cystic fibrosis - Cystic Fibrosis Message Board

tenis41 · 06-15-2002, 08:17 PM

Hi, I have two daughter 16 and 18 that were just diagnosed with CF. They have been very healthy all their lives, no cases of pnemonia or lung problems. My younger one was diagnosed first because she has had a chronic cough and sinus problems for about three years. Last year she had sinus surgery, and still she had the cough and also thick mucous when she coughed. I am shocked that they tested positive. They are both athletes and in very good physical health. They did pulmonary tests and lung xrays on my 16 year old and they came back very good. They are going to be treated and scneiders childrens hospital and the doctors are talking about putting them on pulmozeme with a nebulizer. Can somebody please tell me if they believe they have a mild case and any info on the drug pulmozyme would be appreciated.

LW · 06-17-2002, 01:06 PM

If you don't mind me asking what type of test confirmed they have CF? And if it was a Sweat Chloride what was their levels?

My four year old son's level was 53 they are re-testing him on July 26th. Sometimes the level can determine what degree they have CF.

tenis41 · 06-17-2002, 08:16 PM

Both my daughters were sweat tested. one was 97 the other 104. They are going to be tested again.

LW · 06-18-2002, 03:36 AM

From what I have learned a normal reading is from between 10-35 anything over 60-70 is conclusive to having CF.

The fact that your girls are in their teens and have not already had any significant complications is a good sign. Make sure they keep up their healthy life style it must be helping.

I checked out the drug you were wondering about, its administered in a inhalation form and its purpose is to reduce mucus and enable clearance of airways and is also in some cases suppose to reduce the frequency of respiratory infection. This is not widely used and the FDA recalled some lines between 2000 - 2001. I would suggest researching thoroughly for your girls own safety.

Hope this helps, good luck!

[This message has been edited by moderator2 (edited 06-18-2002).]

rugratsmomma · 06-18-2002, 03:06 PM

Just to add one about pulmozyme...It can be a wonderful drug but it can also have some not so good side-effects.

My 7 year-old experienced hemoptyosis while on pulmozyme(aka coughing up blood),I believe hemopytosis is a listed side-effect of pulmozyme,even if its not it does happen.

As for the sweat test....My dd's sweat test was over 100(not sure of the exact number),so far her symptoms seem mild.It does sound like theirs is mild also.

Good luck to you and your girls

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Cassidy mommy to 5 rugrats and expecting #6
"Theres 2 things I've learned"1.Theres a God and 2 I'm not Him"