Hydrocephalus

2lovelyboys

Hello.  I just found out my 7 year old has hydrocephalus.  I'm devasted as the neurologist said he most likely had it for years and nobody picked up on it.  Not even the first neuro I went to and he does have delays since he was 2!  Im seeing a neurosurgeon next week.  Any experience with your child and finding out later.  I'm so scared that the brain damage is done.  I'm beating myself up too.  Sorry for typos.

honeyloveca

My son is 8 years old with acquired hydrocephalus when he was born premature.  He originally had a shunt implant system to regulate the flow of cerebrospinal fluids to prevent over-draining and under-draining in his head.  He has had 4 shunt revisions total.  Just recently last year he had his 4th malfunction to his shunt....it was at that time the neurosurgeon decided to do the shuntless surgery ETV, where he would no longer need a shunt implant, but instead they make a tiny hole in the bottom of the third ventricle of the brain for the fluids to flow through.  So far, it has been 8 months and everything is currently successful.  But just like the shunt, this procedure is not guaranteed....as the body might want to heal or close the hole.  Time will only tell as he grows.  My son is non-verbal and autistic.  However, he has no physical disabilitlies.  With all the early interventions, ABA, OT and PT he has definitely made alot of progress in meeting most of his delays for his age.  I would inquire on the ETV procedure (endoscopic third ventriculostomy)  it is relatively new procedure that is becoming common for kids who need surgery.