Quick question … My 10-year-old has had three surgeries to treat her AVM. Lately she’s been talking about times when her head just “falls forward” and tonight says she blacked out in the tub and hit her head – several times. I have never seen these episodes she reports. But I know some seizures can be very difficult to notice until you realize what is happening.
Has anybody else felt this way or had children report things like this? Seizures or just kid stories?
I would trust her. At 10, she's old enough to know about her body and AVM.
Our son had complex partial seizures in middle school(we called them zone-out seizures). No convulsions, no falling. A lot of times, he'd suddenly turn his head like something caught his eye. That would often be our trigger that a seizure started. Sometimes he would repeat a word such as "nothing, nothing".
They were SO SUBTLE! We knew what to watch for, and he had one at a restaurant. The people we were eating with didn't even notice. Our daughter leaned over to whisper to me "Allen's having a seizure". Sure enough...........
His were infrequent (about every three wks), so it made it even harder to notice. Since he never lost consciousness, we didn't know how much he was "out". We started trying a code word--when he'd zone out, we'd say Apple, Apple, Apple. Then a few minutes later when he came back, we'd ask for the code word--he never recalled it.
He was always disoriented as he came back. If we were driving, I'd say "Where were we going?" or "Which store did we just leave?" A lot of times, he wouldn't know.
I wouldn't worry too much about it, but if she thinks she's having these, she probably is. I would ask her to tell you each time it happens, and you can chart the occurrence to look for patterns: Always in the evening (tired?), always after meals, before that time, etc.
I would trust her! I have that "fall forward" feeling, I know exactly what she's talking about but my Dr. cannot diagnos because they happen quickly, randomly and seemingly without any other signs other than zoning out. Sometimes I get the same feeling like a "push" from the back of my head. Not all seizures or "episodes" are easily recognized or noticeable. I would definitely trust her.