If your child has recently been diagnosed with 5p- syndrome, we hope that the below resources can be helpful
Potential Medical Considerations
While 5p- syndrome can affect impacted individuals in different ways, you may want to consult with your child’s doctors about the following physical ailments that are more commonly seen in 5p- individuals:
● Ear, nose, throat: Swallowing difficulties, laryngomalacia, laryngeal cleft, tracheomalacia, deafness, auditory processing issues
● Eyes: Strabismus, vision processing issues, blindness or low vision
● Gastrointestinal: Reflux, constipation, intestinal function
● Heart: Holes in heart, heart murmur
● Lungs: Chronic pneumonia, asthma
● Mouth: Cleft lip, cleft palate, small jaw, grinding of teeth, teeth misalignment, lip and tongue ties
Early Intervention is Key
Most 5p- individuals experience developmental delay, but early intervention therapies can help to mitigate the delay and allow your child to achieve a fuller potential.
Depending on how your child is affected by the syndrome, you may be interested in the following types of therapies:
● Physical therapy
● Occupational therapy
● Feeding therapy
● Speech therapy
● Vision therapy
Contact the agency that oversees the child development early intervention program in your state for further information and an evaluation.
Connect with Other 5p- Families
Receiving a diagnosis of 5p- syndrome for your child is both an emotionally and mentally challenging experience.
We want you to know that you are not alone and that there are various resources for 5p- families to learn more about the syndrome and how to care for their loved one and to connect to other 5p- families.
The following organizations are not affiliated with 5pRA, but may provide useful information and support for 5p- families: