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I have some important questions.

Posted by on Jun. 27, 2010 at 9:13 AM
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My emily tested positive for a marker for cf she came up to me lastnight and said she was coughing up stuff. Also that she was having trouble breathing She is 5 yearsold and was diagnoised with Asthma at the age of 3.But i am now thinking that asthma could be a miss diagnoises.i am scared and so many thoughts and what ifs are flying threw my head. She has had a feeding tube sense the age of 1 and  has had failure to thrieve.when she eats a half hour later shes on the potty with a stomachache. she also tested with low digestive enzymes in her pancreas.we have to redo the stool test do blood work to have her genes tested and schedule a sweat test monday morning just the sweat test everything else will be done on tuesday or wednesday.I am so scared and I just want to lock myself in a room and cry.

1)what are the typical symtoms?

2) how was your child first diagnoised?



by on Jun. 27, 2010 at 9:13 AM
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shelly43
by Member on Jun. 27, 2010 at 9:57 AM

For accurate list of all the symptoms go to the http://www.cff.org/ but often CF patients have what is called CF related Asthma, it's not true asthma but acts the same and is treated with the same meds. I'm sorry to say your daughter sounds like she has many of the symptoms of CF. Does her skin taste salty when you kiss her? Getting the tests done is the best thing you can do and then getting her to the closest accredited CF  clinic that you can find, although it sounds like you've had a good team of doctors so far you will need a CF clinic and all the support you can get from them. The CF foundation sight has a list of all the clinics in your state on their site too........................The  good news is that their are new meds for CF being tested all the time right now and the future looks bright. When my son was Diagnosed 7 years ago, the average life span for a CF child was 24 it's now at 34 we've come a long way in a short time and the new meds are very promising...........

With all you've managed so far, CF shouldn't be that hard for you to manage, and in a way it will probably be nice to be able to know for sure what the problem is and find support and a regular set of routines to fight with................

God Bless and if you need us we're here for you!

Shelly
campmom27
by Member on Jun. 28, 2010 at 7:00 AM

My son was diagnosed at the age of 5.  We went through a lot of different testing before finally having a sweat test and being told he had CF.  Although his lungs are good, but before he was diagnosed.  When he had a cold, his boogers would hang to his knees.  Also his bowel movements had a lot of grease (looked like pizza grease) in the toilet.  He doesn't complain of  stomach pains, his pains go more into his back before a movement.  Once diagnosed and placed onto pancreatic enzymes...this has helped him digest his food properly, and he has gained a bit of weight.  When he has a cough, yes he does cough up mucus.  He does chest therapy daily which helps loosen up any mucus  stuck in his lungs. 

Good luck with your tests.

anci78
by New Member on Jun. 28, 2010 at 9:11 PM

My daughter was diagnosed with CF through the newborn screen and so far we have been lucky as she is not displaying any symptoms. I just wanted to wish you good luck at your sweat test tomorrow, we had our last one today (number 3) and it was negative, wishing you good results!!

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