Periventricular Heterotopia

Liz - posted on 02/07/2016 ( no moms have responded yet )




My name is Liz Ventura I have an 11 year old boy with periventricular heterotopia. When he was born the doctors taught that he have hydrosephalia. Then at 2 month old he started having seizures. He was started in seizure mend by 2 month and a half he had more seizures and one day it was continuous seizures. He was induce to a comma to stop them but didn't happen. For a hall month he was having more than 100 seizures per day the doctor was monitoring his seizure and increase his medications till his seizure were stop. It took a month to control them. After that he was just having them once or twice a month. He started walking at the age of 7 and since he was one year old the doctors decide that he needed a feeding tube. He is small boy he is about a 5 year old kid he weights 58 pounds. Mentality he don't know. He knows me but he don't know danger. He's non verbal, have problems with blood clots, is asthmatic. I love that Boy. That's my baby. I just don't know much about this syndrome and recently move to PA and had a new neurology that when I told her about his syndrome she got me mad because instead of trying to look it up she was telling me that is not a syndrome. She even make me take my son for an MRI because she keep telling me that was not a syndrome. Thank God I got a new doctor and he told me that maybe it was a misunderstanding. I will like to know if there's places that have like research on this syndrome or any kid of way to help him be more independent I don't know or other parent with a child with the same condition.

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