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Posted By : Nateray - 6/21/2011 12:56 PM
Hello,
 
My son was diagnosed with CF when he was 2 years old, as he went into the hospital with pneumonia and had 2 positive sweat test(70 & 72). SO after going to the doctor for this diagnosis of a disease I had never even heard about, and is definately not in my family, we started him on all the meds for CF. He was involved with all of this for one year, and then it came to the doctors attention that something was missing in his blood work for CF, the blood work that someone failed to look at i the beginning fo all of this. So anyhow we were sent to the Childrens Hospital in Toronto where they did some more sweat tests which still came back in the low 40s range, which puts hi at borderline. Here we are 6 years later, after nobody following up with him, and due to my probing, he is now being retested for CF. His last sweat test came back at (40) which is still borderline, but he has had no issues as far as weight or growth, or any other illnesses, he hasnt had any respiratory problems at all. I am just confused by all of this borderline stuff. ANy help or advice????

Posted By : Gemsi - 6/27/2011 3:56 AM
Hi there Nateray.

This all does sound very confusing. Have the doctors not done a genetics test on your son? I would say his 2 positive results of 70and 72 would indicate CF, I've read somewhere that sometimes chloride level can change and lessen as a child gets older. I would say a borderline score of 40 would also indicate CF and they really should be doing a blood test to see if he carries any of the CF genes.

Also doing CF treatment from early on could mean that he's staying well because of them. He could ony have a milder form of CF and you might notice him getting colds more or having problems with his bowels. Have they done a stool fat test (they take a sample of stools and test the amount of fat present in them) They would do this when trying to work out the correct enzyme dose. If he is on enzymes then this could probably indicate CF too.

As far as weight and heaight is concerened, I'm currently being told to lose weight as I'm at 75kg and 5ft4. My brother also with CF is a bit thinner but getting a belly himself now and is 6ft1. We both have the most common mutations. CF can vary so much between people and there is no set box to fit it all into and CF comes with a lot more twists and turns like CF related Liver disease, CF related Diabetes and CF related arthiritus.

Hope it turns out that your son doesn't have CF, but if he does then an early start as good as this should mean he's not had any lung damage upto now and will mean longer before he will start needing IV antibiotic treatment, etc.

All the best
Gem

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