My daughter is 17 and a survivor of twin-twin transfusion syndrome, born at 27 weeks. She was the donor twin (her sister survived as well). She has had a healthy life after the initial start requiring over 4 months in NICU. Some learning disabilities, but a healthy, happy girl.
She began having rare seizures about 18 mos ago. She has had 8, and in 4 of them, she was wearing a seatbelt and it was tight across her neck. She would come right out of the seizure as soon as she was laid down and had complete memory up to the moment of seizure along with alertness and wakefulness afterward---not typical seizure response. She remained upright during one seizure and went blue, then gray. Only after I pulled her from the car and lay her on the ground did she start breathing again and the color returned to her face. She often reports headaches after seizures, but not always. She describes a dizzyness just before having the seizure and, we believe, has warded several off by lying down. If she lays on her stomach, with her head twisted to the side, the seizure seems to keep going longer than if she lies on her back or side.
Three weeks ago she had another (no seatbelt that time), and since then has has dizzyness and feeling faint very often when sitting or standing. When lying down, she is fine. We took her to ER two weeks ago and they did MRI, EEG, and Echocardiogram. All were basically normal. They wanted to do an MRA, but couldn't because she is wearing braces. They found that when she sat or stood, her blood pressure dropped and her heart rate went up so they treated her for dehydration and kept her overnight at the hospital. (after 3-4 bags of fluid IV's, she still had dizzyness and near fainting when leaving the hospital. A pediatric neurologist felt the issue was cardiovascular and assigned her a 30-day heart monitor that she wears and makes recordings whenever she feels dizzy. But she is spending 90 % of her day lying down.
Thank you.