When/how was your child diagnosed?

[HollyCatheryn]

I had "failure to thrive" as my indiciation for testing. They tested with a sweat test when I was 7 months old. I don't know what amount of sweat I came up with, but my numbers were overwhelmingly positive. 60 is absolutely positive, mine was 112.

 

[anonymous]

My son was also diagnosed through the newborn screening. He had the sweat test done at 2 weeks of age. He didn't really show any symptoms of the CF until he was several months old.

 

[anonymous]

My daughter was diagnosed with a sweat test at 5 weeks of age. Her score was 97. She had trouble gaining weight so the doctor ordered the test. We did not have family history at the time. My nephew who was four was diagnosed a few after my daughter. He had mild symptoms from birth. My son was diagnosed with a sweat test at 10 days old. His score was 98. They all carry double delta 508. Hope you have some answers soon.
Sharon, mom of Sophia, 4 and Jack, 2

 

[Seana30]

Courtney was diagnosed at the age of 10.  She had severe stomach pains for 4 years prior, and only weighed 48 pounds.  She had no lung issues, and did not have "salty skin".  The only way we finally found out was I finally had a doc take me serious and asked MANY questions and ran many tests.  If I had not stamped my feet and hollered like a 2 year old, I am not sure that we would have the diagnoses today.  Courtney is now 13 and still only has digestive problems.  We keep our fingers crossed everyday that it will stay that way.Good luck to you, and please keep us informed.Seana

 

[1princess]

You know, I never really got a clear answer on what the scores meant for the sweat test - the lab guy was explaining something, but it didn't make a lot of sense. My 3 year old just tested less than 10 so I guess and hope that means she is good. All I know is I was very relieved when our pediatrician called and said it was negative - I never really got a definite number - just under 10.

I really hope you have some answers soon - noone ever want to see their kids suffer and not having answers has got to be so hard.

 

[Coops]

My daughter, Melanie was diagnosed at 4 months. We were having problems with weight gain to the point where her weight gain was so poor she eventually dropped off the plot on her weight charts. Initially she was diagnosed with a milk intolerance which worked for about a week then it was a milk and soya intolerance so we were placed on all sorts of formula concoctions until she fell seriously ill. After a two week stay in hospital she was diagnosed with the sweat test. She is now 15 months old and a picture of health but it is still a battle with her treatment.

 

[cfgirl2008]

I was diagnosed at 3 days old.


Tiffany 15 w/cf

 

[kadensmom]

How long does it take to get the results back from the sweat test? Kaden goes in tomorrow for his. I've waited two weeks for the appointment and I wonder how much longer I'll have to wait. I know, two weeks isn't that long, but each day that goes by I get more worried, especially because his cough is getting worse, and they're not doing anything for it. They're just waiting for the test results to come back. Last night he was coughing all night, and several times to the point of gagging. I want to take him in again to be checked but each time we go in they tell us there's no infection and his lungs are clear so there's nothing to do but the home remedies. When CF was first mentioned they said it was to rule it out, so I wasn't too worried, but he sure seems to fit the profile. (slow weight gain, not on the growth charts, consistant cough) I know if he tests positive its not the end of the world, but, the closer we get to testing, the more upset I feel. I think I'm losing it! Ok, my pity party is over!
Mom to Kaden (age two)

 

[anonymous]

We had our sweat test results the next day. Is a CF center doing the tests? We were sent out of network to get the test done because our hospital did not do the tests. They had us wait while they weighed the amount of sweat collected so they new they had enough to test. Hopefully they will be able to collect enough so you don't have to go back for another test.

 

[Dea]

Sweat test results usually come back in about 24 hours. Good Luck! I hope that it comes out negative...but if it doesnt...things will be fine...and it is good to know now rather than later. I am 32 with CF and was diagnosed at 6 mos. old with a positive sweat test. I had ALL the signs at birth but because it was 1973, the only test for CF was the sweat test. Please let us know what you find out! By the way, I love the name Kaden! Take Care!
Dea
32 w/CF

 

[mom2brooke]

My daughter was diagnosed when she was 7 months old after switching pediaticians. Her first pediatrician had the nerve to tell me I was just a young overreactive mother when I asked if it was normal for a child to have 15 bowel movements a day and eat twice the amount of formula a normal child her age ate. He said that every child was different and for some kids that was normal! Needless to say I found a different pediatrician. By that time she had lost what little weight she had gained since birth and was showing signs of respiratory problems. A week later she was admitted in the hospital for pnuemonia for 5-6 days, released and then admitted about 2 weeks later with pnuemonia again. This time my pediatrician said that she was going to test her for CF. Sure enough her sweat test came back positive. The folowing week they got us in with the cf clinic at Texas Childrens Hospital (which is wonderful by the way) and has been doing great every since. She has been in the hospital 4 times since then with the latest being in May for a "tune up". Luckily she actually doesn't mind the hospital because they make it as fun as they can for them which makes a 2 week stay a little more tolerable.

