SWCL Test results are in can anyone help...

[candiebar76]

We have finally got the results back. Our 3rd child had a 49; borderline. Now I am fighting because the hospital that ran the test says that CFF lists 25-60 as normal and 60-80 high.. No in between. However, CFF says 0-40 normal; 40-60 borderline/grey are; above 60 abnormal/definate. Now with the misunderstanding we are left with a whole new obsticle. Our Dr. thinks all is well, yet we are still questioning the possibility. Does anyone have any suggestions for us?

Candace & Bill (parents of 4; 1 possible CF)

 

[anonymous]

It doesn't sound like the hospital is recognized by the cf clinic otherwise they would most likely know the what the standards for the sweat test are. You can check by going to
<a target=_blank class=ftalternatingbarlinklarge href="http://www.cff.org/chapters_and_care_centers/
">http://www.cff.org/chapters_and_care_centers/
</a>
If it wasn't at an approved cf clinic then I would go to the nearest one and get a second sweat test. You could also call the closest cf center and get an appointment there. If you are concerned that your child has then it would probably be best to see a cf doctor. You could then also get genetic testing done if your child's doctor doesn't think it is necessary because "all is well" with your child. Hope you get some answers soon.
Sharon, mom of Sophia, 4 and Jack, 2 both with cf

 

[thelizardqueen]

I would agree with Sharon. Get yourself to an accredited clinic and demand a 2nd sweat test. You should also be going for a DNA test as well, as there such a thing as a false negative, but not a false positive. Some CFers have been known to pass sweat tests, but then have it appear in a DNA test.

 

[2005CFmom]

<a target=_blank class=ftalternatingbarlinklarge href="http://blogs.cysticfibrosis.com/blogpost.cfm?threadid=6389&catid=87
">http://blogs.cysticfibrosis.co...hreadid=6389&catid=87
</a>
Check out Alyssa's first blog entry. Here kids sweat tested normal/borderline and later tested postive with the DNA test.

You really should be pressing to get a DNA test.....but make sure it is one that screens for the known mutations, not just the most common.

 

[Alyssa]

Candace....

Darn! We talked about this possibility !!!

Keep going -- insist on genetic testing and insist that 49 is clearly a borderline number and with a borderline number plus CF symptoms genetic testing MUST be done. Also for some doctors I'm sure that a 49 plus symptoms would be enough to make the diagnosis.

Another sweat test AND FULL genetic testing should be done. If you are not being supported where you are at, change doctors - heck for that matter change doctors anyway and insist on someone giving you a referral to a CF clinic. They will handle things correctly.

 

[julie]

Candace and Bill,

I ditto what others have said.. #1, this DOES NOT sound like a CF accrredited center. #2. Even if a sweat test is normal or borderline, if a parent is in dobut, they have every right and should have a blood (genetic test) test done on the child. Alyssa is not the only case of this happening (passed/borderline sweat test, genetic test revealed 2 CF mutations). There are a number of cases like this.

I would pursue genetic testing at this point.

 

[Jem]

My sweat tests (and I have had 3) were all in the mid 30's. My brother has tested in the normal range as well. You really should insist on having a genetic test. It was on the 87 mutation test that we had our second gene identified and now with the more more advanced genetic test that screens for 1300 mutations, well, it would just be so much more definitive and then you can rest easy knowing you went the extra mile to either prove or disprove that your child has cf. Either way, knowing for sure is what is going to be best for your child.

 

[Ratatosk]

Max's sweat test was 32 -- normal. But he was born with a bowel obstruction, so someone else had ordered blood work. Genetic blood tests showed homozygous delta f508. Who knows why the sweat test was normal --- possibly he was too little and there wasn't enough of a sample. We WERE at an accreditted CF center.