My beautiful 14 year old daughter is suffering. One year ago she came to my room at 4:00am, and said she needed to see a doctor right away (completely out of character). She expalined that she was experiencing "electrical shock" sensations causing her body to jolt. She also had a severe headache and exteme fatigue.
After MANY doctor visits, someone finally ordered an MRI showing unilateral open lipped schizencephaly. (Or "this word here that starts with an 's' ", as one of her former useless docs so elequently stated.)
Since that time I have read everything I can about schizencephaly, and have come to the conclusion that my daughters case is very unusual. She has never has any developmental delays, and prior to a year ago was active and involved and a very normal teenager. Since her first episode, however, she has continued on a downward spiral. She has been on a slew of anti-seizure meds causing their own set of issues, but is currently doing well on Keppra. She is too weak to attend school, and is even having a hard time keeping up with her on-line high school studies.
Her nuerologist seems to think that all of her symptoms are related to the schizencephlay, but I'm not sure! I can't find anyone else with the same issues. She seems to have text book MS, but her testing a year ago didn't show any spinal liesions, nor was her CSF abnormal.
Please help us! She said today that she feels as if her body is just giving up on her. Her quality of life sucks. Should I demand another MRI? One specialist thought he saw signs of a spinal cyst (syingomyalia?), but the currrent neuro doesn't agree. Could her symptoms all be due to the brain abnormality, or do you think we are missing something?
Hello my name is Alex I'm 25 and I was just diagnosed with schizencephaly as well, much like you're daughter, I have had a very normal life so far, and don't have any problems as of yet, I have staying having very bad headaches and that's why I had the MRI I never put my fatigue as a symptom but it makes since. I'm not sure about this abnormality because I just learned about it this week. But I really hope your daughter starts feeling better! Respond if you would like. I would love to hear how she's doing.
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