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THINGS THAT MIMIC CF HELP

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Posted 8/19/2007 4:46 PM (GMT 0)
I AM NEW HERE. MY DAUGHTER HAS SOMETHING THAT ACTS LIKE CF BUT THE DRS. SAYS ITS NOT CF. SHE IS CONSTANTLY IN THE HOSPITAL GETTING SUCTIONED OUT. SHE HAS SO MUCH MUCUS. SHE GETS PT AT HOME EVERYDAY( LIKE TAPS) HALF HOUR LATER SHE IS ALL FILLED UP AGAIN. SHE HAS HAD COLLAPED LUNGS & EVERYTHING FROM THIS. SHE HAS A HARD TIME BREATHING FROM THIS. THE DRS. DONT KNOW WHAT TO DO FOR HER & THEY CANT FIGURE WHATS WRONG WITH HER. HAS ANYONE ELSE HEARD OF ANYTHING THAT MIMICS CF? THANKYOU.

                                                                                                                                 DAWN

Posted 8/19/2007 8:17 PM (GMT 0)

Hi Dawn  and welcome. I wish you a good stay here. I am Kitt.

Please look around and post as you feel comfortable. Feel free to ask any questions you may have about the site. I am  welcoming you on behalf of all of Heling Well.

One of the CF Members will be along to help you out with your question.
Posted 8/19/2007 10:13 PM (GMT 0)
THANKS KITT

                 DAWN

Posted 8/20/2007 4:57 PM (GMT 0)

Dawn

The only one I know of is Celiac Disease. I would think that in the early presentation of the disease it could be thought to be other respiratory problems.

I hope this helps you a bit. Please  stay with us and keep posting.

((((((((((((((((HUGS)))))))))))))))

Kitt

Posted 8/21/2007 12:00 PM (GMT 0)
Hello Dawn and welcome to Healing Well!

There are disorders that occur with defects in the cilia. Just google cilia disease/disorders and you will get some info. Here is one link: http://www.lungusa.org/site/pp.asp?c=dvLUK9O0E&b=35690

I hope your daughter gets some relief and you get some answers. I know how hard it is to not know what is wrong with your child.





Sandra
Posted 8/22/2007 2:21 AM (GMT 0)
KITT

THANKS FOR THAT BUT THEY ALSO RULED THAT OUT. WE HAD TO BRING HER TO THE DRS. TODAY SHE IS SO WHEEZY CONGESTED & IT'S HARD FOR HER TO BREATH. THEY ARE GOING TO SUCTION HER OUT AGAIN ON MONDAY. SHE IS 28 YRS. OLD SHE HAD TO QUIT WORK A FEW MONTHS AGO DUE TO IT. SHE HAS BEEN IN THE HOSPITAL 13 TIMES IN 12 MONTHS. THE DRS. ALL THE SPECIALIST DONT KNOW WHAT TO DO FOR HER. SHE IS GETTING SCARED  NOW WHEN IT STARTS ITS GETTING WORST. THE DRS. TELL HER WE DON'T KNOW WHAT TO DO FOR YOU ANYMORE. SO WE DONT KNOW WHAT TO DO. AGAIN THANKS FOR ALL YOUR HELP.

                                                                                                                                        DAWN 

Posted 8/22/2007 1:40 PM (GMT 0)

SANDRA

 THANKYOU FOR RESPONDING. MY DAUGHTERS DR. RULED THAT OUT. IF YOU CAN THINK OF ANYTHING ELSE I WOULD APPRECIATE THE HELP WE DONT KNOW WHERE ELSE OR WHO ELSE TO TAKE HER TO. SHE IS WITH ONE OF THE TOP HOSPITALS & DRS. IN BOSTON MA. SHE HAS TO GO IN ON MONDAY TO BE SUCTIONED OUT AGAIN. SORRY I KNOW THAT IS GROSS TO HEAR. AGAIN THANKYOU. YOU & KITT HAVE GIVEN ME A WARM WELCOMING HERE. AND I FEEL CONFORTABLE HERE. THANKYOU FOR MAKING ME FEEL THIS WAY ON A NEW BOARD.

                                                                                                                                        DAWN

Posted 8/22/2007 10:43 PM (GMT 0)
Dawn,

I assume your daughter has been seen by a pulmonoligist?

