Why Get A Second Opinion?

A second opinion is a valuable resource when you are faced with difficult choices regarding your child’s treatment options. Depending on where you live and your availability for travel, you may have limited access to highly specialized care. CAPPSKIDS.ORG brings all of the condition-specific specialists to you in one place allowing you to receive a 2nd opinion from a known specialist in this particular field.

Does My Health Insurance Cover This Second Opinion?

The CAPPSKIDS.ORG Second Opinion Program is a self-pay program with a minimal fee. Our fees are in place in order to fund the program. There are assistance programs in place so that if you have difficulty making this payment you can contact us to see if you qualify for a free consultation.

Navigating your child's diagnosis of Craniosynostosis

Does my baby have a syndrome?

This can be a loaded question. Sometimes the answer is …. we don’t know.

Craniosynostosis syndromes are ever-evolving. There are more than 180 syndromes that manifest craniosynostosis, and significant progress has been made in understanding their clinical and molecular aspects.

Craniosynostosis can be divided into two main groups: syndromic and nonsyndromic.

FGFR2, FGFR3, FGFR1, TWIST1 and EFNB1 genes are major causative genes of genetic syndromes associated with craniosynostosis.

Syndromes most frequently associated with craniosynostosis include Apert, Crouzon, Pfeiffer, Carpenter, Craniofrontonasal Dysplasia, Muenke, Beare-Stevenson Cutis Gyrata, Baller-Gerold Syndrome, Antley-Bixler Syndrome, Saethre-Chotzen, Boston-Type Craniosynostosis.

In the past decade, significant progress has been made in understanding the genetic basis of certain craniosynostosis syndromes, with mutations in the fibroblast growth factor (FGF) signaling pathway playing a central role.

CAPPSKIDS remains dedicated to working with various teams and studies to help better understand Craniosynostosis and the genetics behind this condition.

If you are concerned that your child may have a Craniosynostosis Syndrome, contact us at info@cappskids.org

It is extremely important that your child be evaluated and treated by a multidisciplinary craniofacial team that is experienced in treating syndromic and complex cases of Craniosynostosis.

Is my baby’s Craniosynostosis Syndromic?

Does my baby have a syndrome?