help! is anyone out there

A

anonymous

New member
please help !!! my son has had a cough for the last three weeks. he had a sweat chloride test done today and the results came back as a 59. i can only find information that says this means high borderline, what does this mean exactly? he has not had a continuous cough or gi problems. when he was a new born he had aspiration mucnium and had to spend his first night in an oxygen hoody. he was also taking zantac until he was about 6 months old because we were told that he had reflux. i took him into the doctor a lot his first month because he spit up everytime he ate and had a terrible cough. after he was off the zantac he hasn't had any problems except for the ususal daycare runny nose, until lately. his first birthday in on february 3. i have an appointment at his doctor's office tomarrow because they think that he might have pnemonia and needs a chest x-ray. he started a nebulizer treatment on last thursday and it seems to have helped with his cough and wheezing. tell me anything you can about having a test that reads 59. i am going crazy.

Breanna Caras
 
M

Mockingbird

New member
Anything above 60 is positive for CF. Below 40 is normal, and anything in between is borderline, meaning the test was inconclusive. I am sorry you have to go through the whole process again, I am sure just waiting for the results of the first one would be horrible enough for anyone.

I hope this works, here is a link to a pdf on sweat testing from the cystic fibrosis foundation. <a target=new class=ftalternatingbarlinklarge href="http://www.cff.org/UploadedFiles/publications/files/SweatTestFactSheetLH.pdf">www.cff.org/UploadedFiles/publications/files/SweatTestFactSheetLH.pdf</a> You may have to right-click on it and save it to your computer... I'm not all that great with this stuff.

I know you are not alone; there are many parents on here who have been caught waiting for the same test. My heart goes out to you and I will hope for the best.
 
J

julie

New member
Breanna, in order to be seen as online, you must sign up for a user name and utilize it every time you come onto the site.

There has beena huge flood of questions very similar to yours, about sweat tests, coughs and such. Just to give you some information to read about tonight, butcause I am sure you want answers now and that is understandable, I am going to copy and link some similar recent discussions.

1. <a target=new class=ftalternatingbarlinklarge href="http://forums.cysticfibrosis.com/messageview.cfm?catid=6&threadid=5258&FTVAR_MSGDBTABLE=">http://forums.cysticfibrosis.com/messageview.cfm?catid=6&threadid=5258&FTVAR_MSGDBTABLE=</a>

2. <a target=new class=ftalternatingbarlinklarge href="http://forums.cysticfibrosis.com/messageview.cfm?catid=6&threadid=5247&FTVAR_MSGDBTABLE=">http://forums.cysticfibrosis.com/messageview.cfm?catid=6&threadid=5247&FTVAR_MSGDBTABLE=</a>

3. <a target=new class=ftalternatingbarlinklarge href="http://forums.cysticfibrosis.com/messageview.cfm?catid=5&threadid=5251&FTVAR_MSGDBTABLE=">http://forums.cysticfibrosis.com/messageview.cfm?catid=5&threadid=5251&FTVAR_MSGDBTABLE=</a>

4. <a target=new class=ftalternatingbarlinklarge href="http://forums.cysticfibrosis.com/messageview.cfm?catid=6&threadid=5210&FTVAR_MSGDBTABLE=">http://forums.cysticfibrosis.com/messageview.cfm?catid=6&threadid=5210&FTVAR_MSGDBTABLE=</a>

5. <a target=new class=ftalternatingbarlinklarge href="http://forums.cysticfibrosis.com/messageview.cfm?catid=6&threadid=5207&FTVAR_MSGDBTABLE=">http://forums.cysticfibrosis.com/messageview.cfm?catid=6&threadid=5207&FTVAR_MSGDBTABLE=</a>

6. <a target=new class=ftalternatingbarlinklarge href="http://forums.cysticfibrosis.com/messageview.cfm?catid=6&threadid=5072&FTVAR_MSGDBTABLE=">http://forums.cysticfibrosis.com/messageview.cfm?catid=6&threadid=5072&FTVAR_MSGDBTABLE=</a>

I hope this gets you started, you can search at the top if this doesn't give you some information you need.

Sweat tests can be inconclusive, as can blood tests because there are over 1000 known mutations (variations of the name/type of CF "mutation"). Many laboratories only test for 25-89 of the most common. With a borderline sweat test I would recommend an extensive blood test through Quest diagnositcs (<a target=new class=ftalternatingbarlinklarge href="http://www.questdiagnostics.com/hcp/topics/cf/cf.html">http://www.questdiagnostics.com/hcp/topics/cf/cf.html</a>

Sounds like he has some digestive issues, slight but some. He's got a cough, possible pneumonia... all these are somewhat classic CF symptoms. combined with a borderline sweat test points to likely CF. I don't want to scare you, but also don't want you to be in denial... I would HIGHLY recommend a blood test.

also, where did you get the sweat test done at (name of clinic/hospial and location)? It is very important that you have it done at an accredited CF clinic.

