questions about cystic fibrosis for son

[missy70usa]

hello my name is missy. i am single mom for 4 kids.3 of which have asthma.the reason i write to you is to see if one can help me.i have a son who is only 6 years old.his name is kieran. well when kieran was born he was sick all the time with cronic ear inf. and upper resiptori inf.all the time back and forth to his peds dr.well just recently i took kieran to asthma dr.cause i was getting no where with his peds dr.kieran seen the asthma dr before this past new years eve.and the dr listen to me well.i told him how kieran cough all the time and sinues inf.he suggest that i ask the ped dr to give kieran pumavox vaccine to see if it would help him and also had a ear inf. he gave me asthma meds to use and antibotic for my son. ant told me to bring him back in 2 weeks.well now we at now at the 2 week vist kieran back to asthma still coughing.and still got the sinues inf.well i told him at this time kieran got the vaccine.and had a flu shot too in november.now he suggested kieran go get a sweat test.which is schulede for feb 13 2004.now i got 2 other daughter with asthma ages 14 years and 3 years old.but they are good.never heard of this test before.now on jan 28 2004 i called asthma dr to say my son is still coughing and congested.he was put on bixan antibotic.and qvar inhaler along with nasnox for his nosekieran coughs will only go away for 2 weeks at a time then he can cough for a month. this may sound stupid and that i am rambling on but i am really scared.he cant go out and play in cold cause he will cough.alsokieran was put on predisone liquid.plz some one help me.am i jumping the gun and a too worried mother of a unmanged asthmic child are does this sound alot like my son has cystic fibrosis

 

[Diane]

Hi Missy, I dont think you are jumping the gun when it comes to worrying about your son. The problem with cystic fibrosis is, that it has some of the same symptoms as asthma. The best thing to do is get the sweat test, which is what you are doing in Feb. and go from there. At least after the test, if he has cf, it will be properly treated, and if he doesnt have cf, they will look elsewhere and get to the problem. I can only imagine how scary it must be to sit and wait, while your son isnt feeling well, but soon you will have your answer. In the mean time try to keep him as well as you can. I'll keep you in my prayers <img src="i/expressions/face-icon-small-smile.gif" border="0"> good luck with the testing ~ Diane 39 / cf/ Diabetes / b.cepacia

 

[Drea]

Missy,I don't think you are jumping the gun either. I was a wreck before my daughter was tested and so was she! The constant ear infections and pneumonia that she had were terrible. I can really relate to how worried you must be. Diane is right, lots of the asthma symptoms also happen to people with CF. Many are misdiagnosed with "asthma and allergies" when it is really CF. However, I want to ask about if he has any gastro symptoms. Does he have loose runny foul stools or really foul, painful gas? Does he have a problem gaining or maintaining weight? Most (but not all) people with CF also have pancreatic problems as well as lung/sinus problems. These things can also be indicators pf possible CF. Have you asked to have the test date moved up? waiting 2 weeks seems like a long time to have to wait to have the testing done. Also make sure that wherever you have the test done it is a "CF Center" and not just a local hospital. Not every hospital does the test effectively. Go to www.cff.org to find the CF center that is close to you.I hope he doesn't have CFAndreamom of Rachel 5 with CF and one on the way

 

[anonymous]

Hello, IT IS really neccessary that you do the sweat chloride test but be careful it may be tricky it may be neg. and still be CF like what happened to me. So if it were up to me i would go for a genetic test. I dont want to scare you but this is what happened to me and costed me very very much. Rami 21 W/ CF

 

[anonymous]

Hello, IT IS really neccessary that you do the sweat chloride test but be careful it may be tricky it may be neg. and still be CF like what happened to me. So if it were up to me i would go for a genetic test. I dont want to scare you but this is what happened to me and costed me very very much. Rami 21 W/ CF

 

[anonymous]

Rami,Would you mind telling us your story about your sweat test? Do you know what your score was? Was it a false negative, or are you one of the few people who truelly have a negative sweat test but still have cf? Would you mind sharing which mutations you have, if you know? Thanks!

 

[anonymous]

hello thank you for reply. my sons sweat test is being done in local hosiptal here in scranton pa .where we live.i appracite your advice and will call this monday.to speak at more lenght with the ashtma dr.he is a very good dr.cause thank god for him.kieran peds dr sat back and did notthing for us all the time when i told her about his coughing.because he was not wheezing i was told his lungs are clear and .i sit there and go dr my son been coughing the whole month long.as for kieran stools they are all the time green and look greasy.and excuse me are long if you can understand what i mean.right now at this time he been complaing of upset stomache.he now is on bixan antibotic.predisone.xopnex.qvar inhaler.he now suffers from nasel congestion.i use to.i try to shield kieran now more then ever .i dont let him outside cause its too cold.i used to let people smoke in my home now i dont .i more protive of kieran.and why i dont know.he also got learning promblems in school so they just move him to learning support class. i pray to god kieran asthma is just out of control but.if its cf i'll take one day at a timealso kieran is fatigued alot.and as for his weight he is very skinny child.when he was born he was 8pounds 9oz 21inches

 

[anonymous]

my 3/12 yr old daughter is always sick with sinusis stuffy all the time they tested her last year pos for asthma goes to allergest they found she is allergic to alot of thinks she has had an anaflaxsis from fish she has been on steriods antibiotics she takes singular, polmacourt breathing treatment when she gets real sick she is always tied , danielle has had a sweat test last yr aswell when she couldnt clear up from a sinus infection after 8 weeks of antibiotics allergist said take her of antibiotics she just has allergies .now this winter after no releaf from her stuffy nose and now she is having bulky stools I made a DR app today for danielle where her sweat test was done at the local hospital lab one year ago it was neg .Could it be pos now? should I insist on another test but in boston thank deb

 

[anonymous]

Missy,

When I was in grade 8 I was diagnosed with allergie related asthma. My cough didn't really start until I was 19-20 and antibitotics did clear it up but only for a short time. I was fed up with my doctor telling me to take my inhaler more often and the antibitoics so I demanded too see a specialst. I was diagnosed with CF at the age of 22.

believe me you are not jumping the gun.

Dave 30 w/cf

 

[anonymous]

Deb,
I also tested neg for sweat test at age 12 for cf I had constant sinus infections, asthma, allergies and eventualyy they got it under control and i live a normal life until age 29 icould not fight off thisinfection, was hospitalized , long story short, another sweat test was neg, genetic testing confirmed cf deltaF508 mutation. I have bronchiectasis,cultured pseudomanas.
Insist on a genetic test or second opinion. Good luck! My testing was done in boston also.
Amy 31 w/cf

 

[anonymous]

Also make sure the test is done at a CF center. My twin brother had pneumonia bad when we were 6 and he was tested at our local hospital and it came back negative.

Dave 30 w/cf