I am so glad to have found this forum. I am a mom of 7 children, the youngest, 22 mos., and not growing. Eli has had choking episodes, diarhea, congestion, ear infections, and food allergies since he was born. When I kept him off his food allergies (milk, eggs, gluten and peaches) he did fine. But last winter he got very very sick and lost a lot of weight. The Dr. thought he was having asthma (siblings have it), but he has never really been well since. This summer, I pulled out his outgrown summer clothes from last year and he is still wearing them. He is falling off the growth charts, has constant congestion and diarhea and is not gaining weight! (he does gain a little height, but is actually lower in height than in weight!) He looks like a one-year old, though he is almost two. Our Dr. finally did a sweat test, and it was negative, but they did not tell me how negative. Now we are in a new area and his new Dr. wants more CF testing done. I thought a negative sweat test was conclusive. Not so? I hate for him to have blood tests, because he has NO veins that can be drawn from. Last time, they took 19 vials from his finger!!! ( That must be a record.) All of his testing (Celiacs, CBC, Allergies) were normal. Perhaps some of you can shed some light on this for me. Would love to have some input.ThanksD. Hamp
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Is more testing necessary?
- Thread starter anonymous
- Start date
i went through the same problem as a kid . i am 21 now .i was frequently sick during my childhood .i kept having frequent pneumonias and was always coughing . and was always below my average weight . my parents kept taking me to different doctors and no one could figure out what i had . i wasn't diagnosed with cystic fibrosis until i was 8 yrs old . there a genetic test to determine if your child has cystic fibrosis . there are also similar diseases that look like cystic fibrosis too . they could test for those too .
I know this must be soo stressful not knowing what is wrong with your son. I know that if a sweat test is not always accurate. It should be done at a CF center because it can be done incorrectly, but CF centers are most likely to do it right the first time. I was given a sweat test at 14 and even though it came out positive my doctor wanted me to have a blood test to make sure and sure enough I have the most common mutations. I would have him rechecked because you want to make sure you can safely rule out CF so you don't overlook it. I was actually tested for CF shortly after birth because it was routine at the hospital I was born at. It came out negative and my parents never thought about it again until 14 years later when I stopped growing so my new doc had me retested and to everyones shock it was positive. So I would get him checked with a sweat test again at a CF center and then maybe a blood test so that you can be 100% sure.Emily 19 w/CF