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told to disregard 2 positive sweat tests

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Posted 8/25/2006 10:23 AM (GMT -7)
Hi all - Thursday my 3 year old had a sweat test done with a positive result, so they did another one on her other arm.  Positive as well.  Now the pediatrician tells us to "disregard" these results and we will see a specialist on Monday who "does these test all the time" so we can rely on that result.

I would be happy to disregard the positive result, believe me.  My child does not have any respiratory symptoms, other than frequent and hard-to-get-rid-of ear infections.  She has strong GI symptoms - grease floating in toilet water, distended abdomen since birth, weight gain has slowed, starving and eating all the time.  Our state does not currently test for CF as part of its newborn screenings.

Is it possible to have CF without respiratory symptoms?  We are having a hard time waiting until Monday to know "for sure".  I feel better just posting.  Thanks, and God Bless all of you that are living with this disease.

Posted 8/25/2006 10:47 AM (GMT -7)

Hello KT'smom and welcome to HW!

Was your child sweat tested at a or with an accredited affiliated CF clinic/team?  What method did they use to sweat test your child?  Gibson/Cooke is the prefered method and Wescor is also an accepted method.  Wescor is the "watch" type method.  Do you know what your child's chloride numbers were?

I can truly sympathize with you on the wait... It is very hard to do.  The doctors need to have 2 positive sweat tests (done on different days) to make a diagnosis.  On Monday, they should have the results within hours for you.

CF can present in many different ways.  GI problems being one of them. Her symptoms sound suggestive of CF. The next test for your child will probably be the fecal/elastase test. Depending upon her results, she will than be on her way to getting the help she needs to thrive.

Know that we are all here for you in this difficult time...

Posted 8/25/2006 11:05 AM (GMT -7)

Thanks for that.  I just viewed similar symptoms mentioned by a g-ma in some prior posts.

They used the Wescor method.  Interesting to watch the lab tech's demeanor change as he saw the results.  Then of course he turns to me and asks - "does she cough a lot".  Funny, I knew CF was a possibilty when I researched her symptoms but because of the absence of respiratory symptoms I went into the test assuming we were just ruling CF out. 

Would like to have words with my pediatrician.  Not sure why he would send us to a place where he doesn't believe the results, when there are places he obviously could send us where he will believe the results.  Frustrating. smurf

Posted 8/25/2006 6:32 PM (GMT -7)
There is a such thing as a false negative, but not a false positive. If you've had 2 positive tests, then your child has CF. Make sure that you are going to an accredited CF centre. And also demand a DNA blood test. If she's had 2 positive tests, then she needs to have a blood test as well (they are more accurate, and will confirm what mutations she has).

CF does present itself in different ways. Some people have such mild symptoms that they are not diagnosed until adulthood. Some do not have respiratory problems, some do not have digestive problems. Its all based on what genes you have, and mutations.

Good luck and keep pushing for an answer. It does sound like CF to me.
Posted 9/23/2006 2:23 PM (GMT -7)
I am following up to let anyone and everyone know that GI symptoms only CAN still be cf, as mentioned by some of you.  I wish more doc's knew this, because as I look back my DD had so many symptons; my pediatrician just did not connect the dots.

What a month it has been.  The Monday after I my original post here, we got a "real" positive sweat test; eight days later we got the throat culture back - PA.  Genetics back a week after that - Double Delta F508.  Liver enzyme problem as well.  Now we are on 7 meds and a regimen of two hours of breathing/CPT a day.  I can't believe how far I've come, though, from that nervous, anxious, on the verge of a breakdown mom.  It is because of this forum and others like it. 

Please any parents out there who have a gut feeling (no pun intended) that something is wrong push for a cf test.  By an accredited facility.  You are your child's only voice. 

 

Posted 9/23/2006 3:09 PM (GMT -7)
Sorry to hear about the diagnosis of cf but glad to see that you are feeling better about the whole thing. At least you now know what you are dealing with. My son was also diagnosed with cf (at 2 weeks of age). He will be 3 in December. His mutations are also Double Delta F508. Hope your daughter is gaining weight and doing better now that she is on the proper meds.
Posted 9/23/2006 7:04 PM (GMT -7)
Hello,

 I am a Mother of a 18 Month old and due with another in december. my daughter just got diagnosed with CF. she was sent to a pulminologist. she also had the sweat test done 2 times and both came back positive, i was terrified of what was going to happen. she had all the symptoms that you explain. she only weighs 20 lbs. it is really over welming at first. my daughter also didn't have many respitory problems just weezing. she is doing very good with all her treatments. and she just has to take them 2 times a day and has to have enzyme pills before every meal and snack thats about the hardest thing to get used to. but i would definetly not disreguard the 2 positive tests. it seems that she does have CF. my daughter is doing great, she is so much happier now with the enzymes. they soak up the fat in foods that wasn't happening before thats why there poop is how it is and they are always starving  because without the enzymes they arn't absorbing any fats in foods. i hope this is helpful. i got on here thinking i could find some people to chat with.

michaelas mom

Posted 9/25/2006 6:42 AM (GMT -7)

Hello KT's mom.  Sorry about your diagnosis for your child.  Now you can concentrate on keeping her well.  The hardest part is the "not knowing" and waiting for test results.  At least you know for sure what your "gut feelings" were.  I too, had that mother's instinct that something just was not right (after having 3 children prior to my 4'th).

Welcome Michaela's mom!  I have started my son on the Carnation VHC vanilla swirl drinks (he did not like the chocalate), you can get them free when filling a prescription for the Creon enzymes (and the adek vitamins are included), it is called the "more extra helpings" program.  We are still battling with the weight (he is still 58lbs at 12 years old), hopefully he starts to gain.

Hugs to everyone on the forum!

Posted 9/25/2006 6:52 AM (GMT -7)
My daughters doc wants her to drink 2-4 pediasures a day which is going pritty good some days she really wants it and some she just doesn't. i just had to take her to the ER sat night cause she was really fussy and wouln't eat at all and she has ear infections in both ears from her cold she has. now she is on antibiotics. i really hope she starts gaining to. at 18 months and she only weighs 20.5 lbs. she is surrently on enzymes and vitamax and through a program i guess she gets them both for free until she is 2 no matter the income. it makes me happy cause her pulmacourt alone costs me $90 a month.

Melissa
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