Sweat Test 55 / 62 - Is it CF?

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tmlindsey
Regular Member


Date Joined Sep 2005
Total Posts : 78
   Posted 2/9/2009 8:14 PM (GMT -7)   
My 17 yr old son has had two sweat tests in the past week.  The first came back at 55 and the second came back at 62.  The dr. has done the blood test, but said it  could take up to 2 months to come back.  He also says that he doesn't feel that it is CF  since the chest xrays of the lungs look perfect and  my son doesn't have a lot of infections.  Can anyone give me any feedback?
 
Thanks  

Gemsi
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Date Joined Feb 2007
Total Posts : 1050
   Posted 2/10/2009 12:18 AM (GMT -7)   
As far as I am aware,

55 is a borderline result, 62 is a definate positive result.

Lung xrays in CF show nothing in early stages. Up until age 16 I had a 113% lung function, and totally clear looking lungs on an xray. One a+e doc actually asked if it was a definate I had CF, as my lungs sounded clear.

Even now, at 22, colonised with infection-needing IV's every 3 months, I still have a high lung function-lowest it's been last year and this year so far is 74%, but it's normally at the 90% mark.
I suffer badley with my chest, any little knock like a cold or something, sends it hurtling back down to needing IV's. But a regular A+E doc would still say my chest sounds really clear.

What kind of doc are you seeing? Just a regular doc, or a consultant? You might have to try another doc for a second opinion. Or, just wait for the blood tests to come back.

Hope all is well, and your son doesn't have CF. But a sweat result of 60 is a high level, and jumps away from being just a maybe/borderline result. If it turns out your son does have CF, get him to a good doc!

Good luck
Gem
Moderator of the Cystic Fibrosis Forums
Diagnosed with: Cystic Fibrosis, Asthma, ABPA, Clinical Depression, Mild Liver Cirrohsis, Mild Osteopenia, Erythema Nodosum. Waiting for final diagnosis on Muscular Dystrophy type symptoms.
Medication: Creon 10,000, Flucloxacillin, Vitamins A,D+E, Serevent, Salbutamol, Paracetamol, Ondansetron, Nefopam, Ursodeoxycholic Acid, Saline neb/PEP system, Mirtazapine, Slow-Sodium, Azithromycin, Cirpofloxacin, Septrin, Omeprazole, Tobi Ineb and Fresubin.
Had a Port-a-cath fitted on chest wall since Nov 05
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Sometimes, I feel that I should go and play with the thunder - then I get scared and run away.


tmlindsey
Regular Member


Date Joined Sep 2005
Total Posts : 78
   Posted 2/10/2009 8:40 AM (GMT -7)   
He is seeing a Pulmonary specialist at St. Louis Children's Hospital. They don't seem to think it is CF. At least that is what they keep telling me. Since he doesn't normally have respitory problems. His sweat tests were 55 / 62. Also, his blood oxygen level is irratic. Last Monday it was 91% - Friday it was 73% and yesterday it was 98.4%. He does get winded easy during sports or running. I'm about to lose my mind.

tmlindsey
Regular Member


Date Joined Sep 2005
Total Posts : 78
   Posted 2/10/2009 9:00 AM (GMT -7)   
My son's other symptoms include clubbed fingers and toes and headaches. The doctors in St Louis said the sweat test range was:
<40 was negative
>80 was positive
41-79 was borderline

Everything I ready on the net says 60 and over. I'm confused.

Gemsi
Forum Moderator


Date Joined Feb 2007
Total Posts : 1050
   Posted 2/10/2009 12:02 PM (GMT -7)   
Everywhere online including on the CF Foundation website (the masters of CF) says:
<40 is definately no CF
40-60 is a borderline/grey area
>60 is positive.

I really do think you need a second opinion.

Clubbed fingers is a sign of infection-a lot of infections in a CF patient don't show up that well on xray or as symptoms all the time, but they do cause clubbing. Headaches could be low O2, high CO2 or something completely unrelated.

