Guest guest Posted January 3, 2004 Report Share Posted January 3, 2004 In a message dated 1/3/2004 4:44:09 PM Central Standard Time, heritage2akrdmr@... writes: I am a mother of a 6 month old girl who has had diarrhea for six weeks an initial test for fat in her stool was positive and they are noe checking her for CF..she is a very lite eater and slow to gain weight but is still following her same growth curve, she has had congestion for 6 weeks also. My question is has anyone else been diagnosed like this? The doctor also said the test may not show CF because of her age..is there any other way to tell? Thnk BECAUSE OF HER AGE???? My daughter was 6 years old when she was diagnosed and my youngest was a year old. If your doctor told you that he can't make a diagnoses because of her age GET A NEW DOCTOR!!!!! My 6 year old daughter (at the time she is now 11) had polyps in her nose that is how we were diagnosed. She had the runny stools and stuffed up nose. She did pretty will with her weight it was more sinuses is how my daughters were diagnosed. You can have a DNA test done too if the sweat test comes back negative. Deb A Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 3, 2004 Report Share Posted January 3, 2004 In a message dated 1/3/2004 4:44:09 PM Central Standard Time, heritage2akrdmr@... writes: I am a mother of a 6 month old girl who has had diarrhea for six weeks an initial test for fat in her stool was positive and they are noe checking her for CF..she is a very lite eater and slow to gain weight but is still following her same growth curve, she has had congestion for 6 weeks also. My question is has anyone else been diagnosed like this? The doctor also said the test may not show CF because of her age..is there any other way to tell? Thnk BECAUSE OF HER AGE???? My daughter was 6 years old when she was diagnosed and my youngest was a year old. If your doctor told you that he can't make a diagnoses because of her age GET A NEW DOCTOR!!!!! My 6 year old daughter (at the time she is now 11) had polyps in her nose that is how we were diagnosed. She had the runny stools and stuffed up nose. She did pretty will with her weight it was more sinuses is how my daughters were diagnosed. You can have a DNA test done too if the sweat test comes back negative. Deb A Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 3, 2004 Report Share Posted January 3, 2004 I wish my son had been diagnosed with that alone.He had the same thing, but the 6 weeks turned in to 3 years.He went misdiagnosed until 3 yrs and 3 mos when he finally jaundiced...dr at birth(because there were so many signs) ssuggested maybe cf, but since we said we had no history of it in our families the thought was dismissed(isnt that why they make tests????),gi finally insisted we had test done anyway, low and behold!!!If youre ever unsure,test to rule it out...it cant hurt.but it could save a lot of damage. The weirdest thing is when the gi brought it up, I new right away it was cf.It was some kind of 6th sense.I didnt even need the results(or him so callously telling me the results over the phone and the fact that he would " more than likely need a liver transplant " )This dx was done by blood tests...but they asked me to do the sweat test for confirmation. Patty, mom to Ty,8wcf abd 2 wocf > I am a mother of a 6 month old girl who has had diarrhea for six > weeks an initial test for fat in her stool was positive and they are > noe checking her for CF..she is a very lite eater and slow to gain > weight but is still following her same growth curve, she has had > congestion for 6 weeks also. My question is has anyone else been > diagnosed like this? The doctor also said the test may not show CF > because of her age..is there any other way to tell? Thnk Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 3, 2004 Report Share Posted January 3, 2004 CF is a genetic disease and it can be diagnosed with a dna blood test, even for a six month old. Do not let the Doc get away with saying that it may be difficult to diagnose. What he means is " I have no idea how to diagnose this so I am going to make something up " . Ask for a referral to a CF clinic if the doctor does not do further testing. My son was born with a meconium ileus and was still misdiagnosed for 13 months that is why I am a little nervous when doctors say things like " the test may not show cf because of her age " . I hope your daughter does not have cf. There could be other explanations for fat malabsorption, but make sure the doctors test for cf thoroughly. Sara - mommy of Zach 22 months > I am a mother of a 6 month old girl who has had diarrhea for six > weeks