Ciliary dyskinesia? Allergies? Who kn... - PCD Family Suppor...

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Ciliary dyskinesia? Allergies? Who knows?!?!

Sstevens84
Sstevens84

I am a mom of 20 month old twins. Focusing on Baby B. Baby B was born c section and immediately had respiratory issue and 16 days in NICU. Only needed 2 days of high flow O2. Rest of the days were spent were said because of brady/apnea or reflux. 4mos..notices alot of nasal drainage. 7 mos old 4 days in hospital for RSVP for tons.tons.tons of secretions. Multiple ear infections. Tubes placed. Drainage minimal then for a year but chronic colds every 2-3 weeks any time of year. Needing albuterol every 2 hours for 2 days. Clear mucous coughing up constantly during cold. Pulmonologist thinks it's in the head. Ent says no, lungs. I am frustrated for having my LO go through this. Do I push for diagnosis of PCD?! HELP

5 Replies
oldestnewest

It could be PCD. Is the cough wet sounding? I have a 15 year old with PCD. Kept a wet cough with ear drainage. We also did a lot of breathing treatments to help with lungs.

Sstevens84
Sstevens84 in reply to vharrison

Yes..tubes placed at 6 mos for ear infections and was noted tons of drainage. Every time she has a "cold" which is 14-21days...wet or tight congested cough needing albuterol/atrovent for 3 days around the clock. We just had a chest xray and blood work done yesterday. Butnwe have been complaining of constant nasal drainage since age 4 mos

vharrison
vharrison in reply to Sstevens84

Wow. Yes that sounds a lot like PCD. My son was born with respiratory issues from the start. Multiple antibiotics each month for ear infections and he did have pneumonia a few times. His cough sounded like he had smoked for 40 years.... just lots of mucus. Also.... his sinuses were awful regardless of what we did. We found the more active he was, the better he felt. This was as he aged. He is 15 now and was diagnosed at 14. I would pursue it if all other testing is negative... allergies, CF test etc. We did this through genetic testing and a nasal biopsy. The Pulminary Dr also did a bronch to look at his lungs and he endured a 5 hour sinus surgery. PCD is very rare and other things can mimic it but demand testing if other test are negative. My Drs didn’t believe my son had PCD and waited until I refused to leave a Pulminary visit one day without it. I hated that I was correct but glad to know why he stays sick. Because they waited he now has some minor lung damage.

Sstevens84
Sstevens84 in reply to vharrison

Our pulmonologist said this unknown term at our appt and said IF all is negative we could do a bronch. Saw that her nasal were inflamed red..aftee being on flonase for a 6 weeks now. I see her ENT in a few days and going to push it with them too. If rather be over reacting and be tolf she doesnt have it then say whoops we were late to diagnose

vharrison
vharrison in reply to Sstevens84

Yes. I agree with you!! My son did all of the nasal sprays as well. Nothing worked. He also has hearing damage in each year from all of the ear-drops and infections. And sometimes.... even genetics may not show a positive gene for PCD because not all genes have been identified. Good luck.

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