My daughter is 5; she was diagnosed with Pierre Robin Sequence. She has a trach since she was 3 months old as she also had lower airway malacia- that seems to have gone away 2 years ago. Her tongue size and jaw position combine to cause severe sleep apnea, so she still has a trach, which is capped when she is awake. We opted not to have mandibular extraction. We learned last year that our daughter might have the bone disease called fibrous dysplasia - is this what your son has? If so, what have you learned - our daughter is undergoing more testing to determine the extent - the diagnosis was based on a CT of her head.
Wishing you well.
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