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I have been on here before, at least a year ago. We still don't have an official diagnosis of CF but my 4 yr old has been pancreatic insufficient and my now 1 yr old has been diagnosed pancreatic insufficient. I am having a REALLY hard time giving him the enzymes when he wants to breastfeed...

I have been here before, quite a while ago, going through the testing process for CF. My sons sweat tests were 41 and 31. They did the full ambry genetics test and found nothing except he is 7T/7T poly T Variant. He has no lung issues, just pancreatic insufficient. He is still having a VERY...

I was year almosta year back. My son, Kaiden, has had FTT and greasy, bulk stools since he was born. They found out he had Pancreatic Amylase Deficiency at 15 months old. Which made them do a sweat test, two came back borderline. I pushed for the full ambry genetics test, which came back...

Kaiden doesnt have CF, but figured I would stick around since this is the only place i can get info on pancreatic insufficiency. When Kaiden gets sick, even just a cold, he ends up getting diahrea with undigested food and it stinks!! just like before we started the pancrease. and it lasts...

WHEW!!! His pulmonologist said there is a 1% chance he has CF with no known mutations and that they could doa throat culture to see if he tests positive for CF bacteria. Should I just play everything by ear or push for the throat culture now??

My husband called this morning while i was gone to ask for the results. The nurse called back and said that no genes were found, but the 7T/7T Poly T variant showed up. I dont know what this means and neither did the nurse, the Dr. has yet to review and may not be in today. He is...

from the ambry test??? Ambry recieved my sons blood on the 12th. Its the 2nd of May now and still nothing. Do you think that means its a good possibility he has no genes?? Im curious as to how long it was before you got the results that they had a gene or not.. THANKS!

we went to his appt and they did the second sweat test. His first one was a 41, his second sweat test was only a 30. They are doing all these tests because of his pancreatic insufficiency. But with his sweat test only being 30 do you guys think its a good chance he doesnt have CF? or half...

today we are heading out for Kaidens appt tomorrow (the hospital is 6 hrs away) and ive been meaning to ask if excessive thirst was a symptom of CF?? Ever since he started on water he has to have it several times a night. He wakes up desperate and in a panic for it. He also drinks tons...

an appt at the Stanford Childrens Hospital on Monday at 9:30. Looks like its going to be a 2 day appt. He is meeting with the Pulmonary specialist. They only do sweat tests on tuesday. And we are waiting for a call back on when the genetics test will be done (in that time frame). glad this is...

Ive been on here several times before. My son has had malabsorption problems since he was born. he is off the scales for weight, and now almost off for height. He has had tests since he was 2 months to figure it all out and we finally found out he is Pancreatic Insufficient in Amylase, and...

My sons Genetic test came back normal. They only tested for the 32 most common mutations. The reason they tested is because he has had GI problems since birth and they finally found out he is pancreatic insufficient and is now on enzymes, and his sweat test came back 44. He has never had an...

Hello everyone, I dont know if i belong here, but im curious as to what others think and have gone through while i wait! My son Kaiden is 18 months old and has had GI issues since birth and has gone through all kinds of different tests. A few months ago they ordered the sweat test, which...

Hello everyone, I dont know if i belong here, but im curious as to what others think and have gone through while i wait! My son Kaiden is 18 months old and has had GI issues since birth and has gone through all kinds of different tests. A few months ago they ordered the sweat test, which...