Anti mda 5
My 6-year-old son was recently diagnosed with Anti-MDA5 positive Juvenile Dermatomyositis with ILD (lung involvement) and we are honestly overwhelmed and looking for experiences/advice from anyone who has dealt with similar cases.
Current findings:
Anti-MDA5 strongly positive
Ro52 positive
HRCT showing ILD with:
Organizing Pneumonia (OP) pattern
possible NSIP pattern
progressing upper lobe involvement
Recent complication:
pneumomediastinum (air leakage)
possible small pneumothorax
Currently admitted in hospital and on high-pressure oxygen support
Symptoms/history:
Child was surprisingly active and playful until recently
Mild cough (especially while speaking loudly)
Oxygen around 94%
No major muscle weakness clinically
Current confusion:
Some doctors wanted immediate aggressive immunosuppression (high-dose steroids/rituximab etc.), while others wanted more evaluation first. Lung biopsy was discussed initially but now most specialists feel diagnosis is already strongly supported by antibodies + CT pattern.
We have consulted:
Pediatric rheumatologists
Pulmonologists
Thoracic radiology opinion
Currently under treatment locally due to emergency admission, while also planning consultation with Dr. Raju Khubchandani.
Main questions:
Has anyone seen pediatric MDA5 ILD improve significantly with treatment?
How reversible is OP/NSIP inflammatory pattern if treated early?
Any experiences with pneumomediastinum in MDA5 cases?
How long did oxygen dependency last if present?
Any advice for parents navigating this emotionally and medically?
We understand this is a serious condition, but we are trying to stay realistic while also hopeful. Any experiences, insights, or guidance would genuinely help.