pierre robin

[Debra]

I have a 4 year old son with Pierre Robin. He does not have a
cleft palate but has very severe micrognathia as well as several
other more minor 'differences' such as microstomia and possibly
microglossia. I've been searching for info on the micrognathia
(small jaw) and microglossia (small tongue). Does anyone know of
any resources? Also, I would love to link up with other parents
of children with similar problems. This site appears primarily
related to cleft lip and palate. Are there any more appropriate
sites out there? I can be contacted at Sandlos@golden.net

[mazimono]

Thank you for visiting our support group on-line. We also have
a little boy with Pierre Robin symptoms. He is now 13 months old
and seems to have overcome the critical stages of the sequence.
It is our understanding that Pierre Robin Sequence includes a
cleft palate and/or lip. It is not a common birth defect and this
is why we have intensified our efforts in collecting and
providing information on this condition. If you need information
please contact Karen Via of The Children's Hospital of the King's
Daughters at kvia@chkd.com. You may also contact Dr. V. K. Proud,
geneticist at CHKD, at vproud@chkd.com. I'm sure we can provide
you with all the information that you require.

[Angela.L.Ruby@Lexis-Nexis]

I have a 6 month old son who has been diagnosed with having
pierre robin syndrome. He does not have a cleft lip or pallete,
but they say he has a small chin. He also has laryngomalacia and
tracheomalacia. I don't really know much about pierre robin
syndrome and would like to know more also.

[Angie]

I have a 6 month old son who has been diagnosed with having
pierre robin syndrome. He does not have a cleft lip or pallete,
but they say he has a small chin. He also has laryngomalacia and
tracheomalacia. I don't really know much about pierre robin
syndrome and would like to know more also.

[goller@jet.es]

I am sure that in <a href="http://www.widesmiles.org">http://www.widesmiles.org</a>
you will find a lot of suport.



Good luck! Pere Jordi

[thetaxi@starband.net]

Debra, if you are still checking this site, I have a son with severe microglossia. He actually only has the base of a tongue. He has also had 2 jaw surgeries and may have to have another. I would love to hear from you. Marie