Hi everyone. I apologize if this is the wrong sub for this, as my son doesn't actually have an epilepsy diagnosis. But I'm overtired from keeping him up all night for his sleep-deprived EEG this morning and frustrated so here I am.
My son (10m) has been having what he calls 'resets.' They mostly occur when he stands up and stretches. He sees colors and patterns, he can't move for a moment, and his body goes limp, but he's aware they're happening and he can still hear. They last no more than a couple seconds. He very occasionally falls down when he has one and on one notable occasion he wet his pants.
His PCP thought it sounded like absent seizures so she set him up with a referral to the pediatric neurologist. She was less convinced it was absent seizures, since he's still aware when they're happening, but didn't have any other ideas except maybe a vagus nerve issue. She did an EKG in office during that appointment (which I never received any results for now that I'm thinking about it) and ordered a sleep-deprived EEG.
He had that this morning. I had asked my husband (who my son wanted to bring him to the appointment) to ask whoever was administering the test to allow him to stand up and stretch with the cap on to see if he could trigger an episode and get it on the record. That didn't happen, and my son told me he didn't have any 'resets' during his test.
So now I'm frustrated. I'm afraid they didn't catch what they needed to and this will have been a waste of time and money. Is it possible that whatever his issue is might still have been captured on the test even if he didn't have an episode? I'm also taking suggestions on what it actually sounds like is happening in my son's brain.
If you've made it this far, thank you so much for reading.