NeuroTalk Support Groups - New/ Daughter with hydrocephalus/dandy walker

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New/ Daughter with hydrocephalus/dandy walker

Hello, I'm the mother of a daughter who is a month away from 22 years of age. She was born with hydrocephalus caused by a dandy walker malformation. She also has Klippel–Feil syndrome, (fused vertebrae in her neck). She also had a small cleft palate at birth, which was repaired. She has scoliosis of her spine.

She had a vp shunt inserted the day of her birth, (her head was huge with a large cyst in the back). She has been very blessed in that she has only had two shunt revisions. Her last shunt is now 11 years old. She has a severe hearing loss in one ear, profound in the other. She is developmentally much like a baby. She is unable to walk but she can sit and she can scoot around. She is happy most of the time, but has suffered from a lot of ear issues and does have chronic constipation which causes her considerable pain.

She does not talk and I have often wondered if her shunt causes her problems that she can not communicate.

I'm interested in talking with others and sharing who have similar circumstances.

Nice to meet you!!

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bb28,

:Wave-Hello: It is great to have you come and be with us. You will fine a great number of dear friends to listen when you are in need of ears. Please, just let us know how we can help you out. You will find out we are supportive and relaxing place.

Please keep us up to date on your condition. Again welcome, looking forward to seeing you around. My thoughts and prayers are with you.:smileypray:

bb,

Welcome to Neurotalk. This is a wonderful place to meet similiar friends who are going through (or gone through) the same things that you are going through.

Below is a link to the hydrocephalas forum:

http://neurotalk.psychcentral.com/fo...aysprune=&f=14.

Please feel free to post your questions, answer others. This is how we learn. One to another.