As for looking and sounding well, I have a friend with CF. She was on the lung transplant list-she was a year over how long doctors had expected her to live. Her family had just been given the 'she's not making it through this' like 3 months before. She managed to get up on TV, smile, and look rather normal, considering she was hooked upto an oxygen tank. She then carried on for another few months-had a double lung transplat, and a month later was caught running down a beach, oxygen free, and looking more normal than ever.

Looking young and looking normal, seem to be traits to CF patients. Though that's obviously not an absolute thing. It's usually why I have such a confusion over cross-infection, because how am I meant to stay away from other CF patients, when they just look the same as any 'normal' person.

I'm not trying to scare you into thinking your son has CF. However I think it is best for you to push until there are some absolutely definate results. People with CF on average, do a lot better the younger they're diagnosed. If your son doesn't have CF, then you can move on to looking for a different diagnosis.

Gem
Moderator of the Cystic Fibrosis Forums
Diagnosed with: Cystic Fibrosis, Asthma, ABPA, Clinical Depression, Mild Liver Cirrohsis, Mild Osteopenia, Erythema Nodosum. Waiting for final diagnosis on Muscular Dystrophy type symptoms.
Medication: Creon 10,000, Flucloxacillin, Vitamins A,D+E, Serevent, Salbutamol, Paracetamol, Ondansetron, Nefopam, Ursodeoxycholic Acid, Saline neb/PEP system, Mirtazapine, Slow-Sodium, Azithromycin, Cirpofloxacin, Septrin, Omeprazole, Tobi Ineb and Fresubin.
Had a Port-a-cath fitted on chest wall since Nov 05
Help support the forums so we can support you:  http://www.healingwell.com/donate
Sometimes, I feel that I should go and play with the thunder - then I get scared and run away.


Gemsi
Forum Moderator


Date Joined Feb 2007
Total Posts : 1050
   Posted 2/22/2009 3:22 AM (GMT -7)   
Lindsey, how much longer do you have to wait on the genetic testing. Feels like you've been waiting ages!

Gem
Moderator of the Cystic Fibrosis Forums
Diagnosed with: Cystic Fibrosis, Asthma, ABPA, Clinical Depression, Mild Liver Cirrohsis, Mild Osteopenia, Erythema Nodosum. Waiting for final diagnosis on Muscular Dystrophy type symptoms.
Medication: Creon 10,000, Vitamins A,D+E, Serevent, Salbutamol, Paracetamol, Ondansetron, Nefopam, Ursodeoxycholic Acid,  Lofepramine, Slow-Sodium, Azithromycin, Ciprofloxacin, Omeprazole, Tobi Ineb, Fresubin Liquid Feed, Skandishakes. I use PEP device as my physio.
Had a Port-a-cath fitted on chest wall since Nov 05
Help support the forums so we can support you:  http://www.healingwell.com/donate
Sometimes, I feel that I should go and play with the thunder - then I get scared and run away.


tmlindsey
Regular Member


Date Joined Sep 2005
Total Posts : 78
   Posted 2/23/2009 2:54 PM (GMT -7)   
I feel like it has been forever, but it has only been 2 weeks and 3 days. I'm trying to wait patiently, but it is driving me crazy. The upside to this is he really doesn't get respitory infections. The only thing that I really see with his breathing is if he exerts much energy he gets winded easy. However the PFT test are all ok.

momto3
Veteran Member


Date Joined Nov 2006
Total Posts : 1331
   Posted 2/24/2009 2:07 PM (GMT -7)   

Hi there, so sorry to hear about your son and I know the worry!

My oldest son when he was 9, had a sweat chloride test and the first one came out at 40ish and the second one came out at 60, and when tested for the type of mutation he was carrying (takes so long!) they only tested him for the first 1,000 mutations and he had two mutations not matching, and the Doctor at childrens diagnosed him as a carrier with symptoms.  He does have lung issues and it also affects his GI tract terribly, not to mention he is now 16 and weighs 80lbs.  My daughter was also tested and her sweat chloride was at 80 both times, and she is now 12 and while she only weighs 60lbs, her lung capacity is good and she participates in cheerleading.

 

Best wishes to you and I hope and pray that your son will be okay.

