Diagnosed at Birth

[anonymous]

If you are diagnosed at birth is it still possible to have mild cf? I have only been on IV once 6 years ago and have been athletic my entire life. I am in the middle of a workout set right now.


My PFT's are in the 90's and take Creon 10 enzymes, anyone know the strength of those?

 

[JazzysMom]

So much depends on each CFers health. Some is compliance to treatments, some is environmental, some is pure luck. Although your dx was caught early allowing you the ability to catch things early before too much damage is done, it doesnt gaurantee the severity will be less. CF is progressive so eventually everyone gets worse. The ??? is when & unfortunately with the best statistics that is still a mystery!

 

[thelizardqueen]

I was diagnosed at 6 weeks old, and I'm 24 now. My CF is considered mild still. It all has to do with how diligent you are with your treatments, what gene mutation/s that you may have, etc. There are a lot of factors like Melissa said. That being said - I have one of the most severe genes: double delta f508, and I'm still mild when it comes to lungs. I've been on IV once, my pfts are in the 80s-90s.

 

[anonymous]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>thelizardqueen</b></i>

I was diagnosed at 6 weeks old, and I'm 24 now. My CF is considered mild still. It all has to do with how diligent you are with your treatments, what gene mutation/s that you may have, etc. There are a lot of factors like Melissa said. That being said - I have one of the most severe genes: double delta f508, and I'm still mild when it comes to lungs. I've been on IV once, my pfts are in the 80s-90s.</end quote></div>

Hi Liz

Charlotte here. How's it going? My daughter has F508 like you. If you don't mind me asking, do you have to take quite a lot of enzymes with your meals?

 

[thelizardqueen]

I take 5 enzymes per meal, although that's been standard for me since I was a kid. I think I may have to increase them now though (old age and all.)<img src="i/expressions/face-icon-small-wink.gif" border="0"> I take Creon 25's.

 

[wanderlost]

I was diagnosed at 6 weeks and I have mild Cf - no IVs, hospital stays or major illnesses as of yet. PFTs in the 70s

 

[anonymous]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>thelizardqueen</b></i>

I take 5 enzymes per meal, although that's been standard for me since I was a kid. I think I may have to increase them now though (old age and all.)<img src=""> I take Creon 25's.</end quote></div>

Do you take 5 enzymes for whole meal, ie including pudding if you have one?

Charlotte<img src="i/expressions/face-icon-small-wink.gif" border="0">

 

[anonymous]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>wanderlost</b></i>

I was diagnosed at 6 weeks and I have mild Cf - no IVs, hospital stays or major illnesses as of yet. PFTs in the 70s</end quote></div>

Hi, Cool tattoo by the way! Hope you don't mind me asking but do you take a lot of enzymes with your meals?

Charlotte

 

[thelizardqueen]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>anonymous</b></i>

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>thelizardqueen</b></i>



I take 5 enzymes per meal, although that's been standard for me since I was a kid. I think I may have to increase them now though (old age and all.)

I take Creon 25's.</end quote></div>



Do you take 5 enzymes for whole meal, ie including pudding if you have one?



Charlotte

</end quote></div>


5 enzymes for a whole meal, or a high fat snack. 3 enzymes for a pudding or something small and low fat. More so then not I'm usually eating high fat or large meals. I don't usually eat small snacks throughout the day - my appetite is HUGE.