National Jewish Medical and Research Center has been named the best respiratory hospital in the nation by U.S. News & World Report for the tenth year in a row.

They are located in Denver, CO. I know there are many great hospitals but I thought you might take a look at thier Website and see if they have a question and answer link.

Please keep posting. Gentle Hugs to you.

Kitt
Posted 8/23/2007 1:19 PM (GMT 0)
KITT

I AM SORRY I USE ALL CAPITAL LETTERS. I AM NOT SHOUTING AT YOU MY EYES ARE NOT WHAT THEY USE TO BE SORRY. YES SHE HAS SEEN SEVERAL PULMONOLIGIST. SEE ALL MY KIDS HAVE HAD ASTHMA SINCE BIRTH. EXCEPT THIS DAUGHTER SHE GOT IT IN SECOND GRADE. I ALMOST LOSS MY SON TO ASTHMA AT 8 WEEKS OLD. THE DAY AFTER HE WAS DIAGNOSED. BUT NOW THE OTHER 2 HAVE OUT GROWN IT. I ASKED OUR PRIMARY DR. THAT PLACE SHE TOLD US NO STAY AWAY FROM THAT PLACE. BUT I WILL ASK HER DR. IN BOSTON WHEN WE GO ON MONDAY. AGAIN THANK YOU. BYE.
Posted 8/23/2007 2:24 PM (GMT 0)
Morning]

I would guess you have wonderful physicians in your area and I have no personal experience with this hospital.

I sure pray you find the answer soon.

Gentle Hugs to you.
Posted 8/28/2007 2:55 PM (GMT 0)
Hiya, would also like to welcome you to the boards.

The going really does sound like it's tough.

One thing I find with CF, it's not the amount of mucous produced, it's how thick and sticky it is. Very gross I know.

Symtpoms to me, sound similar to Bronchiectasis. I know a lot of older patients diagnosed with CF, have previosly been treated for this, as it is similar. Here s a webiste with some info:
http://www.patient.co.uk/showdoc/23069038/

Hope they find an answer soon, so your daughter can start getting better.
Friendly hugs
Gem
Posted 8/30/2007 3:55 AM (GMT 0)
Dawn, my daughter exhibits the exact symptoms, but she is only 15 months old-doctors say it is not Cf, but they don't know what it is-She has had a full pulmonology work-up,including bronchoscopy, now we are getting GI work-up, tomm.we will see an immunologist/allergist- she had some bloodwork drawn on her immune panels that was abnormal-also has an appt.w/neurologist-She is just a baby and these are all pediatric specialists-what caught my eye was your wording- I have asked it so many times-what acts like CF, but isn't Cf-please keep me posted on how your daughter is doing and maybe we can help each other get our girls' better- My daughter has been in hospital twice in last month-collapsed lungs and chronic mucous EVERYDAY clogging chest that she cannot clear out on her own-EVERYDAY she has brthing treatmnts to open her up and starts 3-4 hours of coughing mucous out of chest
Posted 8/31/2007 3:01 AM (GMT 0)

THAT DOES SOUND LIKE MY DAUGHTER. MY DAUGHTER PRODUCES A LOT OF THICK MUCUS & IT'S VERY STICKY. I AM SORRY TO HEAR about YOUR BABY. MY DAUGHTER HAS BEEN TESTED FOR EVERYTHING & THEY CANT FIGURE IT OUT. SHE JUST FINISHED 6 MONTHS OF A HEMOGLOBIN TRANSFUSIONS TO SEE IF IT WOULD BUILD UP HER AMMUNE SYSTEM. BUT THAT DIDNT WORK EITHER. WHAT STATE DO YOU LIVE IN? WE LIVE IN MASS. I AM REALLY SORRY THAT YOUR BABY HAS TO GO THROUGH THAT. AND YOU TOO IT IS VERY NERVE RACKING. PLEASE KEEP IN TOUCH. THEY SUCTIONED MY DAUGHTER OUT THE OTHER DAY. A FEW HOURS LATER SHE WAS SO FILLED UP AGAIN. GIVE YOUR BABY A KISS FOR ME & I'LL SAY SOME PRAYERS FOR YOUR FAMILY & FOR HER.                          

                                                                                                                                                                              DAWN                       

                                               

Posted 8/31/2007 3:14 AM (GMT 0)

Darkies Gem said...
Hiya, would also like to welcome you to the boards.

The going really does sound like it's tough.

