Diagnosis, I want your details!

[anonymous]

I have read some of the posts on the late diagnosis', which I find absolutely fascinating, and it got me wondering??? How and when was everyone diagnosed. I was diagnosed at 6 weeks old in 1975 at John Hopkins due to failure to thrive(I weighed less at 6weeks than I did at birth). My doc wanted me genetically typed a couple years ago, I still remember the letter from the testing company, it told me that I had CF and that I might need therapy to help deal with my "new" diagnosis. My wife and I laughed, I may need therapy but not because of that letter.



Luke 29/cf who was fortunate his dad was in the Coast Guard near John Hopkins

 

[serendipity730]

I was diagnosed at birth, because I had meconium illeus.

 

[anonymous]

my son was diagnosed at 7 months after a 4 week bout with broncholitis

 

[anonymous]

I was diagnosed at age 29 after culturing pseudomanas, have moderate bronchiectasis and tested positive for delta f508 mutation

 

[jleigh]

I was diagnosed 3 years ago at the age of 31 after coming down with a bi-lobar pneumonia 4 yrs ago and the findings on the chest films showed bronchiectasis. (Had signs of CF for many years...pulmonary, GI and sinus...although too mild to have suspected CF) I was then sweat tested...very borderline results. Then the genetics came back with one copy of DF508. In Nov. I had my blood sent off to Ambry and it came back as one copy of DF508, 5T/9T and M470V polymorphisms. Since the diagnosis, I have cultured PA, Staph and am colonized with steno.

Jen 34 w/cf

 

[anonymous]

I was diagnosed at 7 mths of age with failure to thrive. D 30 fwcf

 

[anonymous]

My son was diagnosed at age 3 when he started having rectal prolapses. His growth curve had been dropping dramatically (we had been questioning his abnormal stools for over a year) also, but the doctor insisted he was fine. The doctor also insisted he was fine when the prolapses started, but we finally put our foot down and insisted on further testing to make sure he was "fine". We have a new doctor now.

 

[EmilysMom]

Emily was diagnosed at two days when she had to have surgery for Meconium Ileus. Interesting note: The same doctor that did her MI surgery, 18 years later, implanted her port.

 

[allie1]

My daughter was also diagnosed at age 3 after having a rectal prolapse. She had "Failure to Thrive", severe bellyaches, abnormal stools and was having these stools on average, 6 times a day. Her doctors insisted she was fine and that her stools were normal. We have since changed pediatricians but I still have a lot of resentment for them not catching it sooner.

Amy

 

[jaime]

I was diagnosed when I had meconium ileus surgery, I was two days old, sent to Childrens hospital in Boston.
I cant even imagine the thoughts that went thru my moms head when she heard "Your daughter has cystic fibrosis"--or any parents head for that matter. I give all you parents tons of credit for being so strong!!!
At least for most of us (people w/ cf) its all we have ever known, so really I dont even feel like I was ever "diagnosed"--its just me, its part of who I am, like my blue eyes or my brown hair.

 

[cfgirl38]

I was diagnost at 30. Although I'v always had symptoms of CF. Sinus, lung infections after lung infection, scarring on the lungs, never had symptoms of digestion or bowels until a year ago. Now that I know I also have brochiactisus, PA. Eva 35wCF

 

[Jo20784]

i was diagnosed at 2 weeks old in 1984 in Milton Keynes general hospital in england and was the first CF baby born there . i refused to feed when i was first born and the doctors just told my mum give her time. i started to feed but after a week i kept being sick very violently so i was rushed to hospital and then had loads of tests run on me finally with a sweat test i was diagnosed with CF and put on special milk which my mum says tasted horrible lol .

 

[spicyone18]

I was diagnosed at birth due to Meconium Ileus.

 

[LindseyRose]

I was eight months old when I was diagnosed because of failure to thrive and the nasty poops. The docs kept telling my mom she wasn't feeding me enough and she laughed at them! I have never heard of meconium ilius, what is that?

 

[shamrock]

I was diagnosed in Crumlin hospital at the age of 6months-failure to thrive. By the way, what is meconium illues?

 

[anonymous]

the answer to your meconium question lies in this link.

http://www.eurorad.org/case.cfm?uid=1219


Luke

 

[ClashPunk82]

I was diagnosed at 6 weeks. They tested me because my older brother has it too. He wasn't diagnosed until he was 6. My mom always knew he had it though but the doctor's thought she was crazy. They finally tested him after he had a rectal prolapse and sure enough he had it.

Nicole 22 CF

 

[anonymous]

My son was diagnosed at 18 mos after me complaining for 18 mos that something was wrong. The kid starved all day and would 'poop' 6-9 times a day. I filmed his poop one morning after I had absolutely had it with him waking up and having a mess inside his jammies every morning. (So the DR could see what I was talking about) There wasn't a diaper that could survive one of his nights of BM's. My Dr thought he was fine even though he wasn't growing...A GI specialist in the 'city' ruled CF out and told me if he was actually having that many BM's it was a phase. Talk about mad!! Finally we made it to a CF clinic and got our answer.

 

[anonymous]

I was diagnosed at 6 weeks because I had three older siblings with CF.

-Ann 25/cf

 

[JohnnaMarie]

I was diagnosed at 5 when my younger brother was born he had CF ( he had that bowel surgery) and they thought they should test me because I was having all the Cf symptoms. Our local family doctor was a real joke. My parents had been telling him to test me for Cf for years and he would not test me because "it was so rare she can't have that." They took me to Omaha and tested me and i had a positive sweat test and then was put on enzymes.