Bailynn

[anonymous]

My daughter had a sweat test done and it has come back borderline. The result was 49. She does not seem to have any other CF symptom. Here are the symptoms that caused us to do the test. She had petechiae (low platelet count) with a diagnosis of Immune Thrombocytopenia Purpura. She has had several infections, ear predominately. The doctor called today and wants to reschedule a second sweat test two months from now. Should I be concerned? Should I wait two months for another test? From what I read the sweat test is fairly consistent so can I expect the results of the next test to be normal?

Just a few questions for someone not knowledgable of CF. If there is any other advice or tips I should know, I would certainly appreciate it.

In advance, I thank you all for your time.

 

[Emily65Roses]

If you're worried about waiting... or getting really thorough accurate results, try getting a blood test instead. They can detect a bunch of the most common mutations by doing a simple blood draw. That tends to be more accurate nowadays.

If you wish to stick with the sweat test... this part is VERY IMPORTANT... go to an accredited CF center for it. I don't care how ingenius your doctor is, if you don't go to a CF center, you are running a high risk of getting incorrect results. Doctors that aren't specialized in CF, as smart as they may be, don't have a clue what they're doing when it comes to CF. They often either do the sweat test wrong, or read the results incorrectly.

So I'd say go for a blood test, if you're worried about it. Or get another sweat test, but if you do, make sure it's a CF center. You can find an accredited CF center near you with this link:
<a target=new class=ftalternatingbarlinklarge href="<a target=new class=ftalternatingbarlinklarge href="http://www.cff.org/chapters_and_care_centers/
">http://www.cff.org/chapters_and_care_centers/
</a>"><a target=new class=ftalternatingbarlinklarge href="http://www.cff.org/chapters_and_care_centers/
">http://www.cff.org/chapters_and_care_centers/
</a></a>

Either way, from what you've said, she's not a child that I'd point at and immediately say "THAT CHILD HAS CF!" Each case is different, so I really can't tell you, but it doesn't sound horrendously like it from here. Does she have trouble gaining weight? Or greasy extra-foul-smelling diapers? (When I say extra foul, I mean *EXTRA* foul. No one's poop smells good, but CFers have a really strong disgusting smell). That would be another clue.

 

[anonymous]

Her poop is not foul smelling at all. She was born premature weighing in at 4 pounds so weight has always been an issue. She is 16 months old and weighs 18 pounds. Eats and drinks constantly.

When I look at the symptoms of CF, I don't get too concerned until I hear about mild cases. I will follow your advice.

 

[Emily65Roses]

Yeah, she doesn't strike me (from what you've said) as a CFer. But, like I said, each case is different. If she does have CF, I would imagine it'd be rather mild, given that she has no digestive or respiratory problems yet.

I was rereading what I wrote... and wanted to say sorry if I came off rude or demanding. It was not intentional. People just generally don't like to listen to that advice (oh my doctor is fine, he knows what he's doing, I don't want to make an appointment at a whole new place, blah blah). But it's very true, and very important. Good luck! <img src="i/expressions/face-icon-small-happy.gif" border="0">

 

[anonymous]

No need to be sorry. I accept all advice from those that know what I don't. I appreciate any help.

I have had some tragedies in my life and there are hundreds of things I wish that I had known when the tragedy first struck. I have now learned when something like this comes up go to the experts. The experts, IMHO, are those that have the disease or have a child that has one.

Again, thank you.