an initial test for fat in her stool was positive and they are > noe checking her for CF..she is a very lite eater and slow to gain > weight but is still following her same growth curve, she has had > congestion for 6 weeks also. My question is has anyone else been > diagnosed like this? The doctor also said the test may not show CF > because of her age..is there any other way to tell? Thnk Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 3, 2004 Report Share Posted January 3, 2004 Yes; sweat chloride test (over 40) and dna test for all mutations of cf--hope that this helps, n Rojas, wcf, mom of 3 adults, the youngest of whom has cf, too Positve Fat study I am a mother of a 6 month old girl who has had diarrhea for six weeks an initial test for fat in her stool was positive and they are noe checking her for CF..she is a very lite eater and slow to gain weight but is still following her same growth curve, she has had congestion for 6 weeks also. My question is has anyone else been diagnosed like this? The doctor also said the test may not show CF because of her age..is there any other way to tell? Thnk ------------------------------------------- The opinions and information exchanged on this list should IN NO WAY be construed as medical advice. PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR TREATMENTS. ------------------------------------ ------------------------------------------------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 3, 2004 Report Share Posted January 3, 2004 Not sure what test your child's doctor is using that may not be reliable due to her age, but the " gold standard " test for cystic fibrosis is the sweat test. (It should ONLY be done at a hospital that has a Cystic Fibrosis Center in it, this is REALLY REALLY important. Other labs and hospitals are not qualified to do it and this is something that you should put your foot down about if sent somewhere other than a CF Center hospital for the sweat test.) If the sweat test is negative, there is still a possibility that the child has cf. A dna test can be done, but is still not 100% accurate because there are so many cf mutations and not all are detectable in the standard dna tests. One other test that can detect cf is called the nasal potential difference test (NPD.) **A much, much LESS scientific test is to lick your lips and kiss the baby on the forehead, then lick your lips again.** Salty??? The sweat of people with cf is usually (not always) much saltier than normal sweat. Again, this is not scientific and if you don't have another non-cf kid to kiss and compare to your baby, then you might go nuts trying to figure out how salty is salty. Think of it this way: if your lips were chapped and you kissed the baby's sweaty brow, would it burn your lips or not? Think saltier than a tear. My son is five years old and has cf. He was diagnosed by sweat test before he was one week old, so your child is not too young to be diagnosed. The symptoms you mention could definately be cf, but it could be a host of other conditions also. If it is cf, you will want a diagnosis as SOON AS POSSIBLE so treatment can begin. The treatment for cf can mean the difference between a sickly child and a robust child. If it is cystic fibrosis, we are here for you. If not, fantastic! (but don't give up until you find out what IS the problem.) Good luck, ~ > I am a mother of a 6 month old girl who has had diarrhea for six > weeks an initial test for fat in her stool was positive and they are > noe checking her for CF..she is a very lite eater and slow to gain > weight but is still following her same growth curve, she has had > congestion for 6 weeks also. My question is has anyone else been > diagnosed like this? The doctor also said the test may not show CF > because of her age..is there any other way to tell? Thnk Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 4, 2004 Report Share Posted January 4, 2004 In a message dated 1/3/2004 5:43:52 PM Eastern Standard Time, heritage2akrdmr@... writes: > The doctor also said the test may not show CF > because of her age.. THAT IS INSANE!!!!!!!!!!!!!!!!! Request a blood test if not a sweat test! I kind of question your Dr. Rosemary in NY with 3 children (13, 11 and 7) with CF. I have a dog named TOBI and have coined the phrase " BREATHE DAMMIT " Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 4, 2004 Report Share Posted January 4, 2004 By the time my cf kid came along they were not doing the fat test, but the elastase test--I know--poopologists forever! Love to you, , and to yours, n Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 4, 2004 Report Share Posted January 4, 