fecal fat test update

[scd0420]

First I want to thank you for the responses to my posting about my Katie and the tests she's having. Right now, we are no closer to a diagnosis but her GI found fat in her stools on the most recent tests and wants to run another round of stool testing.

I spoke to a GI doctor at the Children's Hospital in Philly (a referral to me from a family member who knows the GI doc there) who is getting Katie in to her office in the next few weeks for a full workup. She also asked if Katie had a sweat test yet.

I love Katie's current GI and pulmonary doctor and plan to keep seeing them, but I am making the appointment with the Children's Hospital doctor. Maybe between the three of them, we can get to the bottom of this.

As far as what's been going on since the last time I was here, Katie woke up this past Saturday with a bloody nose (everywhere) and coughed up some blood mixed with phlegm and the pediatrician's office dx her with another bout of sinusitis. She had literally been off the augmenton for about a week when the symptoms began appearing again as bad as they were before the augmenton. I called the pulm who said to hang tight until our appt at the end of this week, but when I saw the blood, I took her over to the regular doctors. So now she's on a 14 day course of antibioctics again.

I hope all is well with you and your families.
Stephanie

 

[Lurking4now]

I'm glad to hear that you are going to see another doctor.  It
sounds like everything is moving in the right direction!
 Sorry to hear that your daughter is feeling so poorly.
 Pretty soon you'll know exactly what's going on and how to
help.  Good luck!

 

[julie]

I am glad you are making the appointment with childrens hospital, that's really the best thing for you to do at this point.

To be quite honest with you though, I would be shocked crapless if your daughter did NOT have CF, really I would be. With all the symptoms and problems and such you have explained, it sounds so classic. I say keep seeing the GI and pulmonary doctor, especially if you really like them... but I'd put all my energy into getting that childrens hospital appointment first-really.

Best of luck and please do keep us posted.

 

[scd0420]

Honestly it was down to this board that made me be so aggressive. I just figured that eventually the doctors would find out whatever it is that she has, but reading about how there were initial missed diagnosis and hearing symptoms that sounded like Katie, it made me become more aggressive and open in my expectations in getting to the bottom of this.

Her appointment is April 28, so maybe by then I'll have some definitive answers and we can start making Katie feel better. I didn't even take her to school today-I dropped her off at the babysitters b/c she looked so poorly...she was snoring all night, she was exhausted and her face looked really pale and tired, she kept complaining her tummy hurt and her legs hurt and her eyes hurt....poor kid. I just want her to feel better.

Stephanie