have no known CF in our family, I think most people on this site will respond the same -- as far as I've seen. I do know of a second cousin born in the 1940's who passed away at age 3 -- there is no one alive in my family to confirm this but I wonder if its possible that it was undiagnosed Cf. <br>
<br>
My daughter's mutations would not have come up on the pregnancy screen (I don't believe) so i think its possible to have it missed in the pregnancy and even the newborn screen -- but I may be wrond.<br>
<br>
By the way, this Newly Diagnosed board doesn't get much traffic -- you'll get more answers if you go to the Family board.<br>
<br>
Hang in there -- 2 months is miserable.
 
M

Mommafirst

Guest
Hi Heather --
<br>
<br>
No I've never heard of growing out of pancreatic insufficiency. I was told Alyssa could become insufficient but it wasn't something that flip flops. <br>
<br>
We have no known CF in our family, I think most people on this site will respond the same -- as far as I've seen. I do know of a second cousin born in the 1940's who passed away at age 3 -- there is no one alive in my family to confirm this but I wonder if its possible that it was undiagnosed Cf. <br>
<br>
My daughter's mutations would not have come up on the pregnancy screen (I don't believe) so i think its possible to have it missed in the pregnancy and even the newborn screen -- but I may be wrond.<br>
<br>
By the way, this Newly Diagnosed board doesn't get much traffic -- you'll get more answers if you go to the Family board.<br>
<br>
Hang in there -- 2 months is miserable.
 
M

Mommafirst

Guest
Hi Heather --
<br>
<br>
No I've never heard of growing out of pancreatic insufficiency. I was told Alyssa could become insufficient but it wasn't something that flip flops. <br>
<br>
We have no known CF in our family, I think most people on this site will respond the same -- as far as I've seen. I do know of a second cousin born in the 1940's who passed away at age 3 -- there is no one alive in my family to confirm this but I wonder if its possible that it was undiagnosed Cf. <br>
<br>
My daughter's mutations would not have come up on the pregnancy screen (I don't believe) so i think its possible to have it missed in the pregnancy and even the newborn screen -- but I may be wrond.<br>
<br>
By the way, this Newly Diagnosed board doesn't get much traffic -- you'll get more answers if you go to the Family board.<br>
<br>
Hang in there -- 2 months is miserable.
 
A

Alyssa

New member
Ditto to everything Heather said --

No family history -- most people will say that too

pregnancy screening -- it is very possible to miss many CF genes -- there are over 1500, they probably only screened for less than 100

insufficient doesn't go sufficient (at least I've never heard of it) and I was told the same thing.... sufficient could turn insufficient, but not all that likely -- usually what you start with is what you stay with.

Newly diagnosed doesn't get much traffic
 
A

Alyssa

New member
Ditto to everything Heather said --

No family history -- most people will say that too

pregnancy screening -- it is very possible to miss many CF genes -- there are over 1500, they probably only screened for less than 100

insufficient doesn't go sufficient (at least I've never heard of it) and I was told the same thing.... sufficient could turn insufficient, but not all that likely -- usually what you start with is what you stay with.

Newly diagnosed doesn't get much traffic
 
A

Alyssa

New member
Ditto to everything Heather said --

No family history -- most people will say that too

pregnancy screening -- it is very possible to miss many CF genes -- there are over 1500, they probably only screened for less than 100

insufficient doesn't go sufficient (at least I've never heard of it) and I was told the same thing.... sufficient could turn insufficient, but not all that likely -- usually what you start with is what you stay with.

Newly diagnosed doesn't get much traffic
 
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