It's never gonna end....

I got a call from one of Dr. Frieden's fellows today. The Vascular Anomalies Clinic met today at UCSF and Dr. Hess (their radiologist) looked over Maxwell's MRI/MRA. He discovered Maxwell does have the brain abnormalities associated with PHACE Syndrome. He said his cerebellum is abnormal and the structure of his Pons didn't form properly. They said he is going to experience developemental delays. This also explaines his facial palsy. He is also experiancing diminished muscle tone, that is why he collapses at times because he doesn't have the muscle strength to hold himslf up. For some reason Kiaser didn't put Maxwell's MRI on the disk that they have as UCSF so we will get more info when they receive that. They would like him to also get a true hearing test done when he gets his throat scoped as well as a GI swallow test. So I guess now Maxwell has P-H-A-E of PHACE Syndrome. He has many more appointments coming up and I will keep you all posted as we get new and more info. For now here is some info on what the abnormalities in his brain may mean.

Cerebellum - The cerebellum integrates information from the vestibular system that indicates position and movement and uses this information to coordinate limb movements.

Pons - The pons contains nuclei that relay movement and position information from the cerebellum to the cortex. It also contains nuclei that are involved in breathing, taste and sleep

The cerebellum is folded into many lobes and lies above and behind the pons. It receives sensory input from the spinal cord, motor input from the cortex and basal ganglia and position information from the vestibular system. The cerebellum then integrates this information and influences outgoing motor pathways from the brain to coordinate movements. To demonstrate this, reach out and touch a point in front of you, such as the computer monitor -- your hand makes one smooth motion. If your cerebellum were damaged, that same motion would be very jerky as your cortex initiated a series of small muscle contractions to home in on the target point. The cerebellum may also be involved in language (fine muscle contractions of the lips and larynx), as well as other cognitive functions.


The cerebellum, located beneath the occipital lobe and posterior to the medulla and pons, is an important regulator of motor function. It connects to the brainstem by three paired bundles of nerve fibers called the superior, middle, and inferior cerebellar peduncles. Integrity of the cerebellum is necessary to perform smooth, accurate, coordinated movements; to maintain posture; and to learn and regulate complicated motor patterns. Damage to the cerebellum does not produce muscle paralysis or paresis (weakness), but rather a loss of muscle coordination called ataxia

The cerebellum is a relatively large portion of the brain located near the brain stem that is primarily responsible for motor movements, but may also play a role in speech, learning, emotions, and attention