My Nephew is having a Sweat Test on the 11th...

Hello I have a Daughter that is going to be 2 in march and me and my husband just found out last august (2006) that she has Cystic Fibrosis. we were very upset when we found out. but she is doing very well. She also has a tremendous amout of energy, she won't stop running around unless she absolutely has to, it even takes her an hour or so to fall asleep even if she is really tired she will sit in her crib and talk. I understand that treatments for cf have come very far within the past years. another common sign is runny bowels. or many a day, they smell very strong also. also cf patients sweat a lot. and there skin tastes salty, especially when they sweat. my daughter is on pulmacourt 2x a day, xopenex 2x a day, an enzyme to absorb fat she takes that with every meal and snack ( they are very important), vitamax once a day, zantac 2x a day. it is a lot of meds but she is very healthy. each time we go to the doc her lungs are very clear. cf patients don't absorb fat unless they are taking the enzymes that is why there bowels are runny if not on meds. and the vitamins they take are water soluble so they absorb with water instead of in fats. i have learned a lot in the past few months i had never heard of the disease until i found out she had it. i am just so thankful that her lungs are nice and clear. we just have a hard time getting her to gain weight. she is 21.5lbs. she has to drink 4-6 pediasures a day to make sure she gets enough of everything. sometimes she eats good and other times she doesn't i think it has a lot to do with her age being picky and all. because before we knew she had cf she used to eat everything you gave her and she would eat all day that was because her body didn't absorb the fat. I just recently had a baby boy and we found out that he is only a carrier of cf which we are very happy about because 1 out of 4 in each pregnancy could have the cf disease, which i didn't know till we found out she had cf.

I hope this information helped you out i hope everything goes well. kepp me posted on the results.

Melissa

they usually get the results the next day or if they write STAT on the order they will have the results within a few hours. the first test i had done they called me the next day and the second on we waited at the doctors for the results so it took about 2 hours to get them the second time. I hope all goes well for him.

Melissa

my daughters test was positive and they ran a second to be positive cause it is a disease and they want to make sure it is true. is he going to an acredited cf center?

melissa

Hello Ducky and welcome to HW!

about the sweat tests (in my experience), two tests on different days are usually required in determining a diagnosis.  What I have been told is that there can be a false negative (ex. a negative result on a sweat test but two cf mutations found in dna), but never a false positive (ex. once tested positive on a sweat test, the diagnosis is almost always positive for CF).

I don't believe that club feet is indictive of CF, I think what you are refering to is clubbing of the nail beds on the hands and feet.

Keep us posted on how your nephew does and hope you all find some answers.

Cheers!

---

Sandra

Be who you are and say what you feel, because those who mind don't matter and those who matter don't mind. ~Dr. Seuss

 

Cystic Fibrosis Co-Mod

Ducky - I hope for your family's sake that the sweat test is negative and you have "dodged the bullet", but in case you have heard that the test was positive...

Please try not to be too distressed. My son was not diagnosed until he was eight. The fact that your nephew is five and was not diagnosed earlier is actually positive in a strange kind of way. It means that his condition was not so serious that the diagnosis would have been obvious. So, he is actually doing much much better than the average kid with c.f.

My son is now almost sixteen and doing well. He can participate in most physical activities (including skiing and weight training) that are interesting to him. He has a girlfriend. He goes to school every other day and does online electronic high school every other day. This schedule makes it so that he gets enough social interaction but also has flexibility with when he does school work and how much sleep he gets, etc. His life is actually quite normal. He is hospitalized about once a year but he kind of sees it as a "vacation" from school and has a good attitude about it.

Speaking of school...It's very important that your nephew's parent start the paper work to have what is called "a 504" written before your nephew starts first grade. A 504 is a legal document that mandates what accomodations and modifications the school district must make to adjust the requirements of school to meet the needs of your nephew. The older your nephew gets, the more important the 504 will become. It is a matter of federal law that the district, school, and teachers comply with it. It can be written to ensure that absences don't count against his grades, that he has the schedule that works for him, that he is excused from "required" courses that he can't physically do, etc.

Your nephew's parents will at first feel overwhelmed with the schedules, and medications, and doctors, etc. of living with c.f., but will adjust almost as quickly as your nephew will. Soon, everything will feel "normal", because after all, "normal" is what you do every day.

Obviously, when we first learned the diagnosis, we were devastated. But the best advice I ever received was from the mother of another kid with c.f., so I will pass it on to you: "Live, REALLY LIVE, the life you have." It's good advice for all of us.

Hi my name is Yvonne I'm only 14 but sweat test r not always right u really need a blood test.