 

 


tmlindsey
Regular Member


Date Joined Sep 2005
Total Posts : 78
   Posted 3/5/2009 2:10 PM (GMT -7)   
How long did it take for you all to get your genetic testing back?  I called the dr today and it isn't back yet.  However it has only been 3 weeks. 

momto3
Veteran Member


Date Joined Nov 2006
Total Posts : 1331
   Posted 3/9/2009 12:09 PM (GMT -7)   
If I remember correctly it was at least 3 to 4 weeks, I know it is an agonizing wait.

tmlindsey
Regular Member


Date Joined Sep 2005
Total Posts : 78
   Posted 3/19/2009 8:00 PM (GMT -7)   
Finally, the doctor called today.  He said that my son has one mutation.  It is on PS1235R, which is suppose to be rare.  The doctor also said that my son has two genes out of sequence, but they are producing protein fine.  Therefore there was no problem with them.  He said that my son doesn't have CF, but is a carrier.  Does this all sound correct?

Gemsi
Forum Moderator


Date Joined Feb 2007
Total Posts : 1050
   Posted 3/20/2009 1:48 AM (GMT -7)   
Yes it does.

I'm happy for you Lindsey, thankyou for coming back and sharing for you. Everytime I've come to healingwell I've been checking to see whether your results were back yet. I'm so glad you have something. I've not heard of PS123R, but I'm not very up on what the different mutations actually are.

I'm happy for you that your son is only a carrier. That must be a great weight lifted for you.

I hope you all remain healthy too!!!
Moderator of the Cystic Fibrosis Forums
Diagnosed with: Cystic Fibrosis, Asthma, ABPA, Clinical Depression, Mild Liver Cirrohsis, Mild Osteopenia, Erythema Nodosum. Waiting for final diagnosis on Muscular Dystrophy type symptoms.
Medication: Creon 10,000, Vitamins A,D+E, Serevent, Salbutamol, Paracetamol, Ondansetron, Nefopam, Ursodeoxycholic Acid,  Lofepramine, Slow-Sodium, Azithromycin, Ciprofloxacin, Omeprazole, Tobi Ineb, Fresubin Liquid Feed, Skandishakes. I use PEP device as my physio.
Had a Port-a-cath fitted on chest wall since Nov 05
Help support the forums so we can support you:  http://www.healingwell.com/donate
Sometimes, I feel that I should go and play with the thunder - then I get scared and run away.


momto3
Veteran Member


Date Joined Nov 2006
Total Posts : 1331
   Posted 3/24/2009 9:05 AM (GMT -7)   
I'm happy to hear your son does not have CF.  Yes, a carrier sounds about right, and does he display any symptoms? My oldest son suffers from fat malabsorption, lung issues as well as the severe constipation and failure to gain weight.  He tested for R75Q and M470V, at least I think that is the second mutation, it has been so long.  The doctor at childrens wanted to write a paper on carriers displaying symptoms, and told us to bring him back for more testing when he turned 12, but we didn't want to put him through any more tests.
 
I hope your son is doing well.

tmlindsey
Regular Member


Date Joined Sep 2005
Total Posts : 78
   Posted 3/25/2009 8:53 AM (GMT -7)   
I'm not sure if the symptoms he has is related to being a CF carrier or something that has yet to be diagnosed.  He has clubbed fingers and toes, sweaty palms and feet (I mean to the point his socks are always damp), and he becomes out of breathe very easy with activity.  He also has severe headaches with no diagnoses.

momto3
Veteran Member


Date Joined Nov 2006
Total Posts : 1331
   Posted 3/26/2009 7:08 AM (GMT -7)   
As for the sweating, it takes a lot for my son to visibly sweat.  The summer heat is his least favorite, but when most of us are sweating in the high heat, he will not be.  For him he just can't gain weight like he should, and we tried the high calorie shakes (scandi shakes) sp? and also the pancreatic enzymes, and when he was diagnosed in 4th grade, he only weighed 30lbs, and currently he weighs maybe 85lbs and he is 5"4.  I can't remember all of the symptoms of CF but I hope you find an answer soon, especialy his headaches, I'm sorry he is in so much pain with them.
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