We just learned our friend's baby girl tested positive shortly after birth. Is there any chance she could have had a false positive test - or is it more likely that she has cystic fibrosis? Does anyone know?
2008-10-23T08:16:36Z
She has an appointment at our Children's Hospital (one of the best in the US). She was born 1 week ago.
2008-10-23T08:18:37Z
It's so sad because this is their 1st daughter. They have 2 little boys already. We're the parents of 4 and thankfully, our kids are all healthy. My heart is just breaking for them. Alaina is a beautiful baby - loves to cuddle and is very content.
2008-10-23T08:21:29Z
I just found this:
If your child has a positive newborn screening test or symptoms of cystic fibrosis, your doctor will order a sweat test to see how much salt is in your child's sweat. People with cystic fibrosis have sweat that is much saltier than normal. Most of the time, two abnormal sweat tests will confirm a diagnosis.
2008-10-23T10:40:42Z
Thanks for all the info everyone! I have never known anyone with cf and don't know much about it. My own daughter has recently been diagnosed with IBS, so I've learned a lot going through that. Thankfully, they're taking Alaina to a top notch children's hospital and they did find out early - so everything will be done that can be.
jacksgurl2008-10-23T10:14:11Z
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I just want to say that it is more likely than not the test is correct. However i noticed someone say that children are not diagnosed until they are 6 months and that is incorrect. Those are children who are born in stated without mandatory state newborn screening. My daughter was diagnosed at one week of age due to the newborn screening which is mandatory in my state. So most children now are being diagnosed earlier and i thank god for that because we are able to keep it under control when she was a week old. They only did the blood test not a sweat test because she was too young. But there are many treatments and we are getting alot of support to help us through this. If you would like to help your friend go to the cff.org website they have the best and most recent information out there its the only one we use. Tell them I said good luck with their beautiful little girl.
It could be that she has the genetic for it but not the disease. CF usually isn't diagnosed util kids are 6months or older and symptoms start to show presence. Are the parents carriers? And a Sweat Chloride test can give false positives, so that can't be used as a definate. Most important is 1. are the parents carriers or the gene? If yes, then is the gene present in baby? If yes then that does not necessarily mean that the baby will have CF but it is likely. Time will tell in that case. The sweat chloride tests have proven false positives and sometimes the CF is mild enough that it barely affects the childs life. Time is the best answer after the genetic tests confirm the other answers.
In the U.K. the Guthrie test is used for a number of conditions, one of the tests is for C.F. it's possible but unlikely to be a false positive. I think the Sweat Test (painless to the baby) is still the confirmation for C.F. They can diagnose in as little as 5 weeks. The baby's mum will probably know before then anyway if something isn't right,possible nappy problems, baby's legs often curled up toward the stomach. not gaining weight very quickly. trust the experts they are brill. avoid going to the house with coughs and colds for now. be supportive where possible. One thing's for sure though, it's not the end of the world. Local hospital and Cystic Fibrosis Trust all do a wonderful job.
very unlikely. I'm sry. =/ its a tough diseases. I have a few friends that have it and when i had to stay in the hospital I got to experience first hand what they go through. Hopefully the parents can figure out a way to pay for it and keep the child healthy. people with CF are starting to live a lil longer now.
i did a little research and it is not likely that they miss diagnosed her but there is a great chance with advances in medical treatment that she be ok.