Pierre Robin Network

A place to call home, where you are never alone

 

 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 

PRS Fact Sheet

Pierre Robin Network (PRN) is a group for those who have a common interest in Pierre Robin Sequence. We are parents of children with PRS, caregivers, adults with PRS and medical professionals. We network with each other to provide support to each other and educate ourselves about PRS and the issues it brings with it.

We share our experiences. We do not offer medical advice, please contact your health care provider for all medical advice.  The goal of our group is to reach as many people as possible and allow them to network with each other. There is not much information available about PRS, we want to change that.

Pierre Robin Sequence was first discovered in 1923 by physician Pierre Robin. Characteristics generally include micrognathia (small jaw), cleft palate, glossoptosis (downward placed tongue) and airway obstruction. The chin is recessed which causes the tongue to fall back and obstruct the airway.

PRS children should be seen by an experienced craniofacial or cleft palate team, in addition to the pediatrician. PRS can be secondary to other conditions and we feel it is best to have every child with PRS seen by a pediatric geneticist to check for any other conditions.

Breathing issues are sometimes hard to control with the PRS infant. We have found children will not gain weight and grow without proper airway management. The airway issues are managed by: positioning of the baby, tongue/lip adhesion or possible Tracheostomy or jaw distraction surgery. As the jaw grows, the airway issues should become easier to manage. Each child is different and will have different responses to the treatments they are given. There is no standard timeline for jaw growth, palate repair or any of the other treatments involved with PRS.

The palate is repaired generally between 9 and 18 months old. There are many factors involved in deciding this time and it needs to be discussed with your childís team.

Feeding issues are perhaps the biggest challenge for infants with PRS. They have to learn to coordinate eating, breathing and swallowing at the same time, which is a very difficult task. It takes patience on behalf of the caregiver as well. You may have to try a combination of different bottles and nipples.

Our web site has numerous resources and tips regarding feeding issues. Some children end up with g-tubes because of their difficulty with bottle feedings. We would encourage to keep using the bottle even if your child has a g-tube. Oral stimulation is very important.

Speech therapy may be needed for some children. This service may be available from your local Early Intervention Agency. This agency can review your childís developmental stages also.

Our goal is to educate, share experiences and offer support. We are looking for volunteers for our outreach program, to help with the web site, research, fundraising and those who help with any projects.

Pierre Robin Network was founded in May of 1999 by the mother of a child with PRS who was seeking to help other parents of children diagnosed with PRS. We do not want others to face these issues alone. We offer our support through the Internet, personal contact and through our outreach program. There are others who have shared the same experiences and are willing to help and listen.

Our web site includes information about the issues surrounding PRS children. We also provide an electronic bulletin board and an email list server so you can connect with others at your convenience. We can provide one on one support as well via telephone, letters or personal contact, where possible.

If you are the parent of a child with PRS, an adult with PRS or a professional wanting to learn from a parentís perspective, please join us.

PRS is a rare condition and it brings some unique issues along with it. We donít have all the answers but we will try to help you or steer you in the right direction. We are always seeking new information and new resources for our families.

 

Pierre Robin Network  3604 Biscayne Quincy, IL 62305
Email us at info@pierrerobin.org

 DISCLAIMER: This site and the Pierre Robin Email List server, and the information contained within them, are designed to be relevant to parents, adults and professionals interested in PRS. The information supplied here is not to be used as a diagnostic tool and is not intended to replace or supplement individual medical consultation. Please take this information to your child's physician or your physician and discuss it together. Pierre Robin Network, the author of these pages and the members of the email list server accept no responsibility for the misuse of the information contained within this website or within the email list server messages and files.

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