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cystic fibrosis without failure to thrive???

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Cystic Fibrosis
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Posted 5/15/2004 2:24 AM (GMT 0)
My son is 4 months old and has been sick since birth.  He has chronic cough, mucus, difficulty passing stool, acid reflux, milk allergy, wheezing, and recurrent infections.  He DOES NOT have failure to thrive, though.  He weighs 17 lbs.and is in the 75% for weight.  We have been to many diff. docs and hosps. trying to help him feel better with no luck.  He is now on an inhaler and breathing treatment.  At a check up 2 days ago, the doctor finally suggested a sweat test.  I am just wondering if anyone has a child or knows of one diagnosed with CF without failure to thrive? Desperately seeking answers!!!
Posted 5/17/2004 2:10 AM (GMT 0)
My daughter was not diagnosed with CF until she was almost five years old. The only symptom she had as a infant was a persistant, recurrent cough. She thrived- usually in the 75th to 100th percentiles in weight and height.

At a month before her fifth birthday, she had pancreatitis and that led to her diagnosis (a very long, very frustrating story). Anyway, she is still in the 75th percentile in height and is now in the 50+ percentile for weight for her age group.

CF varies alot from patient to patient. Good luck with your son. Sometimes it's a relief to find out what the problem is for sure.
Posted 5/17/2004 1:05 PM (GMT 0)
Hopey's Mom,
Thank you so much for your reply. I guess I'm not surprised to hear your story as I do more research. I am wondering though if I should push for genetic testing as he is only scheduled to have the sweat test next Mon. He is also scheduled to have a bunch of immune deficiency testing. Have you found the sweat test to be reliable? I have done the infamous "lick" test and he does not taste salty, just sweaty. Well, any response would be greatly apprecited. Thanks again.
Posted 5/17/2004 9:29 PM (GMT 0)
HI,
My daughter did not start having "failure to thrive" issues until she was about 6 months old. Up until then, she grew well and was at about the 50-75% all the time. She had really bad reflux but nothing else. It wasn't until she came down with her first pneumonia at about 6&1/2 months that she started having loose runny bowel movements and other signs of pancreatic insufficiency that end up causing "failure to thrive" Feel free to check out our site at http://groups.msn.com/TeamRachelJane

Andrea
Posted 5/18/2004 3:58 PM (GMT 0)
Andrea,
Thank you so much for your response and helpful information. I am still wondering if anyone has info on the sweat test. My son does not taste salty at all, and he is scheduled for a sweat test next week. I am wondering if I should push for the gentic testing. I have read some things about negative sweat tests but a positive genetic test. Is there any truth to these rumors? Any response would be great.

Holly
Posted 5/18/2004 10:36 PM (GMT 0)
Holly,
Unfortuantely there is no "ultimate" CF test. Some gene mutations are known for lower sweat test/negative sweat test scores. Not all of the gene's mutations for CF have been found, so both tests leave a "margin of error" It is best to have the sweat test first and based on the results from that and how the kids "present" clinicly, they will do genetic testing. If you get a dx of CF from the sweat test they usually do the genetic testing now anyway...........(though I understand that this was not always the case more than 5 or 6 years ago) Also remember that sweat tastes salty. try the lick test a few hours after a bath, but not when the baby's been sweating a lot. Have you ever noticed if his hands and feet "prue up" quickly in the tub? It seems that kids with CF tend to "prune" more quickly than non CF kids. (just an observation form a few parents that I know of)
Andrea
Posted 5/19/2004 12:03 AM (GMT 0)

andrea,

Thanks SO much for all the helpful info.  I haven't paid much attention to the pruning factor, but I will next time he takes a bath. 

He will be having his sweat test at a lab and I am wondering if I should push to have it at a CF center?  Any truth to the rumors of bad lab work?  Well, you've been more than helpful, thanks so much.

HOlly

Posted 5/19/2004 2:25 PM (GMT 0)
DEFINATELY have the sweat test done at a lab that is attached to a CF center. CF center labs do this test a lot, most local places don't do it very often, it is more of an "experience" type of thing. The more experience the lab has doing the test, the better. Are you in the US? If you are go to CFF.org and find the closest center for you and get it done there. Good luck and post when you find out if he has CF. I really hope that he doesn't have it but if he does, there are some really good resources online for support.
Andrea
Posted 6/13/2004 11:06 PM (GMT 0)
Hi! I was diagnosed the day I was born when I had two strokes and crystalization in my intestines. I had surgery when I was three days old and had another stroke on the operating table. I wasn't ready to go then, and I'm not ready to go now :-) Though I go into the hospital every august and February with something or another. I graduated college with an associates in 6 years with a 3.8 GPA (hospital visits interrupted a lot) and I work full time as head Workforce Management agent for two years now. :0) I have my ups and my way downs, but I always come out on top and fighting. So I would say that I'm not a failure to thrive child.

For the prune thing on the fingers and toes....I was also diagnosed with Raynolds (sp sorry) that is what causes the pruning.(as what my doctors have told me) It is a friend of CF, but you can have it without having CF.
Posted 6/2/2005 9:27 PM (GMT 0)
Hi,

I'm new on this website. I'm a 14 yr old girl with CF, and wasn't diagnosed until I was nine, mainly because I was so healthy looking. I'm taller than my mom (5'5" and 145 lbs) and have no clubbing or anything. From a glance, I'd appear to be a 'normal', non-CFer (I do take pills and inhalers, though). So, yes, it is possible to have CF and thrive.

Best Wishes.

Katie
Posted 6/13/2005 4:34 PM (GMT 0)
I don't know much about the medical details of CF yet, but my friend, a 16 year old girl with CF, seems to have reached a perfectly normal height. In fact, she's taller than all of her family that I've met. However, there is also no doubt she is significantly skinnier than any of them. However, I don't know if this is attributed to failure to thrive, or just the digestive issues, not to mention she's quite the athlete.
Posted 8/3/2005 10:51 PM (GMT 0)
Hi. I am 21 years old and never had a problem gaining weight. I was always skinny, but so was my family. As far as my height and weight though they were always in perfect proportion. I was always encouraged to gain weight because I always fought off infections better with a little extra weight - but I was normal and did not have failure to thrive!

Hope everything is okay!

- Katy
Posted 1/5/2006 3:45 AM (GMT 0)
hi i am new to this board. i had a sister who died at age 9 with cf and just found out at 22 yrs old i have cf. neither one of us thrived well. actually when i was younger i ate all the time. about 6 mos ago everything i ate started coming up. i vomited for 6 mos straight now. they thought i had a eating disorder at first. i told them no i dont i dont starve myself cuz i dont get hungry, well then my bm stop happening, im always sick and im down to 104 lbs. im 5'5. i lost 30 lbs in 2 mos, well they tested me by a stool test and a cat scan and some blood work. the stool test showed i have fatty stools, and the cscan came back showinfg i have pancreas insuffiency while all the bllod work cam back post. well i wish u the best and i dont know if this is any help or not but i hope so
faithful
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