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.
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.
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.
Post Edited (imondeck) : 8/21/2007 6:12:46 AM (GMT-6)
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.
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.
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. about 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 THAKYOU. BYE.
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.
Post Edited (Darkies Gem) : 8/28/2007 8:58:05 AM (GMT-6)
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.
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.