One thing I find with CF, it's not the amount of mucous produced, it's how thick and sticky it is. Very gross I know.

Symtpoms to me, sound similar to Bronchiectasis. I know a lot of older patients diagnosed with CF, have previosly been treated for this, as it is similar. Here s a webiste with some info:
http://www.patient.co.uk/showdoc/23069038/

Hope they find an answer soon, so your daughter can start getting better.
Friendly hugs
Gem

 THANKYOU FOR YOR WARM WELCOME. SHE HAS A LOT OF THICK & STICKY MUCUS. THE DR. CANT BELEIVE HOW THICK & STICKY IT IS. HE HAS RULED OUT BRONCHIECTASIS. SHE HAS SEE ALL TYPES OF DRS. NOW THEY ARE GOING TO SEND HER ANOTHER INFECTOUS DISEASE DR. BECAUSE SHE HAS A TOP DR. IN BOSTON & HE DONT KNOW WHERE TO GO FROM HERE EITHER SO THATS WHY HE IS SENDING HER TO ANOTHER INFECTIOUS DISEASE DR, SHE ALSO HAS A LOT OF PLUGGED MUCUS POCKETS & CANT GET THEM UNPLUGED. THANKS AGAIN.

                                                                                                                                                                         DAWN

Posted 9/14/2007 4:43 AM (GMT 0)

Hi Dawn, I also suffer from the same symptoms as your daughter and as my 13yo daughter has CF I was tested for that and it came back that I was just a carrier which of course we already knew!  Has your daughter had a chest CT done?  Mine showed bronchiectasis and I was treated for this for ages without much success.  My lung function went from 100% to 50% over a couple of years and I was heaps sicker than my girl with CF.  about a year ago my respiratory doctor put me on a clinical trial for a drug called bronchitol.  It's inhaled mannitol and my life has improved so much.  I live in Australia and at this stage Bronchitol is still in the trial stage but I think it maybe approved for use in the United States.  Ask about it anyway, it has to be worth a try.  When my daughter with CF is very mucousy I've given it to her and she coughs everything up over a day or so, nothing has worked that well before.  Good luck.

Posted 2/16/2014 2:30 PM (GMT 0)
Hi there, my hubby has been sick for over a month, had original infection a month ago, diagnosed and treated for pnuemonia, got so sick he quit smoking, and now he has what has been diagnosed as a secondary infection, which the doctor first suspected to be cf, however, he has not gotten a confirmation phone call on his labs and scans...which of course, accding to the doc, means, good news, however, my husband has been upper resp congested, ears plugged, and major phlegm and sputum producing, gagging, weary, restricted breathing, cannot hear well, and is generally poor right now.
He is on his second round of antibiotics (he began with a tooth infection around Thanksgiving) and then, developed pnuemonia right after Christmas (about new years, or just before). Here we are, middle of February, and he's STILL sick.
Do you have any ideas?
I am looking into Bronchiectasis (the symptoms are as right on for him as CF seemed to be) and I'm also thinking maybe plueracy, with a side of double sinus and ear infections? Maybe...hystoplasmosis?
I'm very very worried.
Can anyone shine a light on this?
Posted 5/1/2016 4:44 AM (GMT 0)
Why do they say it is not CF? Have they tested for all ~2000 mutations?
The sweat test is unreliable. as does the Heel Prick Test in babies miss a significant number of cases.
The Genetic Testing used often only tests for a selection of the more common mutations ( Healthscope currently tests for 44). The Victorian Clinical Genetics Services (VCGS) warns "If no gene change is found, you are not a carrier of the most common ....,but there is still a small risk ....of rarer gene changes".
The only test that looks for all mutations is to sequence the gene as was done for my wife in 2009 by a Laboratory in Canterbury, NZ
Posted 3/20/2018 10:14 PM (GMT 0)
Hi dawn I know your post was 10years ago but my 15yr old son is having similar problems
We started in at are home hospital then to Syracuse,Burlington and now looking at going to Boston
No one seems to have ever seen this. Did you ever get a diagonals?
My son has a unnamed bacteria in his air way that causes mucus to build up
And restricting his breathing. This started after having bronchitis which turned into pneumonia.
Every time they do a scope he’s good for about 2 days then right back to a
Gurgling sound when he breathe out. And yes all test worst are coming back
Negative. Please help thank you
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