Craniosynostosis & Plagiocephaly Support Group
Craniosynostosis is a medical condition in which some or all of the sutures in the skull of an infant close too early, causing problems with normal brain and skull growth. Plagiocephaly is a condition characterized by an asymmetrical distortion (flattening of one side) of the skull. It is a common finding at birth and may be the result of a restrictive intrauterine...
Would like to know parents\' experiences with helmets, bands, and repositioning.
Our daughter who born with positional plagiocephaly along with torticollis. We identified our concerns with several Naval Pediatricians starting around the 2-month old point and finally at eight months was told they would have an x-ray taken just to please us.
The next day we received a phone call saying our daughter has craniosyntosis and we needed to be at Yale Medical Center with the Cranio-Facial team there the following morning (no other information). When we met with Yale the results were positional plagiocephaly vice craniosyntosis. Our daughter was fitted for the Doc Band along with therapy for the torticollis. She went through two Doc Bands. We seen major improvement, however, because it took so long for the pediatricians to listen to us overactive parents, she didn't received as much correction as should would have if she was diagnosed three months earlier.
Though she is eight now, we noticed the assymetry of her face, others don't unless your familiar with the condition. Sunglasses don't sit well and she has some speech related issues (may be related to the condition, may not). Overall though we did see major improvements.
Regards,
Tom in Connecticut