Cystic Fibrosis?

[Chuck-PA]

The breath test is to check for a carbohydrate problem--which would be lactase I am guessing. Everything that I have read points to lactose--lactase, but he specifically said Carbs---I know they break down and such---This will be a fasting test---and it will take I think 3 hours to get it done. We go in--they check her--then we drink a solution--then they check her over the next couple of hours. We will get those results that day.

Heather

This test sounds just like the Oral Glucose Test. My son has gotten this test done once a year for the last three years. This test checks the blood sugar level.

 

[pigget74]

This test sounds just like the Oral Glucose Test. My son has gotten this test done once a year for the last three years. This test checks the blood sugar level.

We are not going to test the blood at all. They are testing her breath for hydrogen. It does sound a lot like the glucose test now that you mention it.

 

[Chuck-PA]

My family and I want to wish you and your family the best as you go through the testing process until they find out what may be causing the problems that your little one is experiencing.

 

[sacall]

I might call our Ped. Gastro. and see if he can go ahead and set up an appt. at the University for the sweat test while we are there next week. Not sure really how to handle this.

Heather

I think your appointment was for today. I'm hoping that were able to do the sweat test and hoping you find some answers.

Stacy

 

[pigget74]

Sorry to take so long to get back to you. We spent the entire day there--well between the hospital and the office. SHe gained in 6 weeks 1 pound and grew 1.5 inches. All the tests that he has done either were negative orr came back in normal range--except one her PH. There was no fat in her stool. He PH is low and that is all I know. As of right now he is not as concerned as he was just last month because of her significant gain. This is the most she has ever done. We are still having bad diapers so he wants us to add 8grams of fiber and if that does not work then he will do the biopsies. He thinks that whatever it is --maybe she is outgrowing it or her body is starting to mature. At this point only time will tell. We are doing weight checks every 2 week for a while just to make sure she doesn't start to lose again. If so--then he will re think our plan. He did not even mention CF this time.

 

[Chuck-PA]

Thanks for letting us know what happened at the hospital visit.

I hope all is looking up for your daughter and your family.
It sure does sound like it.

 

[pigget74]

Update---since we have added the 8grams of fibe a day --we have gotten much worse. Today we went for more labs---a new CBC and then they added a Liver Panel. The original Dr. that we wanted to see is on call this week--her husband is who we see. They each rotate 6 mths and the other 6 mths they do research. Well she just started March 1 her 6 mths of research. She wanted to see Rebekah, but we could not get in in time. Well, I called on Monday like I was supposed to and gave them an update. We scheduled the biopsies. Yesterday they the nurse called back and asked how she was doing. She said that Dr. on call was very adament that we dothe biopsies, but also wanted us to do these labs. Depending on these we will either have the biopsies on June 3rd or they will move them up. She actually wanted sooner, but due to State Testing and 9wks exams this is the best we could do. My principal has given me permission to miss these if the Dr. feels it is urgent or whatever to have them done earlier. We shall see.