Hi,

Welcome to NeuroTalk.

Do you know what symptoms to look for? Headaches are just one. Poor coordination, vision issues, and others can also be concerning. Has your son had an MRI or a CT? MRIs show more info, might show a specific cause, which might point to issues (chiari, dandy walker, etc). Have your son’s eyes been examined by an ophthalmologist who ideally has more training in neuro issues? If there is papilledema, that would show unacceptable high pressures. Note that untreated high pressures can cause vision loss or blindness. Are they going to check his pressures with a lumbar puncture (quick but potentially less accurate) or actually do a longer lasting form of icp monitoring? Doing an LP while taking a larger sample is what they do for older normal pressure hydrocephalus patients to see if there is symptom improvement. There are good and concerning issues with any tests. Do not be afraid to ask questions.

Arrested hydrocephalus does not mean it won’t become a dangerous situation. That situation could change. It’s nearly like people who already have shunts, shunts can fail at any point, for some patients they fail without obvious symptoms (hence the more thorough eye exams, more frequent imaging, and so forth). Are you working with an experienced pediatric neurosurgeon?

FWIW I’m a parent of a 10yo with congenital hydrocephalus, diagnosed in first few months of life, first shunted just before 8months of age, with 5 surgical revisions since then, at least 30 CTs, ~10 MRIs (try to avoid those as the valves we‘ve found work best have a track record of not working after many MRIs), coutless reprogramming as the pressures have changed so much over the years (that part really has been hard, the right pressure shifts over time, such that we’ve been dealing with over draining then reprogramming for over 6 years now).

Avoiding a shunt if possible is best but that just doesn’t work for everyone. Congenital hydrocephalus is essentially communicating hydrocephalus where the obstruction isn’t between the ventricles but likely in another part of the system, isn’t from some obvious damage like a premie IVH. All hydrocephalus is essentially obstructive, it’s just a matter of where the obstruction is. The old terms of communicating and obstructive hydrocephalus seem to be used less nowadays.