Hello Cathy and welcome to NeuroTalk.

I'm so sorry to hear that you're going through this with your son. It's ever so scary when loved ones go thorough something like this, let alone one of our children. Us mother's would always take these conditions onboard and have the operations ourselves, if only we could spare our children. What a shame it doesn't work like that.

I've given you a couple of links here where I hope you'll get advice and the support that you will obviously need.

Here's the link to our Hyrocephalic Forum : http://neurotalk.psychcentral.com/forum14.html

This one is to our Rare Disorders Forum: http://neurotalk.psychcentral.com/forum2.html

Try those, but let us know if we can help in any other way. Hugs to your little man.....