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Pierre Robin Syndrome
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Pierre Robin Syndrome
Advice
Advice of Pierre Robin Syndrome
APAP/CPAP Therapy for moderately severe Sleep Apnea. ❤
by Cynthia Murphy- Craniofacial Awareness Advocate
The day my son got his diagnosis changed my life as a parent
by Leigh Hawthorn - Pierre Robin Sequence Foundation Founder
NG and G-tube fed until 18 months old
by Anne
Aqua therapy has helped tremendously with joint pain and stiffness
by MLH
Glad his cleft palate has a multi layer closer
by Carol
Mandibular Distraction at 3 months old
by Kate
blenderized diet
by Valerie
Clappa wales amazing support
by Kirstie
Having 2 kids with this, doesn't make it any easier!
by Tasha
Jaw distraction surgery less than 2 weeks old saved my daughter from a trach
by Ariellas-Mom
Meeting others within the craniofacial community who I can relate to in more ways than one. ❤
by Cynthia Murphy- Craniofacial Awareness Advocate
The Tracheostomy saved my sons life
by Leigh Hawthorn - Pierre Robin Sequence Foundation Founder
3 surgeries
by Anne
Glad his speech is coming along
by Carol
Insisting on oral feeding opportunities without the NG tube in
by Kate
cpap, adnoid shaved, tonsils removed
by Valerie
Expect the unexpected
by Tasha
The haberman bottle was a life saver
by Ariellas-Mom
Advocating for the cause of craniofacial differences and involving EVERYONE in these efforts. We must raise awareness and enact change TOGETHER! ❤
by Cynthia Murphy- Craniofacial Awareness Advocate
My son is an amazing child, so much more than just a diagnosis
by Leigh Hawthorn - Pierre Robin Sequence Foundation Founder
Speech, or and ot
by Anne
Thankful for the craniofacial team
by Carol
Using surgical grade face masks to protect her from infection, allowing her to attend school regularly and be in hospital less
by Kate
lots of love and compassion
by Valerie
My kids do not let PRS control their choices in life
by Tasha
Speech therapy is amazing
by Ariellas-Mom