What's new
By:
Filters
Cystic Fibrosis Forum (EXP)

This is a sample guest message. Register a free account today to become a member! Once signed in, you'll be able to participate on this site by adding your own topics and posts, as well as connect with other members through your own private inbox!

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
 
You must log in or register to reply here.
Top