I have been looking for some specific information and hope someone here can help. My 20-month old just went through a sweat test after 6 weeks of diarrhea, losing weight, and all the stool cultures negative. He's had a runny nose constantly since he was born. Used to get terrible ear infections until July when tubes were put in. He was also allergy tested and put on prescription antihistamines.

The issues and questions:

The first sweat test did not yield enough sweat. I was given the choice to either do another test or reschedule for a different day. Since I had to travel about 75 miles one way, I opted to redo.

I had him so totally bundled the second time (all you could was his face) and expected a lot of sweat. That test resulted in LESS sweat. They called my PCP's office for instructions and were told to do the test on one of the samples. These were performed by two different techs using different inducers, same type. My little one even had sweat coming off his arm after the induction with pilocarpine. They told me he just is not a sweating child.

Can they possibly get an accurate result from a sample that is considered QNS? What might be a next step? Chances are things are fine, but we'll deal with whatever comes our way.

Thank you!

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Elaine

I imagine if they're really serious that they think he has it they'd do a blood test.

There's a very definitive, very accurate, blood screening test for the defective CF gene.

But I can't imagine it's cheap.

Thanks Wrin,

It was something the techs mentioned to me, but I don't know if our insurance company will pay for it. I guess the wait for the call from the doctor is going to be the hardest part of this.

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Elaine

The waiting is the hardest part. When my son was 6 weeks old they tested him. It took a couple of days for the doctors to get back with me. At that time I knew nothing about CF, so I did research. His results came back positive. He is now a health active 13 year old that drive me crazy every day.

The doctor's office told me that the sweat test came back negative. I guess that's good, but I still have some doubt since there was some question about the size of the sample. The other stuff is not better, so I guess we'll be on to see a peds gastroenterologist next. http://www.healthboards.com/ubb/frown.gif

Thank you!


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Elaine

yes, that sounds like a good idea -- sweat tests are more an excellent guideline and yet are not exactly definitive -- especially with smaller samples.

I've heard of the levels varying from day to day, and kids who had CF being diagnosed after a blood test. So I don't know what to tell you, except perhaps to apply at your insurance company to have the blood test done. See if they'll cover some of it. I imagine if you had a doctor's letter of recommendeation that might make them think harder about it, (though I imagine you might have to pay the doctor for his time too.. http://www.healthboards.com/ubb/rolleyes.gif but at any rate, you don't lose anything by applying for coverage, and seeing how much the test would actually cost.

Thanks Wrin.

This one is still up in the air for us. I wish we could get some definitive answer. He always seems sick.

Elaine

Kind of sucks, yeah... if only there was some definitive test for *everything*... preferably a painless one.

Have they done abdominal ultrasounds for blockages, and done other tests for things like ulcers? Is it possible he has irritable bowel syndrome? Lots of kids have constantly runny noses -- especially kids predisposed to airborne allergies. And some kids just seem more prone to ear infections. Pull out all the stops -- if there's a test for GI problems that's relatively painless, (like an ultrasound,) see about having it done.

Elaine,
I was just reading your posts and they sound alot like things that happend to my children. My oldest daughter had the same kind of problems as you have decribed your child having. From the time she was born (she is 10 now) she had awful diarrhea. She would have at least 10 or more dirty diapers a day. She was constantly sick (runny nose,coughing,throwing up and fever) She stopped breathing in the middle of the night because she had a massive build up of flem in her throat. (when we got this stuff out of her throat it looked like mesh lining from a windbraker) I was thinking that she had gotten into something and put it in her mouth and that she was choking. But, after we got it and she seemed to be ok. We put her in her carseat to take her to the hospital and it happend again. When we got to the hospital the doctor (ER DOC) told me that she (my daughter) had to cough this stuff out that it was just mucus caused from a cold. Anyhow, she spent alot of time in the hospital over the next 5 years and they were telling us that she just had asthma. In 1999 we moved to another city and started seeing a new Doctor. He got her File from the hospital and Doctor in the other town. He was shocked to find that in 1993 when our daughter was 5 months old and in the hospital that a Sweat Test had been done and was positive. We knew nothing about this (we were young) I know thats no excuse but thats all I have. They never told us anything. They just kept telling us that she had Asthma. Anyhow, our new doctor had another Sweat Test done that very day. It was inconclusive.So, we did it again. 4 more times it was inconclusive. Then we got a positive test and then a negitave one. So, I was told by the pulmonoligist SP? here in our town that once a positive test always a positive test. Anyhow, she is doing well after all of this. She has finally hit a growth spert. She is 5 foot tall and 100 lbs. *10 years old* She hasn't spent a day in the hospital in over 4 years. I believe that is due to our climate in Alaska. We live in Anchorage right on the water. So, the cold,dry & windy in the winter and warm,wet and windy in the summer has really helped her. We know of several other CFers in Anchorage doing very well like our child.

This is alot longer than I intended it to be... LOL... I will tell you about my youngest child next time... My fingers are tired now... LOL...

AlaskaChickie

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Thanks for sharing about your daughter. I wish we could get a definitive answer. My older children have asthma. My daughter had the sweat test done, but they told me it was negative. I've been told it can take awhile to find out for sure.

The diarrhea comes and goes. We just had a heck of two weeks here. My little one got the stomach flu that has been going around. Then he kept throwing up and had diarrhea for over a week. The x-ray ten days ago showed that his lungs had gotten stuck together (had collapsed and gotten stuck together). That seems to be better now, but no one can tell me why. I was told it MIGHT be the viral pneumonia he had. I again raised the issue of CF.

I don't want him to have it, but I do want to know one way or the other. Maybe they will try repeating the sweat test.

Elaine



[This message has been edited by mm9221 (edited 01-20-2003).]

Hi Elaine,
I just reread your entry from January. I was wondering if you ever found about your son? Did he have cf? Did they do more testing? The reason I ask is because we are in the same predicament. My son had 2 sweat tests both of which were borderline. His genetics test was negative. However, his genetic test only tested for 100 mutations,but there are over 600 cf mutations found. How can anyone conclude he doesn't have cf if you haven't tested for all the possible mutations? Isn't that in conclusive?
Well, I think it is and have been playing phone tag with his doctor. The problem is my son has had gi symptoms since his first month of life.And they still continue inother words, he has a lot of symptoms and I think he requires one more test. But which one? The nasal test would probably be next from what I've read but I think it's invasive. But the worst scenario would be for us to go on a few more years, and then we finbd out he has it and he's lost two years of treatment.Thus, I can identify with you so please let me know about your son and what you did, doctors, tests, etc. I look forward to hearing from you.
Susan