I'm In Shock

amyr

New member
<span style="font-family: 'Verdana','sans-serif'; color: black; font-size: 9pt;">I have been posting about my kids for years three with what we are calling "Atypical CF". I have has similar issues since childhood, not as bad as my kids until the past few years. They discovered I am Anemic and ruled out any bleeding causes. I went to a new GI for yet another evual because the only way my reflux is controlled on a double dose of nexium is with enzymes and the only way I can have food not go right through me is with enzymes.
<span style="font-family: 'Verdana','sans-serif'; color: black; font-size: 9pt;">My tests came back negative for Celiacs, Crohnes & Colitis again and I am pancreatic insufficient.That combined with mylungdisease and recurrent sinus and nasal polyps she told me this really looks like CF and said I need to go to Hopkins because my issues are out of her relm.
<span style="font-family: 'Verdana','sans-serif'; color: black; font-size: 9pt;">I guess the really good news is Ijust turned 41<img src="i/expressions/face-icon-small-smile.gif" border="0"> Who knows maybe my kids and Itruly arean anomly in the CF world or maybe we have something that they haven't discovered yet that completely mimics CFto a lesser degree.
 

amyr

New member
<span style="font-family: 'Verdana','sans-serif'; color: black; font-size: 9pt;">I have been posting about my kids for years three with what we are calling "Atypical CF". I have has similar issues since childhood, not as bad as my kids until the past few years. They discovered I am Anemic and ruled out any bleeding causes. I went to a new GI for yet another evual because the only way my reflux is controlled on a double dose of nexium is with enzymes and the only way I can have food not go right through me is with enzymes.
<span style="font-family: 'Verdana','sans-serif'; color: black; font-size: 9pt;">My tests came back negative for Celiacs, Crohnes & Colitis again and I am pancreatic insufficient.That combined with mylungdisease and recurrent sinus and nasal polyps she told me this really looks like CF and said I need to go to Hopkins because my issues are out of her relm.
<span style="font-family: 'Verdana','sans-serif'; color: black; font-size: 9pt;">I guess the really good news is Ijust turned 41<img src="i/expressions/face-icon-small-smile.gif" border="0"> Who knows maybe my kids and Itruly arean anomly in the CF world or maybe we have something that they haven't discovered yet that completely mimics CFto a lesser degree.
 
W

welshwitch

Guest
Wow! Crazy news but I am glad you are getting treated!
 
W

welshwitch

Guest
Wow! Crazy news but I am glad you are getting treated!
 

Melissa75

Administrator
I hope you get some answers. Please share what you find out; I am always curious about cases of late dx (or low sweat test, which I have).
 

Melissa75

Administrator
I hope you get some answers. Please share what you find out; I am always curious about cases of late dx (or low sweat test, which I have).
 
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