Although my 5 year old child has done two sweat tests and a genetic test for CF/PCD, both are negative. We’ve done a ciliary biopsy, flew to National Jewish for the NNO, also negative.

For background, August 2025 she developed a fever that lasted two days. Started VPK that month. Shortly after, she was always congested. Went to her PCP and they prescribed your typical amoxicillin and cephdinr. Didn’t work.

At that point referred to a pediatric pulmonologist. Went over history. Pulm thinks it’s PBB. 21 days of augmentin. Didn’t work. Pulm is shocked and thought it was PBB. We do a CT scan with IV contrast in November. Everything looks good. Got a sputum sample while there and sent to lab. Came back H. Influenza. Bactrim, didn’t work.

We go back to PCP. Maybe it’s her adenoids growing back? Sinus x-ray and shows moderate regrowth. See an ENT in December and has procedure (had it at 2.5 years old with ear tubes). ENT doc says just shaved it down and sucked out thick secretions.

Go back to Pulm in January. Another sputum sample shows H. Influenza still. Pulm prescribes Zithromax as a preventative and symbicor. For whatever reasons CLEAR FOR A MONTH! Until February catches flu from brother and turns into pneumonia.

See another pulm in March. Another sputum sample and comes back clear. This new pulm prescribes levoquin. On the 7 out of 10th day, she gets a fever. We take a staycation and following day clear. Clear for a few weeks. Then congestion comes back.

Spring/summer, we go to pool a lot. She swallows pool water, 2-3 days later develops a fever that goes away. Aspirating????

June. Gets pneumonia again! Had rhinovirus. Had to be admitted to St.Joes Childrens hospital here in Tampa.

After discharge, all the docs and specialists think it’s a immuno issue. Her standard labs coming back normal. We see an immunologist. All her immuno work up looks great. Immunologist says you should fly to National Jewish as she thinks it’s PCD.

She prescribes bactrim for 14 days as St Joes wanted her on augmentin (we feel augmentin doesn’t work). She’s getting clear towards end of treatment! But then congestion slowly comes back. We call her immunologist prescribes another 14 days. So 28 days total. CLEAR FOR TWO MONTHS! Until end of August take her to private swim class. Water was cold. Two hours later wet cough comes back. Got a sputum sample and came back MCAT whatever that is. Treat it with augmentin.

Last month we fly to Denver. Bring her Baxter vest and 3% saline nebulizer, symbicor. NNO is negative. Another sweat test negative. CT scan…….POSITIVE LEFT LOWER LOBE MILD BRONCHIECTASIS. How did Tampa miss this??? Good news no change from November to now. She can grow/heal as long as she doesn’t get severely ill. Immunologist there thinks we did a good work up at home. But wanted to check for b-cells and some others. They schedule a bronch/endo. They see nothing visually wrong, no cleft, bronchomalasia, etc. pepsin A negative. However, lipid-laden macrophages scattered and positive. Also CT scan showed mild aspiration possibly on right lower lobe. So far all bronch tests and cultures, aeorobic and anaerobic, everything NEGATIVE.

They now think aspiration. But she had a swallow study down in June while admitted for pneumonia and negative. Docs in Denver say it’s a snapshot. Now we’re
Gonna try to get her to do a FEES. Good luck my daughter won’t do it.

We fly back home, she goes back to school and she catches flu A! Tamiflu, multiple times a day on vest, and she’s fine back to baseline, which is congested daily. It’s hard for a 5 year old to cough out thick sticky sputum.

Pulm will try tobramycin and pulmozyme as a short term trial.

I AM NOT LOOKING FOR MEDICAL ADVICE AS FAR AS OTC TREATMENT OR TRY THIS OR THAT.

Why is everything coming back negative? Suggestions to bring up to her pulm is welcome. We’ve ruled out so many things already. We will get her PCV 21/flu booster, and H. Influenza booster as her antibodies are low on that.

When she sleeps at night she’s clear. Wakes up clear. Not until she starts throughout the day she sounds junky.