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My daughter has grey matter heterotopia

Thu, 06/14/2018 - 02:11
She has nodules 20 or so from her occipital horn to her temporal lobes on both sides. She has seizures and is on two different seizure medications keppra and oxycarbazine. She is also blind in her right eye and has a nystagmus. She is developmentally behind and severely ADHD. Now she is having frequent nose bleeds and it's so scary. Sometimes I don't know what to do. I worry about her all the time! Any other parents go through these things it would be great to have other people who understand!

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