SMILES

Need information! We have had a Pt referred with syndrome

I am a parent who had two children with the syndrome. I would
love to answer any questions you or the parents have. The problem
with this syndrome is the airway is not fully grown at the time
of birth. Therefore the tongue has been noted to block the
passageway. The syndrome also causes the child to not be able to
gain weight due to the factor of resp. distress. Some children
require surgical intervention (ex. lip-tongue adhesision, NG
feeds and sometimes require a tracheastomy as my daughter did).
Any other questions can be addressed to my Email
charlieo.kmbs.com

There is not a whole lot of useful information available about
Pierre Robin. I conducted a literature search from the hospital I
work from, with little results. The best results came from the
social worker affiliated with my son's craniofacial team at the
Hospital for Sick Children. I am now the proud possessor of about
8-10 articles on PR. Contacting the most specialized craniofacial
team in your area may be a good route to go. If you would like
the references for the articles I do have, please contact me at
sandlos@golden.net. The biggest problem with articles on Pierre
Robin is that PR refers only to a group of symptoms rather than a
diagnostic category. Thus, the outlook as well as the obstacles
each child faces varies widely depending not only on severity but
also on whether or not the PR is part of another syndrome or not.
So for those of us who have children with ideopathic PR sequence,
there's even less out there. Good luck!

My son was born with
laryngomalacia/tracheomalacia/bracheomalacia and has been
classified has having a mild case of pierre robin, he does not
have any cleft problems. It's been really hard finding any
information. When I've asked for information about pierre robin I
get information about clefts. So it's been hard to distinguish
how they're related. I haven't been able to find any other
children with the same medical condition. He also had cranial
sagittal synotosis.