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This was absolutely our experience before our diagnosis. I never counted the calories but our daughter was constantly hungry and constantly eating. She fell from the 95 percentile at birth to below the 25 percentile by the time she was diagnosed (at age 3 yrs 3 months).

This was absolutely our experience before our diagnosis. I never counted the calories but our daughter was constantly hungry and constantly eating. She fell from the 95 percentile at birth to below the 25 percentile by the time she was diagnosed (at age 3 yrs 3 months).

This was absolutely our experience before our diagnosis. I never counted the calories but our daughter was constantly hungry and constantly eating. She fell from the 95 percentile at birth to below the 25 percentile by the time she was diagnosed (at age 3 yrs 3 months).

We are only 4 months into our diagnosis so I can't answer your question directly. However, I felt compelled to respond that you are right where I was about a month into our dx. And that is - I wanted an answer as to how bad it will get. Its an incredibly strange position to be in. We are...

We are only 4 months into our diagnosis so I can't answer your question directly. However, I felt compelled to respond that you are right where I was about a month into our dx. And that is - I wanted an answer as to how bad it will get. Its an incredibly strange position to be in. We are...

We are only 4 months into our diagnosis so I can't answer your question directly. However, I felt compelled to respond that you are right where I was about a month into our dx. And that is - I wanted an answer as to how bad it will get. Its an incredibly strange position to be in. We are...

Debbie - I sent you a private message as well. Your story of oil and loose stools, yet your daughter is not on enzymes, alarms me. The oil floating in the toilet and the frequency and looseness of the stools, the constant tummy aches, etc. is how Katy was diagnosed. Please please your...

Debbie - I sent you a private message as well. Your story of oil and loose stools, yet your daughter is not on enzymes, alarms me. The oil floating in the toilet and the frequency and looseness of the stools, the constant tummy aches, etc. is how Katy was diagnosed. Please please your...

Debbie - I sent you a private message as well. Your story of oil and loose stools, yet your daughter is not on enzymes, alarms me. The oil floating in the toilet and the frequency and looseness of the stools, the constant tummy aches, etc. is how Katy was diagnosed. Please please your...

What a sweet story! Aren't you glad you could make that wish come true for her! I can just see the frantic last-minute trip to the store........... I wonder if she told her school-friends when they got back from winter break? As for Katy's salty cravings - she asks for and eats pretzels...

What a sweet story! Aren't you glad you could make that wish come true for her! I can just see the frantic last-minute trip to the store........... I wonder if she told her school-friends when they got back from winter break? As for Katy's salty cravings - she asks for and eats pretzels...

What a sweet story! Aren't you glad you could make that wish come true for her! I can just see the frantic last-minute trip to the store........... I wonder if she told her school-friends when they got back from winter break? As for Katy's salty cravings - she asks for and eats pretzels...

Don't get us started on MD's and there stubborness/ignorance.........! We fired our old pediatrican (that's the short version of that story). Last week, my older girl had to see the on-call doctor in the family practice that we go to now. We got to talking about Katy's CF and I PROMISE you...

Don't get us started on MD's and there stubborness/ignorance.........! We fired our old pediatrican (that's the short version of that story). Last week, my older girl had to see the on-call doctor in the family practice that we go to now. We got to talking about Katy's CF and I PROMISE you...

Don't get us started on MD's and there stubborness/ignorance.........! We fired our old pediatrican (that's the short version of that story). Last week, my older girl had to see the on-call doctor in the family practice that we go to now. We got to talking about Katy's CF and I PROMISE you...

Tammy - we had the rectal prolapse thing, too, and also the pediatrician in denial; I believe I'll be frustrated about that forever....... np2 - glad to hear an update from you on your search for answers. Our daughter is double DF508. Let us know about today's results. Thanks everyone for...

Tammy - we had the rectal prolapse thing, too, and also the pediatrician in denial; I believe I'll be frustrated about that forever....... np2 - glad to hear an update from you on your search for answers. Our daughter is double DF508. Let us know about today's results. Thanks everyone for...

Tammy - we had the rectal prolapse thing, too, and also the pediatrician in denial; I believe I'll be frustrated about that forever....... np2 - glad to hear an update from you on your search for answers. Our daughter is double DF508. Let us know about today's results. Thanks everyone for...

This is interesting because Katy has been complaining of her tummy hurting for about 10 days now. It is almost like pre-diagnosis tummy complaints. Her stools are definitely post-dx 'normal', as in mostly sinkers, no grease, but she is sometimes having to go three times within 30 minutes to...

This is interesting because Katy has been complaining of her tummy hurting for about 10 days now. It is almost like pre-diagnosis tummy complaints. Her stools are definitely post-dx 'normal', as in mostly sinkers, no grease, but she is sometimes having to go three times within 30 minutes to...