does it sound like cf?

[pepperderr]

DS went a few days without a coughing attack like he usually gets all day long. Today he feels nauseated and cries that he is going to throw up. He is coughing and it sounds like he is coughing stuff up but he says he can't. This is not an uncommon occurance for him but now today he said he wanted water when he was feeling like that and I asked him why and he said so he could breathe. This has been going on all day and just earlier he said I can't breathe and was begging for water again. he said his chest hurts. He is breathing very fast. I called his doc and the nurse said if he is not turning blue then there is probably nothing to it and he is probably just nervous. I wonder why he thinks water helps him breathe? I gave him some allergy meds and he is sound asleep right now but breathing very fast and heavy.

The doc is checking for cf via a sweat test on the 23rd because of his cough attacks all the time and his loose stools that float and his sinus problems and he is so skinny. Do you think his symptoms today could be from CF and should I be more worried or is it just a cold? Every time I take him to the doc and even when I took him to the er last time, they just say oh well and send him home. He has meds for asthma but they don't make the cough go away. Thanks

Rebecca

 

[gsplover]

Does his skin taste salty?

 

[julie]

Definately sounds like some true CF characteristics. Have you ever tried chest Physical therapy on him? Sounds like that might be beneficial to your son, help him looosen up some phlegm and cough it up.

Do you have knowledge of the CF genetic tests available if the sweat test is negative or borderline? I ask because sweat testing is not 100% accurate, even when done correctly. genetic testing also is not 100% conclusive because more mutations are found all of the time, but usually a combination of the two tests will yield the most accurate diagnosis.

Please keep us posted on on the Sweat test results.

 

[JazzysMom]

For me if I am having difficulties coughing something up, I drink water. It might be a combination of the soothing sensation from the water & the need for us to keep hydrated. I, personally, dont find it unusual!

 

[candiebar76]

One thing I was told by Alyssa (see her blog) was make sure you get the numbers of the SWCL test. As for the symtoms follow you instinct. Research what the Dr. is looking into... Know your stuff! webmd and the Cystic Fibrosis Foundation are great places for info...

I don't know a whole lot about the actual disease eccept what I have read. I am just now going through all the testing with my 6 year old. The waiting game is very hard, but don't let the ball drop if you think it is a possibility. Everyone here has been very helpful to me and actually helped me have the confidense to put my foot down with the Dr. to get further testing after the SWCL test came back borderline and he said "ok ruled that out!"

Candace
Sorry I am a terrible speller

 

[julie]

That's interesting melissa-about the water. Mark drinks a lot of it, but I never though that it might also be a soothing sensation for him, although it makes sense.

 

[Alyssa]

Rebecca,

Yes, there are alot of things in your post that sound like CF to me. I'm glad you are getting the sweat test soon, and yes, as Candace already said, if you haven't done so already, you can read the first entry on my blog page about sweat tests. Unless his numbers are clearly in the low normal (like well under 20) <b>I would insist on genetic testing.</b> We see so many people on this website who we know have two genes but their sweat test numbers are in the 30's.

I'm surprised by the casualness of the doctor and nurse about his breathing ~ if he was just getting too worked up or nervous <b>then he wouldn't continue to have rapid breathing while he was sleeping. I really feel that particular episode needs to be addressed right away if he is not better by tomorrow morning.</b>

 

[anonymous]

water tends to be very soothing for me. i am never without it and the few times i am i find myself to be worried. It tends to stop my cough or make it more manageable. when i am having coughing attacks just breathing into a cup of water without swallowing makes me a little better.

As for everything else, i agree with the genetic testing. That is the only way you will know for sure

Sue 24w/CF