Has anyone been through anything even remotely like this? I am alternating between feeling at peace that we have an excellent neurologist on the case, and scared to death that my son was temporarily paralyzed two weeks ago and we still don't know why. I guess I'm looking for ideas, encouragement, anything!
In summary, here's what happened. It was three days before my little boy's 3rd birthday. My sister-in-law babysat him while I took two of our other kids out. He took his usual long afternoon nap. I got home and my SIL said he had been awake for about 30 minutes. She had fed him dinner. I saw him play and talk normally a couple minutes. He laid down on a pillow for a second, then stood up to walk to me. He kept falling over to the right. I stood him back up. He fell again. We wondered if his foot was asleep, so I decided to change his diaper and at the same time check him over for maybe a too-tight pantleg or anything unusual. As I lifted his legs to pull on the fresh diaper, his right leg flopped to the floor like dead weight. I tried his other arms and legs. The right arm did the same. In a matter of minutes, he became more and more floppy and leaning toward the right. I decided to rush him to the emergency room. As I carried him to the car, I noticed he was hard to hold onto, like an infant, because his torso was floppy and then his neck. I kept talking to him all the way to the hospital and encouraging him to respond. He did, and I could understand his words although he was beginning to act tired and his right eye started to squint.
My husband met me at the rural hospital, where our son flopped completely toward the right, slurred words and started drooling pools of saliva out his mouth as the doctor said he thought he was having a stroke. The right side of his body was paralyzed. I stayed back to talk to the doctor while my husband carried him down for a CT scan. As soon as my husband and the technician tried to hold him down for the scan, he kicked! With both legs! Slowly, he regained his feeling and movement on the right side. In all, he was totally paralyzed on the right side for about an hour, with about three hours of partial paralysis as he came in and out of the episode.
Although movement was returning, we were rushed by ambulance 2 hours away to a children's hospital. I heard the rural ER doctor call ahead and say he thought it was a TIA (mini-stroke). The ER doctor at the children's hospital had the CT scan read, it was normal, and she surmised that he had a seizure and an aftereffect called Todd's paralysis. There was no immediate danger, tests couldn't be run right away anyway and beds were full so we'd have to sleep in the ER, so we were offered the choice of being admitted or going home for outpatient treatment with our own neurologist. We went home.
Later in the week, after an EEG, our neurologist said he has abnormal, sharp brain waves on the left, but not the type that lead to seizures. (We adopted our son through foster care, he has Fetal Alcohol Syndrome, mild cerebral palsy, PDD-NOS, cognitive challenge, microcephaly and some other pre-birth trauma that makes it no surprise that he'd have abnormal brain activity.) She said the other possibility was TIA (mini-stroke), but that she didn't know why a 3-year-old would have a stroke.
We are scheduled for a sedated MRI on April 4 to learn more, as well as bloodwork to determine how his body metabolizes energy to see if he's at risk of stroke. She put him on anti-seizure medication and wants to keep him on it for two years and then recheck. She's basically treating both the stroke and seizure possibilities aggressively as we try to figure this out.
She specifically said she doesn't think it's a tumor. I'm not sure how she'd know. Would the CT scan have told her that? Should I be worried that he has a tumor?
How do we get through the next week and a half until we have more answers?