My 14 year old daughter has Dandy-Walker Syndrome. She has done remarkably well. She is functions normally and has IQ of 114. At age 10 she started having shunt malfunctions, one or two a year. Her NS decided to change her shunt to a Medtronic in May '09. She felt better than she had in years. In October '09 she came home from school with a headache and hasn't gone away unless she is completely flat for several hours. We've tried 3 antisiphon valves, countless ICP monitoring, new strata valves, a couple of paths that led nowhere. She has gotten better. She can now be upright for up to two hours before the pain is unbearable. Does this sound familar to anyone? We are desperate for help.
Thanks