Hi everyone!
I hope it's okay that I am posting here- my son doesn't have CF, but he was diagnosed with Primary Ciliary Dyskinesia when he was two weeks old. He spent his first 2 weeks in the NICU for respiratory distress. Unfortunately, PCD treatment is based on CF management because so little is known about it. PCD manifests itself very similarly to CF but has different causes. He is 2 months old now on home oxygen at night, albuterol and hypertonic saline twice a day, and CPT 2-3 times daily.
During the past month, during his hypertonic saline treatment, his O2 has dropped to low 80's. I stop the treatment, let him recover and start back up again. This happens frequently during the remainder of the treatment. It doesn't make a difference whether he is on room air or his oxygen. I always assumed it was the saline, but I tried just giving him the saline without the albuterol first, and his did not have any low desats (just to mid 90's briefly). He was also on room air. So, now I'm thinking it was the albuterol (maybe causing bronchoconstriction?).
Does anyone have any experience or insight on this? I mentioned this to his pulmonologist, and all he said was to do the albuterol twice a day and the saline half as much once a day (this was when I thought it was the albuterol). Very frustrating... I am under the impression that the hypertonic saline is more important for mucus clearing than the albuterol, if he is only able to tolerate one.
I hope it's okay that I am posting here- my son doesn't have CF, but he was diagnosed with Primary Ciliary Dyskinesia when he was two weeks old. He spent his first 2 weeks in the NICU for respiratory distress. Unfortunately, PCD treatment is based on CF management because so little is known about it. PCD manifests itself very similarly to CF but has different causes. He is 2 months old now on home oxygen at night, albuterol and hypertonic saline twice a day, and CPT 2-3 times daily.
During the past month, during his hypertonic saline treatment, his O2 has dropped to low 80's. I stop the treatment, let him recover and start back up again. This happens frequently during the remainder of the treatment. It doesn't make a difference whether he is on room air or his oxygen. I always assumed it was the saline, but I tried just giving him the saline without the albuterol first, and his did not have any low desats (just to mid 90's briefly). He was also on room air. So, now I'm thinking it was the albuterol (maybe causing bronchoconstriction?).
Does anyone have any experience or insight on this? I mentioned this to his pulmonologist, and all he said was to do the albuterol twice a day and the saline half as much once a day (this was when I thought it was the albuterol). Very frustrating... I am under the impression that the hypertonic saline is more important for mucus clearing than the albuterol, if he is only able to tolerate one.