Cystic Fibrosis Support Group

hi karen my little girl was diagnosed on guthrie test (delta f 508)from me) pretty common then a sweat test 3 weeks later confermed her dad had a rare mutation not yet found (nine years later still nothing). can i ask why did the do a sweat test with out a positive guthire test result was there issues at birth or weight loss etc

Matilda tested negative at birth but from about 5 weeks old I noticed she was always hungry and had oily stools. I was taking her on and off to the doctors about it but they kept saying there was nothing wrong with her and she was small because she was 7 weeks prem. I had a feeling it was cf, I finally got the answer when she was 14 months old. Needless to say I have changed doctors as the peadiatrician who didnt diagnose her was the head of the cf clinic. She is now 26 months old and weighs 11 kgs. Still getting oily poos and we are waiting for test results to see if she is a coeliac, I am and she has signs of it. I hope she isnt. How is your little girl going? Cheers Karen

she is ok thanks for asking she is pancreatic sufficiant thankfully so no enzymes here but she is a very little girl and need the high fat high salt diet she lost 1000grms when she was born and i was blamed for that until diagnosis i thaught i had not feed her right too. she is 9 now and battels the constant chest infections but to date has no scaring on her lungs i have also been able to keep her away from super bugs so far something i am proud of cause i know how hard it is when my friends cf kids get psudomonis, on a whole we do well she is sick right now but batteling through like always she is a real trooper, jo was just tested for ciliacs and some other things because she gets terrible tummy aches but nothing came back. Dose your girl have much chest stuff or is it more tummy trouble

She has only had one chest infection so far but had swine flu also in july but got over it pretty well with the help of tamiflu. I still panic over every little cough but I guess with time I will learn the difference. Would be nice to keep in touch as I am pretty isolated and besides this site I dont have anybody to talk to about cf. Cheers Karen

Hi Karen. Im from the United States also. My son is now 18 yrs old with CF, CFRD and Asthma he was diagnosed with CF at 6 weeks old from a sweet test. he is also delta f 508 from myself and my husband. we had the genetic testing done as well. Mikey is doing great he was only in hospital 3 times since birth, 2 for sinus surgery and 1 for his first tune up he has had only 2 picc's.
his last picc was about 5 yrs ago. Mikey has both lungs and GI issues and is on enzymes. but at 18 yrs old now is doing great. PFT's are always in the upper 90's and sometimes lower 100's. he does do the growth hormone shots for growth and has grown and put on weight since starting the shots at 12 yrs old, but what i find i love about the shots ( just my thoughts ) are his lungs I swear because of the shots his lung function is so good. there is no study to prove this but to me from what im seeing its improved it so much.
on the down side of the growth shots he does now have cfrd but is well controlled with meds.
Karen if you have any questions and if i can help ill do my best you can send me an email
slpwhnimdead04@aol.com
hope all is well.
kat