2004 What a silly thing to tell you. They can diagnose CF through pre-natal testing, and they can sure test a 6 month old! Maybe it was a reference to some non-CF center hospitals having a problem collecting enough sweat from small children, but if you make sure that the hospital you go to has a CF Foundation approved CF center you shouldn't run into that problem. Go to www.CFF.org to locate the CF center nearest to you. Also DNA testing and NPD testing can show CF. Until my daughter got a lung infection at 6 months old she showed no signs of " failure to thrive " though she DID have terrible reflux. When she got sick from the lung problems all her pancreatic symptoms showed up too, and she started to lose weight. What you are experiencing MAY be CF or not. If it is, this is the best group to find for help!!!!! Mom of 5 with CF and one on the way To read about our family and our experiences with CF got to http://groups.msn.com/TeamJane Message ----- From: alicia_ribar To: cfparents Sent: Saturday, January 03, 2004 3:39 PM Subject: Positve Fat study I am a mother of a 6 month old girl who has had diarrhea for six weeks an initial test for fat in her stool was positive and they are noe checking her for CF..she is a very lite eater and slow to gain weight but is still following her same growth curve, she has had congestion for 6 weeks also. My question is has anyone else been diagnosed like this? The doctor also said the test may not show CF because of her age..is there any other way to tell? Thnk ------------------------------------------- The opinions and information exchanged on this list should IN NO WAY be construed as medical advice. PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR TREATMENTS. ------------------------------------ ------------------------------------------------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 5, 2004 Report Share Posted January 5, 2004 You've probably received a million responses already but here's my two cents. My daughter (now 15 years old) went undiagnosed for seven years....with " loose stools " being her only " symptom " .... after bringing her to the pediatrician with the same complaint for seven years, and SEVERAL inconclusive fecal fat tests, there was one word in my stool description that finally raised an eyebrow. I said, " it seems like her stools have oil in them.. " She then received four inconclusive sweat tests before I packed her in the car and drove to Boston for a positive sweat test. Don't rely on the stool test, as that will only confirm whether or not she's malabsorbing, but certainly NOT a CF diagnosis....demand a sweat test. Good luck, Shelly in MA mom to Becky 15 wcf & cfrd > I am a mother of a 6 month old girl who has had diarrhea for six > weeks an initial test for fat in her stool was positive and they are > noe checking her for CF..she is a very lite eater and slow to gain > weight but is still following her same growth curve, she has had > congestion for 6 weeks also. My question is has anyone else been > diagnosed like this? The doctor also said the test may not show CF > because of her age..is there any other way to tell? Thnk Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 12, 2004 Report Share Posted January 12, 2004 > In a message dated 1/3/2004 4:44:09 PM Central Standard Time, > heritage2akrdmr@a... writes: > I am a mother of a 6 month old girl who has had diarrhea for six > weeks an initial test for fat in her stool was positive and they are > noe checking her for CF..she is a very lite eater and slow to gain > weight but is still following her same growth curve, she has had > congestion for 6 weeks also. My question is has anyone else been > diagnosed like this? The doctor also said the test may not show CF > because of her age..is there any other way to tell? Thnk > BECAUSE OF HER AGE???? My daughter was 6 years old when she was diagnosed and > my youngest was a year old. If your doctor told you that he can't make a > diagnoses because of her age GET A NEW DOCTOR!!!!! My 6 year old daughter (at the > time she is now 11) had polyps in her nose that is how we were diagnosed. She > had the runny stools and stuffed up nose. She did pretty will with her weight > it was more sinuses is how my daughters were diagnosed. You can have a DNA > test done too if the sweat test comes back negative. Deb A > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 12, 2004 Report Share Posted January 12, 2004 In a message dated 1/12/2004 6:25:50 PM Central Standard Time, neel4him@... writes: > Quote Link to comment Share on other sites More sharing options...
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