Does anyone have any info/experience regarding Pierre Robin Sequence? I think I've convinced myself that Kylie has the condition. She has (had) a cleft palate and has a recessed jaw. (She had her soft palate repaired at 9 months.) I asked her pediatrician & oral surgeon & to be honest, neither knew what Pierre Robin is. Maybe someone knows who in Las Vegas can evaluate/assess her? The only thing is that I don't really see the characteristic of a "balled up tongue." She has had breathing issues though. She's had to be given oxygen & breathing treatments a couple of times now. Her oxygen level seems to be low at times. Nothing I can visually notice but when monitored it measures low 90s, even high 80s. Anyway, I was wondering if that is related to Pierre Robin? I guess I'm a little confused about PRS & I can't find too much info on the internet about it other than a few stories of babies that had to have trach tubes put in at birth. Poor babies...talk about a rough start.
Any info anyone has would definitely be appreciated. Thanks!
