Hydranencephaly itself does not possess an assigned treatment regimen, treatment is symptomatic in that obstacles are conquered as they arise. However, most children are diagnosed with some variation of seizures at some stage in their little lives, the difficult part is determining the type and best treatment for the particular seizures endured.
Since 2009, the Child Neurology Foundation has recognized the week spanning from October 24-30 as Infantile Spasms Awareness week. Infantile Spasms (IS) often go unnoticed and untreated, thus awareness and aggressive treatment are essential in establishing a positive prognosis. These spasms occur in infancy, generally the first 4-8 months of life, and oftentimes mimic typical baby behaviors. Bending and jerking, called flexion, are displayed in the extremities or even the neck and trunk... and often occur in clusters, which become unbearable to watch as a parent. The appearance of hypsarrhythmia, essential complete chaos of brain activity, on an electroencephalogram (EEG) confirms diagnosis and distinguishes IS from other epileptic conditions.
70% of IS cases are treated symptomatically, by narrowing in on the causing factors, while the other 30% are cryptogenic without an obvious cause. The children with the latter prognosis have the best outcome with treatment, since there are no detectable brain or central nervous system abnormalities.
*the previous information was obtained from a specialized web site created by the Child Neurology Foundation in honor of IS Awareness Week: Understanding IS. You can learn more by watching the Understanding Infantile Spasms Video, just click the title link.
In honor of this week being Infantile Spasm Awareness week, our friends at Exceptional Family TV shared this video full of information on this uncommon epilepsy syndrome. The Charlans, founders of EFTV, have a son named Zak who endured IS. Click HERE for the video.