Rachel is there and is very satisfied with the doctors who are caring for him. So far, three ophthamologists, a neurologist and a neurosurgeon, and numerous supporting medical professionals.
Last night while going through ER, Rachel and Caleb had opportunity to really begin to discuss what was going on. We had intentionally not told him ahead of time so he wouldn't sit around and worry for days before going in. Now that it was happening, he was very relieved to know that there are explanations for the headaches and other physical symptoms he has noticed.
Today he endured three ophthamological exams; a 3-hour MRI of head and spine (now he has a headache). Doctors have stated that up to now he has compensated for the loss of brain capacity, but he's reached the limit of that option. He has excelled academically, musically and enjoys sports - a pretty successful, well-rounded adolescence.
His ailment has a name as well: meet Dandy-Walker
What is Dandy-Walker Syndrome?Dandy-Walker Syndrome is a congenital brain malformation involving the cerebellum (an area at the back of the brain that controls movement) and the fluid filled spaces around it.
The key features of this syndrome are an enlargement of the fourth ventricle (a small channel that allows fluid to flow freely between the upper and lower areas of the brain and spinal cord), a partial or complete absence of the cerebellar vermis (the area between the two cerebellar hemispheres), and cyst formation near the internal base of the skull. An increase in the size of the fluid spaces surrounding the brain as well as an increase in pressure may also be present.
The syndrome can appear dramatically or develop unnoticed. Symptoms, which often occur in early infancy, include slow motor development and progressive enlargement of the skull. In older children, symptoms of increased intracranial pressure such as irritability, vomiting, and convulsions, and signs of cerebellar dysfunction such as unsteadiness, lack of muscle coordination, or jerky movements of the eyes may occur.
Other symptoms include increased head circumference, bulging at the back of the skull, problems with the nerves that control the eyes, face and neck, and abnormal breathing patterns. Dandy-Walker Syndrome is frequently associated with disorders of other areas of the central nervous system including absence of the corpus callosum (the connecting area between the two cerebral hemispheres, and malformations of the heart, face, limbs, fingers and toes.
National institute of Neurological Disorders and Stroke
For you who are interested there a numerous web sites devoted to Dandy Walker. He does not exhibit many of the "typical" symptoms, but certainly some are evident - especially as you begin to assess them. He looks normal, is a handsome, intelligent, outgoing, fun-loving kid.
Right now (4:00 pm, 9/19/2006) we are waiting for the neurosurgeon to review all the MRIs, CTs and other tests with the pediatric neurologist to decide which of the following standard actions to pursue:
- Insert a shunt for drainage
- Drain the cyst - but without a permanent shunt
- Medication to treat the symptoms - headaches, etc.
We do not know right now when he will be dismissed from the hospital.
We covet and thank you for your prayers.
Truly, God is gracious
Mack
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