SMILES

Hi,

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!

Hi Michelle- our pediatrician said Mia had characteristics of Pierre Robin because she has a recessed jaw and when she was born her tongue would close off her air supply. She eventually figured out to move her tongue. No one could tell me if Mia had Pierre Robin- just that she had characteristics. Once a pediatrician in the office (not hers but another when we went to a sick visit) stepped out of the room and I got up and looked at her chart and it said she definitely had Pierre Robin. Then I said to him "does she have Pierre Robin" and he couldn't give me a straight answr. Then our Plastic surgeon said she may or may not have it- no one will ever know. He said that her recessed jaw could be that she inherited specific traits from me and my husband. So, its very strange but no one actually "diagnosed" mia with pierre robin they just hint that she may or may not have it. hope this helps. Sandy

I guess PRS is hard to diagnose with the symptoms being so generalized. I have often wondered if Jackson has it, as he has the recessed jaw, and a large tongue. But those same characteristics can also be associated with clefts too, so I'm not sure how you determine if it's actually PRS.
I'm not positive on this, but I think the genetic specialist can test for it.
Jackson's does seem less noticeable the older he gets.
Allison

Do you have a geneticist through your cleft team? If not, I highly recommend that you see one. A geneticist knows all of the characteristics and associations of the hundreds of syndromes that can be associated with cleft palate. If they can do testing for PRS, the geneticist will be the best one to decide if he/she thinks your child should be tested for this syndrome or any other syndrome.

My son Max has Pierre Robin, he was diagnosed with this at birth by our Genetic Dr. They usually have these 3 criteria: cleft palate, obstructed airway (from the tongue being back so far), and small or recessed jaw. Our son's airway was so obstructed that he was either going to have to have a trach and G-tube or jaw distraction surgery - which we chose. His breathing was 100% after that surgery.

Our surgeon has said it is possible Avery will have to have the jaw surgery as well, after his palate is closed. His chin is very small and recessed. But no breathing issues really.....I guess we just have to wait and see. Nobody ever mentioned PRS, not even the geneticist.

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