Daughter dx with epilepsy......I have so many questions

Question

My daughter is 25 yo. She had a brain tumor when she was an infant. She also has a VP shunt. As far as tumor/shunt, she's been fine for 23 years. She is physically and intellectually disabled so a bit difficult to really know what's going on with her. For the past several years she's suffered badly with migraines. We figured out her trigger so migraines have improved but she gets a lot of headaches. She was recently dx with high blood pressure so she takes meds for that and endocrine issues.

Sorry this will be long.....

About 6 months ago she was in her room and I was calling out to her to let her know dinner was ready. She did not respond so I went to her room and she was sitting on her bed and shrieking oddly to where I wasn't sure if she was screaming in pain or laughing hysterically. I was trying to communicate with her but it's like she was in a trance. Then she snapped out of it, got out of bed and was disoriented and said she was going to take a nap. I told her dinner was ready, she came down to eat then said she had a headache and went back to lay down. Asked her what that was all about with the screaming and she said she didn't know why that happened. She had a neurosurgeon appt and I mentioned it to him and he just said let him know if it happens more. About 2-3 months later she was in her room on Facetime with her friend and I hear her screaming. Run up to her room and she's standing next to her bed and I ask what happened and she said her head was hurting so she sat down. Then her friend said "I couldn't tell if you were laughing or crying". Hmm...that sounds like what happened before. I let neuro know and they ordered an EEG. We haven't gotten it yet. A few days ago she was walking into a building and kept stopping and looking down. She uses a walker so assumed issue with that. I hurry over to her and she's screaming and holding her head saying she has a bad headache. This episode only lasted less than 5 minutes and suddenly fine. We went home and she had a dull headache for a bit then fine. Thinking it was a migraine. Next day she's in her room and screaming. Run up there and she's sitting on floor, eyes rolled back, unresponsive, screaming, urinated, hands clenched, screaming. Snaps out of it and then uncontrollable laughing. We head to ER where she gets admitted. CT is fine, she's just had an MRI in August so they don't feel they need to repeat, blood is fine, EEG is fine. They start Keppra. Neuro said these 4 incidents were all seizures. Mostly saying this last one is and sounds like the others were too. Sent home on Keppra and diagnosis of epilepsy but really not much more info than that. Follow up with neurosurgeon and see if he wants her to see epilepsy doctor. I have no idea what I do if she has another episode. One hospital dr said we just get through it, other said go to ER. They don't have definite answer why this is happening. Just chalking it up to scar tissue from brain surgeries 25 years ago. I left hospital with more questions than answers and feeling like I'll learn more from Reddit than the doctors there.

Any info? Advice? Appreciate any insight anyone can give.

Posted Oct 30, 2025, 4:00 PM UTC

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