I have a 3 year old boy with Dandy Walker Syndrom

Dandy Walker Syndrome
#1

He just turned three, I have been getting info, and trying to connect with people with children with the syndrom, to get advice, and help me understand it more and make some friends doing so.
I’ve read what the symptoms are of infants and toddlers are, and then read what children’s and young adult and older are. Not really understanding if my child will have these symptoms when he gets older or not.
Along with the Dandy Walker Syndrom he has the hydrsephalis, and some brain damage on the left side of his brain.
I could really use a friend to connect with on this.

Thank you,
Bubbasmommy

#2

Your name made me chuckle, we call our oldest son Bubba.I have a 16 mo. old daughter with a Dandy-Walker malformation and hydrocephalus. She has a VA shunt (goes to the heart instead of the stomach). She is doing amazingly well! Looking up Dandy-Walker (on the internet especially) may scare the crap out of you, it sure did me. The range of outcomes is so wide there’s no way to know what’s going to happen. I expected the worst and got close to the best with my daughter. You just have to wait and see for the most part. Some cases turn out really bad and some are very mild. Some people have grown to adulthood without even knowing they had it until they were adults!Just enjoy your child, that’s the best you can do, and leave the rest up to God. You can’t change anything yourself, that’s not up to us. Give it all to God and be amazed! I’m always around if you need to chat, talk, or scream :slight_smile: