Cystic Fibrosis

[Guest]

Our Daughter Madison was diagnosed with CF at 4 months. She is a 2xDF508. She "cruised" from 6 months of age until 12 months. Incredible growth.. From 20% weight/height at 4 months to 95% at 1 year. No cough, no symptoms. She gets rapid breathing when she is working hard playing or trying to walk but her Resp rate is always 20's and 30's when she sleeps.

Dec 20, 2001 she started running a fever. I took her to "walk in clinic" and she was diagnosed with Otis Media. She was prescribed Cefzil Q/2. I took her to our Pulmonologist 3 days later. He confirmed she did have an ear infection, but is was almost resolved. It was "dull" and not shiny?

She got roto-virus 2 weeks later and the fever took off again.. It went away, but she now keeps a wet (soemtimes productive cough) She has had 10 days of Omni-Cef because 1 ear is still red and lately she got three Rocephin injections. Her nose pours clear mucus. The doctor (Pediatrician, did an RSV test) although she is on monthly synagis. It was negative. Lung X-ray done. It was clear and clean. No fever..

The cough is still there. Is this likely related to the rhino-virus/post nasal drip? Are we missing anything to look for?

The Rocephin and Omni-Cef was given in case we had an ear infection or mucus in the lungs..

Oh By the way.. my daughter has cultured Psuedomonas A and Stentrophomonas Maltophilia. Both were erradicated with 28 days of IV (Tobra/Ceftazadine) and (Bactrim/Timetin) # clean cultures since. One was a bronch culture.

What a question huh?

[Guest]

In general in CF, the important components of therapy include chest physiotherapy to mobilize secretions and antibiotics. The antibiotics specifically include inhaled antibiotics for a prolonged period of time (TOBI). This is generally done in patients with cultures like your daughter's. Many patients with CF have reactive airway disease and the cough will respond usually to asthma medications such as inhalers.
[quote] Our Daughter Madison was diagnosed with CF at 4 months. She is a 2xDF508... [/quote]

[Guest]

THanks for your answer. I understand it is extremely difficult to diagnose a cough in a live patient. To do so from an email.. borders on impossibility..

Our daughter was coughing due to a cold/or post nasal drip. We know this because it stopped (the cough) at the same time her nose stopped running. As a CF parent.. We panic when things change with our child's health. We seek answers everywhere.

Madison did cough a great deal at one time due to reactionary airway issues. We had aspergillis in our AC air ducts. New AC/ ducts- NO cough..

Thanks again!!
[quote] Our Daughter Madison was diagnosed with CF at 4 months. She is a 2xDF508... [/quote]

[Guest]

you are welcome, i am glad she is better!
[quote] THanks for your answer. I understand it is extremely difficult to diagnose a cough in a live patient... [/quote]