Hi everyone!
Okay, we went to Brenner Children's hospital at Wake Forest two weeks ago. Saw the GI specialist, and I think I will like him. He listened well, and commited to help me get to the bottom of what is wrong.
After we discussed my daughter's symptoms, and then my son's, he went to talk to the CF drs. They decided we should do another sweat test on my daughter and do one on my son as well. They did both of them that day, and again, both were negative. So next week he is going to do a EGD and get a sample of her pancreatic fluid to analyze. He said he has only heard of one other child with pancreatic insufficiency without having CF or Schwacman's Syndrome. So, he is very interested in what is going on with her.
The GI doc thinks that the sweat test is enough proof for him that the kids don't have CF, but my gut feeling is still that the Genetic testing should be done. (Especially after what I have heard from you all!) Also, he was not at all familiar with the Ambry test.
So, I again, went out on a limb myself and contacted a Genetics clinic. It just so happened that they had a cancellation tomorrow!! Thank God! I specifically asked for the Ambry test, and they do offer it.
By the way, I had mentioned that my son had miraculously started pooping after starting the enzymes. He pooped very well for 3 1/2 weeks and then stopped again. I am truly at my wits end with all of this. The Ped. has absolutely no answers for me. I want to sit down and cry. It is just frustrating that NO ONE knows what is wrong!! Especially when I watch my 4 month old baby boy struggle with all his might just to have a bowel movement that's not even hard. I mean, if the stool was hard, I could understand why it was so difficult for him.
Sorry, I was rambling.
Anyway, I will let you know what happens tomorrow at the Genetics Clinic.
In Search of Answers,
Edna
daughter, 5; daughter, 2 1/2 ??CF; son, 4mos ??CF
Okay, we went to Brenner Children's hospital at Wake Forest two weeks ago. Saw the GI specialist, and I think I will like him. He listened well, and commited to help me get to the bottom of what is wrong.
After we discussed my daughter's symptoms, and then my son's, he went to talk to the CF drs. They decided we should do another sweat test on my daughter and do one on my son as well. They did both of them that day, and again, both were negative. So next week he is going to do a EGD and get a sample of her pancreatic fluid to analyze. He said he has only heard of one other child with pancreatic insufficiency without having CF or Schwacman's Syndrome. So, he is very interested in what is going on with her.
The GI doc thinks that the sweat test is enough proof for him that the kids don't have CF, but my gut feeling is still that the Genetic testing should be done. (Especially after what I have heard from you all!) Also, he was not at all familiar with the Ambry test.
So, I again, went out on a limb myself and contacted a Genetics clinic. It just so happened that they had a cancellation tomorrow!! Thank God! I specifically asked for the Ambry test, and they do offer it.
By the way, I had mentioned that my son had miraculously started pooping after starting the enzymes. He pooped very well for 3 1/2 weeks and then stopped again. I am truly at my wits end with all of this. The Ped. has absolutely no answers for me. I want to sit down and cry. It is just frustrating that NO ONE knows what is wrong!! Especially when I watch my 4 month old baby boy struggle with all his might just to have a bowel movement that's not even hard. I mean, if the stool was hard, I could understand why it was so difficult for him.
Sorry, I was rambling.
Anyway, I will let you know what happens tomorrow at the Genetics Clinic.
In Search of Answers,
Edna
daughter, 5; daughter, 2 1/2 ??CF; son, 4mos ??CF