Jaye:  Don't know yet if anyone else has suggested this, as I am 
playing "catch-up" today after being off for the 4th!  Happy Independence Day 
to all US Lactnetters.
Has this baby had a medical (specifically, neurological evaluation) or a 
speech/OT therapy eval done?  If not, I would suggest mom get the referrals 
immediately.  Sounds like there is a lot more going on than posterior tongue 
tie.  From the info you have given, I would be wondering if this baby has some 
kind of syndrome.  Where is baby at developmentally?
Keep us posted.

Pam Hirsch, BSN,RN,IBCLC
Clinical Lead, Lactation Services
Advocate Good Shepherd Hospital
Barrington, IL    USA

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