[deleted account] ( 2 moms have responded )
My daughter now 11 had her first seizure at 5months old. She was was diagnosed with a rare seizure disorder called Subependymal (Grey Matter) Heterotopia. She has struggled with keeping the seizures under control. We have tried almost every medication, and combination of. We have taken her to several specialists who all seem to say the same thing," we don't know much about it, or it is very hard to treat." Then they just tell us to try more meds. She takes 18 pills a day and 3 different kinds. She continues to struggle.
Does anyone else have a child with this type of Seizure disorder? If so I would love to hear what is working for you.