SMILES

The Craniofacial Support Group called Smiles can help you.



<b>From: </b>Gregory Zimonopoulos

<b>Category: </b>Pierre Robin Syndrome

<b>Date: </b>3/31/97

<b>Time: </b>1:18:07 PM

<b>Remote Name: </b>127.0.0.1




<h3>Comments</h3>


We got the syndrome is there anyone with related problems out
there?

The Craniofacial Support Group can help you!



<b>From: </b>Mary Ann Zimonopoulos

<b>Category: </b>Pierre Robin Syndrome

<b>Date: </b>4/4/97

<b>Time: </b>2:59:41 PM

<b>Remote Name: </b>127.0.0.1




<h3>Comments</h3>


We have the same problem too. What should we do?

The Craniofacial Support Group can help you!



<b>From: </b>Mary Ann Zimonopoulos

<b>Category: </b>Pierre Robin Syndrome

<b>Date: </b>4/4/97

<b>Time: </b>2:59:41 PM

<b>Remote Name: </b>127.0.0.1




<h3>Comments</h3>


We have the same problem too. What should we do?

Our daughter has Pierre Robin. She is now three years old and
doing great. If you have any questions, please let us know. It
was a very difficult situation for us in the beginning. However,
as she grew the problems she had became less difficult to handle.
Contact us at MCCrowell@Juno.Com.







M

Our little boy,Theo, had a trach until he was 6 months old and
his cleft palate was repaired when he was 4 days old. He is now
almost 13 months old and is doing well except for excessive
snoring when he sleeps. Was this ever a problem for your little
girl? Also, does she have any speech/language problems due to
Pierre Robin? Thank you for offering your help.

Hello!I am so glad to hear Theo is doing so well! Remember me
his nurse way back when??E-Mail me @ gordonsthomas@msn.com I
would love to hear more about how hes doing.

Just found this website. Our son Alex is going to be 6 years
old next month and he was born with Pierre Robin Syndrome. We had
a very rough time and he was trached for just over 4 years. He
has been without a trache now for over 18 months. He also was
thought to have a syndrome called Campomelic dysplasia. I would
love to hear from anyone with a child who has similiar findings.
I would also like to know more about campomelic dysplasia. I also
would like to offer my support or knowledge to any family living
with a Pierre Robin child with a trache. Please contact me at
tzator@idirect.com.

Could I make a suggestion??? If your child has Pierre Robin
Sequence (Syndrome) and he/she is snoring loudly, Take the child
immediately to whoever is their provider dealing with PRS and
have them set up a sleep study. My daughter had several episodes
with this....your child could be suffering from distructive sleep
disorder in easier terms sleep apnea. This is a serious and
potentially health harming condition that can lead to pulmonary
hypertention (it might be hypotention I just can't remember the
spelling--sorry)this condition is irreversible. Some of the signs
is lathargism, bed wetting (especially if previously dry)
snoring, labored breathing (is the chest/stomach area really
caving in while he/she sleeps. I cannot stress the importance of
a sleep study being performed. Record the childs sleeping on a
tape recorder and play it for the doctor. If that still doesn't
do it ask to be refered to a pediatric pulmonarist.

my name is Laura Mott. I am sixteen years old and am doing a
research on sids. I would greatly appreciate it if you could send
me some information on the Robin Syndrome. Again, thank you for
any information yiu can send me on this topic.



Sincerely, Laura Mott

We just had a baby that was diagnosed with Campomelic
Dysplasia (CDA). We also would like some information concerning
this.

Our daughter Cathleen was born 3/28/98 with Pierre Robin
syndrom. I would be interested in discussing what we should be
doing for her to avoid mistakes in her development

What a surprise ! Our baby's called Théo and he was born with
a Pierre Robin Syndrome in 1997/08/06 Who is your Théo ?



Pierre

My daughter Michele was born in 1992. She also has Pierre
Robin. Also, she has many more problems that can go along with
Pierre Robin. Now she is a 6 year girl with Epilepsy,Pierre
Robin, Stickler Syndrome, Low Blood Sugar,Asthma, and a heart
murmur and had a clefe palate that has since been repaired when
she was 14 months old. She has had several surgerys-clefe palate,
pharagly flap(twice) 9 sets of tubes. Each time do to the Pierre
Robin she has ended up in ICU for at least 2 weeks if not longer.
Right now she is getting ready for speech therapy. Thank You,
Hope to hear some comments from someone with this Syndrome

I just gave birth to a daughter with Pierre-Robin Syndrome on
July 2, 1999. I would like to know if anyone has experiences they
can share with me.

I gave birth to a baby girl on July 2, 1999 with Pierre-Robin
Syndrome. Is there any information you can share with me?