 

[anonymous]

We had our results back within a few hours of the test (both times). Remember that the sweat test isn't 100% accurate (positives are accurate but negatives aren't always accurate) so if his test comes back neg. and he continues to have trouble, you may want to have a blood test done. I hope you don't have to wait much longer for an answer!

Good Luck & let us know!

 

[kadensmom]

Our local Children's Hospital is doing the sweat test because Kaiser doesn't do them. I think Children's has a CF clinic, and their lab is doing the test. I'm so glad to hear that I won't have to wait another two weeks for the results! Thanks for the encouragement everyone! For some reason it me hard this morning, probably because of his coughing all night. I'm not a basket case anymore! I'll let you all know what the results are when I find out!
Thanks again!
Kaden's Mommy

 

[anonymous]

sweat test was the main thing for me, mine was over 100. I have one known mutation(DF508) and one unknown. I was tested because of a chronic,productive cough,repeated episodes of "bronchitis" and what had been misdiagnosed as uncontrollable asthma

 

[anonymous]

with both sweat tests(2 different hospitals) results were available within a few hours

 

[LoveShines4Austin]

Austin was diagnosed when he was 3 by the sweat test. His first 3 years were a nightmare. As a new mom I had no idea what was going on with his health. He had an intasusseption (the small intestine periscopes into the large intestine) at 5 months old. He had pneumonia several times. He had numerous ear infections. EVERY diaper was dirty and he was able to eat an adult size breakfast at one year old. He was always hungry! We lived in Pacific Grove, California at the time and the weather is pretty wet there. (And the doctors were idiots!) I feel that if we hadn't moved here to Redding, California...he might have not been diagnosed for a very long time. Dr. Busby is retired now, but I consider him an amazing man! He was able to poke around on Austin's tummy and ask me one simple question, "Does he sweat what looks like salt crystals?" and when I answered yes to him, he gave the preliminary diagnosis of CF. This was a 10 minute office visit! I had been to 4 other doctors and none had even asked me such a question, much less tried to rule out CF. The weather here is much warmer (110 in the summer) and the winters are a bit harsh but at least it isn't 60 degrees year round with fog rolling in daily. I think the move was best. He hasn't had much worse than the chicken pox and one nasal polyp surgery since we moved. OK....I'm done rambling. Thanks for listening <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[cfmomma]

My son was diagnosed at 18months. He was in the very bottom percentile for weight despite eating all the time. He could fill a diaper like you wouldn't believe, his nickname was "The Heinous Anus". He would cough till he vomited and had two mild cases of pneumonia. He has the double df508, but has been doing great.

 

[anonymous]

"Heinous Anus", that is hysterical! Much better than "Super Pooper"! Before my daughers diagnosis we were visting relatives out of state and they babysat so we could have an evening out. Well, we were told "she craps bigger than I do!". now we know why.<img src="i/expressions/face-icon-small-happy.gif" border="0">

 

[LoveShines4Austin]

Oh my Gosh! I hear ya. My sister refused to babysit because she threw up everytime she had to change Austin's diaper. If we went on a road trip, we had to take extra changes of clothes because he would fill up his diaper and it would run out the sides!

I remember being in a Denny's restroom one time, cleaning him up and having to actually put his clothes in a plastic bag and throw them away...they were too bad to save and we didn't even want them in the same car with us for the rest of the trip.

I had a little Italian grandmother watching him for me while I worked and she would yell at me in Italian. Her daughter would translate and tell me that she was saying I wasn't feeding him right, and she would put rice water in his bottles. He was only 5 months old and we didn't know he had CF. I felt like such a bad mother.

 

[anonymous]

Similar experience with having to throw clothes away. My husband was holding my daughter during lunch while we were out shopping at the mall. When we were finished we put her in the stroller and started walking around. My husband looks down at his shirt and say, "hmmph, I didn't have mustard on my sandwich?!" Needless to say it was not mustard, and we ended up buying him a new shirt and threw out the "mustard" one. We still get a good laugh out of that story when we think back.