After receiving the initial diagnosis of Agenesis of the Corpus Callosum, the next step is to be sure that your child receives the proper medical testing and sees any necessary specialists as well.

With a diagnosis of Agenesis of the Corpus Callosum, there is the possibility for a whole variety of other problems, midline defects, chromosome disorders and genetic syndromes that can sometimes go hand-in-hand with ACC.

I have put together a list of some tests that should be performed after a diagnosis of ACC...


The information found on this website is written based upon my own personal experiences and comes from what I have learned while dealing with my son's ACC. Please seek the advice of a qualified physician for medical advice.


Your child should have a thorough overall medical evaluation performed. If possible, by a facility that specializes in seeing children with rare conditions.

Your child should be seen by a good Pediatric Ophthalmalogist. ACC can affect the optic nerve and their vision. Some kids with ACC are seen by a Neuro-Ophthalmologist. If your child is diagnosed with Septo-Optic Dysplasia (SOD) your child should be seen immediately by a good Pediatric Endocrinologist as it can affect their pituitary and is serious.

Possible appointment with a good Pediatric Endocrinologist should be considered. Hormones and growth can be affected as a result of ACC. If your child's growth is affected at any time it is a good idea to see a Pediatric Endocrinologist for testing and follow-up. Because the pituitary gland is located at midline in the brain and close to where the corpus callosum should be it is possible that the pituitary gland may not function properly so sometimes children with ACC can have problems with entering into puberty too early, entering into puberty too late or not entering into puberty at all. These issues with puberty would require medical care and follow-up by a Pediatric Endocrinologist.

Your child should be seen by a Pediatric Neurologist. It would be helpful to take along any MRI or CT Scan x-rays for the Neurologist's review. How To Get The Most From Your Neurologist Visit written by Dr. Elliott Sherr, Pediatric Neurologist.

A hearing test should be performed by an Audiologist to rule out any possible hearing loss. If hearing loss is suspected there is an elaborate hearing test which can be performed called an ABR which stands for Auditory Brainstem Response.

Metabolic screening should be done to rule out any metabolic disorders.

A chromosomes test should be performed.

Possible genetic testing should be considered.

Possible EEG to rule out any seizure activity because children with brain anomalies are at a greater risk to possibly develop seizures.

Pursue testing of any midline defects.
   (example: Matthew was born with a heart murmur and because the heart
     is located at midline the murmur could possibly be caused from something
      wrong with the heart development).

Please be advised the National Organization for Disorders of the Corpus Callosum (NODCC) website states:

"Twenty percent (20%) of patients with DCC have cardiac anomalies and therefore all DCC patients should have a careful cardiac evaluation."

*note: DCC stands for: disorder of the corpus callosum


Request a medical report from the doctors for each office visit you attend. They will be mailed to your home and then you have an accurate record of each examination for your own records. It can be very overwhelming in the beginning while all of the medical testing is going on to keep track of all that is being told to you.

Be aware that many states offer Early Intervention which is a free program for disabled children who qualify to meet their physical therapy, occupational therapy and speech/feeding therapy needs. Ask your pediatrician or developmental pediatrician for any information available about Early Intervention.

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