New Here, some questions! Please help

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New Member

Date Joined Oct 2009
Total Posts : 1
   Posted 10/7/2009 9:45 AM (GMT -7)   
Hi, my name is Lacey.  My son is 4 1/2 years old.  He was born 6 weeks early and suffered from RSV when he was 6 months old. Ever since then he has had to have nebulizer treatments.  When he was 3 years old, his pediatrician, finally sent us to an Asthma and Allergy specialist.  She has been treating him ever since, with an asthma diagnosis.  He takes 3 preventative asthma medications daily, but still seems to get sick a lot.  And when he does get sick, he's really sick..Never just a simple cold or cough.  It always turns into pnuemonia.  Yesterday I took him into see her because he was having a hard time breathing. His pulse ox was at 86 when we arrived.  However, he wasn't wheezing at all. It was strictly because he had so much mucus built up that he couldn't take in oxygen.  She has sent us home with antibiotics and we are doing the nebulizer with albuteral every 2 hours.  His dr. said she wants to preform a sweat test on him after his antibiotics are up. 
From what I've read, most people are diagnosed with CF at birth or within 2 years.  Is it very common for a 4 year old to be diagnosed?  My husband keeps telling me not to worry, because we have no family history of CF.  I think he's just doing his 'husband' job and trying to ease my worries. 
My son complains of stomach pain on a daily basis, and hardly eats much. Although his weight isn't really suffering. He's never been a weight concern.
Will the sweat test be painful for him?  How long will it take to get results?
Any information would be great. If you are a parent of a child that was diagnosed later in childhood, please give me input.

New Member

Date Joined Nov 2009
Total Posts : 18
   Posted 11/6/2009 5:55 PM (GMT -7)   
I was diagnosed at 18. Soo I would get a test done. I also have no family history of CF.

The sweat test is a little uncomfortable, but it only takes an hour or so. I can't say I had any pain. Your son will probably be in hysterics because he is a 4.5 year old boy. It's what I would have done.

I have heard that a later dianosis can sometimes point to the mutation at fault. There is the normal d508x2 (well, most common) which has all the symptoms you hear with CF, but there are also many many many other variations on the disease. I am one of only 200 or so people in the world with my genotypical mutation, just to show how many variations could be out there.

You're the mom. If you think something is up, something is usually up. Dad's can't pick up on those things. If I were you, I would suggest getting a sweat test or at least an allergist/pulmonologist for a professional opinion on whether a sweat test should be conducted. And don't let them tell you CF isn't diagnosed after 2 years of age. In fact, if they do, be sure to tear up whatever proof of their med schooling might be hanging up in their office, and don't be hesitant on spreading your professional opinion of him/her. It will only help others.
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