punbasedname

Not OP, but I have a child with hydrocephalus. She actually has it as a symptom of spina bifida, so we have a little more going on with her, but if you're looking for support, my wife and I have met a ton of people and gotten lots of great advice through various Facebook groups. It's definitely helped us both to feel a little less alone with the condition (my wife actually meets up for drinks with other moms from our local SB group once a month.)

The other advice (or encouragement) that I'd give to you is that my wife and I were both scared and overwhelmed when we first learned what we'd be dealing with. My daughter is 3 now, and it's amazing how easily our family has adjusted to something a little outside of the normal parenting experience. 90% of the time, I honestly don't think of her condition outside of just being my 3 year old kid.

I know this advice was (kind of) unsolicited, but I think it's important to support other parents whose journey is going to be a little outside the norm!

Edit: apparently my auto correct does not recognize "spina bifida."

Thank you for doing this; my three year old daughter has hydrocephalus due to spina bifida. We did ETV surgery last summer and she seems stable at the moment. What advice would you give myself or my wife as a parent of a child with hydrocephalus? Obviously we're always worried about complications, but is there any day-to-day advice you'd give? Thanks again!

Edit: In my excitement to get this out, I just realized that this question has basically at least been asked. So, I guess I would ask -- what advice would you give to my daughter as she gets closer to elementary-school aged?

Thanks for the reply! As of now she does not have a shunt and her vents are within normal levels. One of our big fears is that she may have spinal tethering as she grows, and the surgery to correct that often causes hydro to come back/worsen, so we're never really out of the woods as far as a shunt is concerned.

Definitely appreciate the "you are not your diagnosis" advice. She's been in daycare since since she was 6 months old. She knows she's a little different, but we've gotten lucky and she's had very supportive teachers and peers. She's moving to a pre-school setting in a week, and we're a little worried about the adjustment. I know she'll probably be fine, but, as a parent, a can't help but be a little nervous! How did you handle your peers' interest in your condition as you were growing up? Did most of them know about it?

Edit: "does not" not "doesn't not!"