hello my 8yr old had a sweat test done and it came back positive for cf. we havet o go to childrens hospital to the cf clinic to have the test done again to make sure. just wondering if there is anything i should be asking before i go to there with her. i am freaking as i just lost my niece 4 months ago to cf.
positive sweat test
- Thread starter pugsley76
- Start date
Hello,
You can ask what the numbers were on the sweat test. I am not 100% on this but if I remember anything below 40 is normal...40-60 is possible CF ( borderline)and anything higher than 60 is CF. So if your child is borderline you can req a blood test that checks if your child has 2 CF mutations. That would confirm 100% that he has CF. But be aware that the basic genetic test only checks for the most popular mutations...usually between 25-100 and there is actually over 1000!!! Ambry Genetics ( see their web site) looks at the actually gene and usually can find a mutation if there is one even if it has not been discovered yet. Itis pricey...a few yrs ago it was about 500$ US dollars...
Good Luck
God Bless
You can ask what the numbers were on the sweat test. I am not 100% on this but if I remember anything below 40 is normal...40-60 is possible CF ( borderline)and anything higher than 60 is CF. So if your child is borderline you can req a blood test that checks if your child has 2 CF mutations. That would confirm 100% that he has CF. But be aware that the basic genetic test only checks for the most popular mutations...usually between 25-100 and there is actually over 1000!!! Ambry Genetics ( see their web site) looks at the actually gene and usually can find a mutation if there is one even if it has not been discovered yet. Itis pricey...a few yrs ago it was about 500$ US dollars...
Good Luck
God Bless
I'm so sorry to hear of your daughter's diagnosis. Her case must be mild though, since you haven't discovered it until now, and that is good. I am 31 weeks pregnant and my unborn son was diagnosed with CF, I hope his case is mild...I worry all the time. If you don't mind me asking, how old was your niece?
I have a ton of questions but no one to ask them to. I keep asking for a referral to a specialist but my "military" doctor doesn't think it is neccessary. It makes me want to cry, I'm so emotional right now it really doesn't take much to make me want to cry. I am so afraid my son will be extremely ill, it scares me so much, it consumes me at times. I just want to know the severity of it, but then I'm afraid for the day to come when he will be born. I feel like I can keep him safe as long as he is with me. All I have is this diagnosis right now and nothing else. Everytime I try to think of my baby I am then sadden by the fact his life will be filled with hospital visits, medications and the desire to be well, which will probably never be a reality. I should be more optamistic, some days are harder than others for me.
Jen
I have a ton of questions but no one to ask them to. I keep asking for a referral to a specialist but my "military" doctor doesn't think it is neccessary. It makes me want to cry, I'm so emotional right now it really doesn't take much to make me want to cry. I am so afraid my son will be extremely ill, it scares me so much, it consumes me at times. I just want to know the severity of it, but then I'm afraid for the day to come when he will be born. I feel like I can keep him safe as long as he is with me. All I have is this diagnosis right now and nothing else. Everytime I try to think of my baby I am then sadden by the fact his life will be filled with hospital visits, medications and the desire to be well, which will probably never be a reality. I should be more optamistic, some days are harder than others for me.
Jen
Jen,
What branch of service are you all with? I know for a fact when your child is born that you will be able to visit with an accredited CF Center and Tricare will pick-up the bill. If you have any questions you can e-mail me, or my wife at curecf@adelphia.net for any help or advice. I am in the AF (stationed at the Pentagon) and our daughter was diagnosed almost 2-years ago. She is now 3 and gets excellent treatment from the Johns Hopkins Medical Center in Baltimore. The most important thing is you stay healthy and stay positive...it will be ok
Sean
What branch of service are you all with? I know for a fact when your child is born that you will be able to visit with an accredited CF Center and Tricare will pick-up the bill. If you have any questions you can e-mail me, or my wife at curecf@adelphia.net for any help or advice. I am in the AF (stationed at the Pentagon) and our daughter was diagnosed almost 2-years ago. She is now 3 and gets excellent treatment from the Johns Hopkins Medical Center in Baltimore. The most important thing is you stay healthy and stay positive...it will be ok
Sean
thefrogprincess
New member
My dad was in the military when my brother and I were diagnosed and had no problems getting us to CF specialists, so good luck with that.
I would suggest getting the genetic testing done regardless of how the sweat test results come out just because false positives can happen. But deffinatley go through Ambry. If the CF clinic is on top of things this should not be an issue for you. Good luck, and let us know how it works out.
I would suggest getting the genetic testing done regardless of how the sweat test results come out just because false positives can happen. But deffinatley go through Ambry. If the CF clinic is on top of things this should not be an issue for you. Good luck, and let us know how it works out.
NoDayButToday
New member
I don't think sweat tests can have false positives, but false negatives are definitely possinble, so I would take thefrogprincess's advice and also get a genetic screening. Good luck!
Jen, I too am in the military and have a spouse with CF. You have every right to have your child see a CF accredited doctor. My husband has a doctor here at the MTF that is a pulmonologist who just started taking CF patients, Mark is his first. BUT, we have requested on a few occasions to get a 2nd opinion from a CF accredited center here in San Diego, and the doc has referred us, for a "second opinion". If your doctor refuses to "disengage" you to an ACCREDITED CF center, ask to talk to the Pulmonary (if that is the type of doc you are to see now) Department head. Also, some major military hospitals have Tricare Service Centers on base-if you have one near you GO IN and visit, it is MUCH more productive than calling on the phone.
Julie
Julie