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← Return to Monitoring night seizures
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Epilepsy & Seizures | Last Active: Sep 18 7:00pm | Replies (7)
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Thank you I'm afraid Lisa can't do ambulatory eeg, she pulls hair clips out!
We did get a EEG in hospital only when she was really out of it, had drug induced encephalopathy, her 25 days post op was very hard, but least we got that done, now needs EKG as her pulse went to 44 in doctor's office this week( came back up after hydration) Even that will be challenging
After 49 days in hospital last year she doesn't do well for even office visits
This life of profound autism, epilepsy has been extremely hard for her, I don't say for me as I'm her mom, my love is endless ..
Replies to "Thank you I'm afraid Lisa can't do ambulatory eeg, she pulls hair clips out! We did..."
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Hi Lisa's mom,
I think Jake has a wonderful idea with the bed seizure monitoring devices that do not have to be attached to Lisa but could monitor her seizure activity during sleep. Jake and @santosha are wonderful. They were extremely helpful when I first joined, which was the day my son had his first seizure (adult onset, age 22). My son also has autism, cerebral palsy, and developed adult onset epilepsy.
I understand how hard it can be for a kiddo with autism. You are an absolute warrior and advocate for Lisa. Where there's a will, there's a way 🙂
Kerry