to test or not to test?

[Starfall99]

A friend of mine recently asked me for info on CF because she noticed her baby tasted salty. She said he seems pefectly healthy, and though he has frequent bowel movements and goes through an abnormal amount of diapers a day he has no problem gaining weight and is even kinda chubby. This is her second child so she has some basis of comparison.

I told her she should probaby look into getting him tested, because it's possible for a child with CF to have few or no symptoms, and the salty sweat is the classic CF symptom. I figured better safe than sorry!

She agreed with me, then afterwards spoke to some other friends who are in the medical field -- I think one was a pediatrician and another was a nurse. They both told her she was overeacting and shouldn't jump to conclusions; one of them said she sounded like the medical students who start diagnosing themselves with everything they learn about.

She didn't really see the sense in what they were saying, so we agreed she should get in contact with someone at a CF center to discuss her concerns and follow their recommendations.

SO what I'm wondering is, was I being too hasty in pushing her to get her child tested? Or was this just another example of medical people being stupid when it comes to CF? What do you think??

 

[anonymous]

I would err on the side of caution, so in that respect I don't think you were out of line. Sometimes medical folks put everything inside a box and if someone doesn't experience everything in this box, then there's no way they could have a particular condition.
If I were this parent, I would rather know right off the bat if my child had CF or not--then there's no wondering and worrying about it for months or years to come.

 

[anonymous]

When I was born, I failed to thrive and was diagnosed at 6 weeks, but only after my parents hounded my pediatrician for a test - and CF even runs in our family. My doc had lost a child to CF and was actually more in denial about me than my own parents. I'd encourage them to have the child tested - the parents can demand the test whether or not the docs think it a good idea - and hopefully for them they are overreacting!
wanderlost - 28 W/CF

 

[JazzysMom]

Better to err on the side of caution. Wouldnt you feel awful if the child does have CF, but wasnt diagnosed for years & damage was done that couldnt have been prevented or at least limited. Considering the number of dx that have no family history or are confused with different problems like Asthma........how do the doctors know for sure unless they test? I had a friend whose son was tested to rule it out. We didnt think he had it, but to be sure they tested. No big deal. Test to rule it out if nothing else!

 

[NoDayButToday]

I would test. It's not as if the testing itself is a risky procedure, and saltiness has been an indicator of CF before we even knew what CF was-- several cultures had sayings that were along the lines of "If your baby tastes salty, he will not live long" . Better to be cautious and wrong than lax and correct.

 

[julie]

Test test test test test! I agree with what everyone else said, what if the child does have CF and she didn't test and then they were diagnosed later in life..... what kind of treatments and preventions might have been wasted! And if the child doesn't have CF, then it's one less thing to worry about.

It always amazes me how ignorant those who are actually IN THE MEDICAL FIELD are! It's times like this that I am reminded of how often I have had to educate my husbands doctor on new CF treatments, tests, IVF procedures.....

Have her jump on this site and see these posts if it would make her feel more secure. A pediatircian isn't God and surely isn't a mind reader, many children have been misdiagnosed-many by educated pediatricians who told the parents they were "overreacting". If it were the pediatricians child, do you think he/she woudl hesitate in getting them tested? I don't think so.

 

[Emily65Roses]

It's not going to hurt anything to test. Just do it to be sure.

 

[WinAce]

HELL YES, test the kid as soon as possible. It doesn't even involve any bloodletting. Minor discomfort, sure, but the damage that could be done to the kid's lungs if he <i>does</i> have it will always haunt you, if you don't rule out CF right now.

Salty kids were believed to be the result of a witch's curse in medieval Europe, a curse that would make them die young (i.e., CF). It's the #1 spontaneously suggestive symptom.

 

[anonymous]

Yes test. I was diagnosed as an adult. It is better to be safe.

 

[anonymous]

Absol. test. This is exactly why my son wasn't dx until 15 months. Same thing. Chubby, pooped 11 times a day and no problem with weight gain. He got very, very sick with a lung infection and that was the only way he event. got dx'd. Jo Ann