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First a Positive, now a negative...which one's right??

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Posted 7/18/2006 1:21 PM (GMT -7)
My 2 year old son has had health issues since birth.  At 4 months he was diagnosed with GERD, then at 6 months he was hospitalized over night with RSV.  From 4-6 months he maintained a weight of 15lbs until I switched formulas to Alimentum.  He then gained weight, but was dealing with constipation so was put on Reglan in addition to the Prilosec for the GERD.  Around a year old he started having diahrea daily, so we took him off of the reglan.  This lasted about a month, then back to the constipation.  At 1 year 8 months he had a gastric emptying study done which showed delayed motility.  He's now on:  Prevacid, Flovent, Reglan, Miralax and Erithromyicin in order to keep the GERD and the constipation away.  HOWEVER  he still battles with constipation.  Within a single day he can go from a super runny diaper (due to the meds) to one that's hard as a rock, causing him to scream in pain while he goes.    We switched GI doctors since the original one was continuously wanting to wean him off of the reglan/prevacid.   The new doctor, determined to get to the cause of this had a sweat chloride test done to rule out CF.  

 

My son's first test came back with a 74.   Then the doctor ordered another sweat chloride test along with a fecal elastace and a fecal fat spot test.   This second sweat test came back with a number of 36!!!   We're still waiting for the results of the stool studies. 

 

While they were trying to rule this out, I started to do a lot more looking into the symptoms of CF.  My son has had 2 respiratory illnesses causing him to be on the neubulizer (one hospitalization), however he also tends to get any cold that he comes into contact with.  He continues to have bouts of constipation despite the medications that he's on.  Most of the stools are a very light tan almost yellow in color (TMI, I know...) and are very stinky.  If they're not little pebbles, or baseball sized, they're very thick, yet runny if that makes any sense.

 

I'm not sure what to think at this point in time.  The pediatrician says that with this second test being negative, that if the stool studies are negative, then he doesn't have CF.  My thoughts are, what about this first test???  and is it common to see such different results between the 2 tests?    Lots of questions....

 

Thanks for reading!

cabner

Posted 7/18/2006 11:42 PM (GMT -7)
CF people often taste salty. If you wet your lips, kiss him and your lips taste salty then that could be a sign. Do his stools float or look greasy/oily? That is another sign. My grand-daughter had a distended stomach and very thin arms and legs before she was diagnosed and had very runny greasy stools. I'm sure others will be more helpful. I hope that you feel like you are making some progress soon and that the doctors get to the root of the problem.

Sea 2
Posted 7/19/2006 6:29 AM (GMT -7)

Hello Cabner.  Welcome to Healingwell!

Where were the two sweat tests performed at?  Were they both at CF accredited centers that you know of?

I believe the Gibson/Cooke method of sweat testing is the prefered test.  There are several other methods of sweat testing.

My son had the Wescor and the Gibson/Cooke, both of his were positive.  I believe that his pulmo said the different tests that are performed at the same time (both arms) and or on different days (must have 2 seperate tests for diagnosis) should be in the range of no more or less than a difference of 15 in the scores/totals. 

I have some links on information about the sweat tests.  I will post them in a bit.

Has your doctor mentioned doing a gene mutation test (blood anyalysis)?

Good luck and hope you find your answers for your little boy.


Posted 7/19/2006 7:50 PM (GMT -7)
He had the Macroduct (coil) test for both. One on the right arm the second on the left. The lab isn't CFF accredited, I found out about that after the second was scheduled. After talking with the lady in the lab, I found out that just from last week they had 2 false positives (3 with ours), yet only average 2 test/day, so that's a 30%false positive rate if all 10 test that week came back positive!!!! I'm waiting for the stool studies to come back, when I get that call, I'll be pushing for the gene test!!
I never dreamed that the two test would be soooo different!!! I expected, if any difference for it to possibly be in the 60's the secvond time around if it turned out lower than the first!.
I'll post again once I get to chat with the doctor.
Thanks for the support!!
Posted 7/20/2006 6:46 AM (GMT -7)

I would schedule another sweat test at an accredited center.  Doesn't sound like they are performing them right.

Here is a link for the guidelines on sweat testing, keep in mind the link is from the UK.  It goes into great detail and information (I found it interesting). 

http://www.acb.org.uk/docs/sweat.pdf

Good luck!

Posted 7/20/2006 6:03 PM (GMT -7)
I would definitly schedule a sweat test at an accredited CF centre. I would also push for a dna blood test as well. There have been known cases, where results came back negative, but a blood test showed CF.
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