Bronchiolitis obliterans in infants: our complete routine (respiratory physiotherapy, NIV, TR3, PowerBreathe)

Hello everyone,

For parents seeking information about bronchiolitis obliterans in infants, particularly regarding respiratory physiotherapy and daily treatments, I wanted to share our routine with our 1-year-old son.

In addition to medications, here's what we've implemented:

Respiratory physiotherapy 1 session per day of approximately 1 hour (except Sundays) After his hospital discharge, he had 2 per day for 6 months

Motor physiotherapy 3 sessions per week to catch up on his developmental delay Initially, it was 1 session per day for 6 months We noticed that this also had a positive impact on his breathing

TR3 1 session per day

PowerBreathe (new since turning 1 year old) 1 session per day

NIV (non-invasive ventilation) Approximately 3 hours per day, during naps and early evening He doesn't tolerate it continuously, so we adapt to what he can handle

Thanks to this routine, combined with medical treatments, he's been able to go without supplemental oxygen day and night for about a month now.

It's not easy every day, it's very demanding, but we can see that consistency makes a real difference.

If other parents of children with bronchiolitis obliterans have implemented different or complementary routines, I'd really be interested in exchanging experiences.

Hang in there everyone 🙏