Hope this helps a bit, ask more questions as you need to...
 
A

Alyssa

New member
Breanna,

I posted on the other thread... I now see you did start a new message -- great! Here is my post again.

To answer your question about the sweat test at 59 -- it is on the low side, but it is (as far as I know) a positive result. I have been told that borderline is 40... well I take that back, yes.... 40 to 60 is borderline but given his other symptoms with a 59 I would think he could be diagnosed with CF -- your docs might want to do further testing for sure. A blood test (genetic) testing would be good, but some people find they still end up with inconclusive results because it might only find one identified gene, not the needed two genes. But that can be found out later for now it sounds like he is starting to get the treatment that he needs -- what is the nebulized treatment you mentioned? Many people with CF use albuteral (to help open the airways), pulmozyme (to thin the mucus in the lungs so it is easier to cough up) and tobramycin (tobi) which is an inhaled antibiotic.

Keep learning what you can and push for the genetic testing to be done. I hope your son feels better soon.

Oh, and by the way, my kids sweat tests numbers are 38 & 41. They both had genetic testing done and we found they both have DeltaF508 & R117H gene mutations -- positive for CF. The low sweat test numbers just indicates that the body is doing a pretty good job of doing whatever it does with the chloride.

Below is some information I copied from a website about sweat tests.

~~~~~
Sodium and chloride are part of your body?s electrolyte balance. They help regulate the fluid balance in your blood and tissues. Normally, chloride travels in and out of the body?s cells, helping to maintain electrical neutrality and water balance. Chloride?s level usually mirrors that of sodium.

When a patient has cystic fibrosis (CF), they have inherited a mutated (abnormal) pair of genes on chromosome number 7. These genes normally produce a protein (cystic fibrosis transmembrane conductance regulator (CFTR)) that serves as a channel, letting chloride out of cells and into the surrounding fluid. When a mutation is present, the CFTR protein may not work properly or be totally absent. Since CFTR levels are usually highest in the cells lining the internal surfaces of the pancreas, sweat glands, salivary glands, intestine, and reproductive organs, these are the areas most affected by CF.

~~~~~
 
A

anonymous

New member
THANK YOU EVERYONE FOR ALL THE GREAT INFORMATION.

we went to the doctor today so sammy could get chest x-rays. they showed some "streaking", we got a repeat rsv test and it came back as positive this time. he did however lose a nother ounce over the weekend. our doctor doesn't want to do the blood test until we hear back from denver with the results. he said it takes two days for that to come back and with yesterday being a holiday we probably won't hear anything until friday.

he is on an albuterol nebulizer.

i just want to say that this site is the best that i have found, everyone is very helpful to everyone else and seem to care about eachother. and helping others out.

we'll keep you updated

breanna
 
A

anonymous

New member
we had his sweat test done at the hospital here in town that deals with all the pediatrics. and they are sending the test to denver because it was between the 50-60.

breanna
 
J

julie

New member
Well keep us posted and take care of yourself too. If you have more questions, you know where to come with them!!!
 
A

anonymous

New member
KEEP YOUR HEAD UP, I JUST WANT TO ASK IF YOU AND YOUR HUSBAND ARE CARRIERS OF CF? THE ONLY WAY YOUR SON COULD EVEN HAVE A SHOT OF HAVING IT IS IF YOU BOTH ARE CARRIERS...I HAVE CF AND OF COARSE A CARRIER, BUT MY HUSBAND IS NOT A CARRIER SO MY SON COULDNT POSSIBLE HAVE CF.. I WOULD GET BLOODWRK OF YOU AND YOUR HUSBAND , THEN REPEAT THE SWEAT TEST HOPE ALL IS WELL, MY PRAYERS ARE WITH ALL OF YOU JENN 29 W/ CF
 
I

imondeck

New member
Sodium and chloride are part of your body?s electrolyte balance. They help regulate the fluid balance in your blood and tissues. Normally, chloride travels in and out of the body?s cells, helping to maintain electrical neutrality and water balance. Chloride?s level usually mirrors that of sodium.


My question is with the above statement/info.

Does anyone have their/child's sweat test results with the chloride level and sodium levels? I am a little confused on the statement about chloride and sodium mirroring levels?

We too are not given a definate diagnosis. I have asked my son's pulmo straight out with all the info. he has on my son if he thought he had cf - his reply was yes, in his opinion he does have it. Although he did mention the possibility of a disease called Young's syndrome. I can't find much information on it though. Any thoughts?
 
A

anonymous

New member
this is a web site that i found on youngs syndrome. i did also find it as barry-perkins-young syndrome

<a target=new class=ftalternatingbarlinklarge href="http://www.ncbi.nlm.nih.gov/entrez/dispomim.cgi?id=279000
">http://www.ncbi.nlm.nih.gov/entrez/dispomim.cgi?id=279000
</a>
i hope that this has some info on it.

i wish you and your family luck and that all goes well.
 
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