Monitoring night seizures

Mom
sounds like a challenge with the group home, not for sure how to comply with local regulations. we've used one of our wireless Ring cameras that monitors in real time and is motion activated showing markers of activity in the portal.
it can be mounted to the wall or sit on a desk top. Battery will last a couple of weeks unless you power with a USB type C adapter. Good luck

Hi Lisa's mom,
I know how difficult the group home rules can be and how the state dictates all the guidelines. Have you spoken to the staff and asked for suggestions? Sometimes, the providers know of somebody in similar situations that might help. If you can't get help from the providers, maybe talk to the state? I'm not sure about California guidelines. Also, if you have a neurologist or epitleptologist, I would get their input as well. I wish I could be of more help.
Good luck and keep us posted!
Kerry, Keegan's mom.

Thank you, yes neurologist did suggest couple things, but again, I have to go above carehome owner to get permission, especially when night staff insists Lisa isn't having seizures, just her daytime post ictal symptoms seem to say otherwise
Always battles but I persist, think moving her to a medical care home will have to happen one day.. now it's a "behavioral" home tho 3 ladies have epilepsy
Thank you for your reply!

Hi Lisa's mom,
I'm glad you have a neurologist on your side. One thing I mentioned here before is you can ask your neurologist to order an ambulatory EEG. This test is done over 24-72 hours and is done at home. It will record all seizure activity over that period of time, whereas a regular EEG is less than an hour long (typically) and not as accurate, in my opinion.
I am so sorry you and Lisa are going through this. It's very difficult as a parent when your kiddo is in a group home and you're at the mercy of the states guidelines. You are a wonderful advocate for Lisa. Always battle, never give up.
Kerry

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 ..

@minajo
Is having an inpatient EEG a possibility? Preferably in an epilepsy monitoring unit to differentiate between epileptic seizures, and non-epileptic seizures unless a diagnosis has already been determined. However she might remove the electrodes unless restrained.
Perhaps a sleep EEG at the group home would be possible however, again restraints may be necessary.
They do have bed seizure monitoring devices/pads to sleep on that may be beneficial if the pad could be under the sheet and monitor be placed out of sight.
Best of luck,
Jake

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