Antley-Bixler syndrome

Healthcare/Doctors

How do I find an expert, experienced doctor, or team who takes care of Antley-Bixler syndrome?

Consult with your doctor or a genetic counselor to find specialists in your area. Find a Genetic Counselor in North America from the National Society of Genetic Counselors to discuss more. A list of craniofacial clinics can be found here: http://www.faces-cranio.org/MedCent.htm

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What specialist doctors should I see with Antley-Bixler syndrome?

If I have Antley-Bixler syndrome, what should my doctor know about managing the disease?

What specialist doctors should I see with Antley-Bixler syndrome?

After a diagnosis of Antley-Bixler syndrome (ABS) is made, an evaluation is recommended to determine the extent of disease and needs of the individual. Referral to appropriate specialist for evaluation include endocrinology, clinical genetics, neurosurgery, otolaryngology, and cardiology. Individuals with ABS without genital anomalies and disordered steroidogenesis should be seen by a specialist pediatric endocrine center throughout childhood to closely monitor their development and adjust steroid supplementation. ABS is a craniosynostosis syndrome which benefits from the multidisciplinary team approach practiced in most craniofacial clinics. The specialists usually include plastic surgeons, neurosurgeons, otolaryngologists, and dentists as well as audiologists, speech pathologists, developmental pediatricians, social workers, and medical geneticists. This team of specialist will work closely with you and your child to customize the treatment plan to your child's specific needs.

 

Consult with your doctor or medical geneticist to find specialists in your area. A medical geneticist can be found by asking your doctor for a referral or looking on the American College of Medical Geneticists website.

References
If I have Antley-Bixler syndrome, what should my doctor know about managing the disease?

If you have ABS syndrome, your primary care provider should know the management and surveillance guidelines. Referrals to necessary specialists are typically needed early on, depending on the clinical features of the affected person. Some babies with ABS syndrome may have difficulty breathing through their nose and a breathing tube may be needed immediately after birth. A baby diagnosed with ABS syndrome should be seen by a plastic surgeon early on to discuss surgical correction of craniosynostosis.

References

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