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...
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.
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!