Thank you for posting this. We are looking for answers for our daughter. She is five years old and has been diagnosed with LGS, which is a severe form of epilepsy. In the last several months, we have seen some things in her that no one can explain and that really concern us. A lot of these symptoms look a lot like Chiari Malformation. She never has learned to talk. Sometimes her hands and feet will turn icy for days and she will eventually stop using them. During these times, she also stops eating and drinking, becomes constipated and sleeps for hours and hours every day. Even on her "good" days, she is a "noodle" and has serious balance problems.

I am curious about one thing regarding your son. You said he had some seizures that may or may not be related to his Chiari Malformation. Did you ever have an EEG record his seizures and if so, what did they look like? Bailey (our daughter) has a slow spike wave pattern consistant with LGS. We have a consultation with our neurologist on Dec 10 for a different surgery (CC) and would love to have more information on Chiari before then. Thank you,

Launa