SAMi Helps Monitor Daughter with Epilepsy.
Stephanie, A Loving Mother & Dedicated Nonprofit Worker, Shares Her Story About How A Neurologist’s Recommendation For SAMi Has Kept Her Daughter Safe From SUDEP
How did you learn about SAMi?
Stephanie: I first heard about SAMi when my daughter Jayla was finally given the diagnosis of epilepsy at 8, despite having many, many seizures starting in infancy. When I brought her to the doctor, they said "No she's fine. It's just an immature nervous system. No worries, she's fine." And I'm like "No! She’s definitely having seizures."
Stephanie: After learning of the disorder, Jayla’s neurologist discussed SUDEP and suggested SAMi based on Jayla’s symptoms. SAMi would be the best monitor for her to keep an eye on Jayla’s seizures and potentially prevent SUDEP.
How has SAMi helped your family?
Stephanie: I felt like I was just a broken record with neurologists until finally getting SAMi. Neurologists kept saying, “Well record things and show me” and I'm like, ‘How do I stay up all night and record on a baby monitor?’
Stephanie: SAMi was a critical piece in empowering my physicians and myself in watching over my little one. He said, you need to get this specific SAMi monitor because it will be the best one for her type of epilepsy, based on her movement. Once we got the monitor, we were able to transition my daughter back into her bed, and my husband back into our bed. It was great having that peace of mind and going back to a normal family routine
Stephanie’s concerns were initially brushed off by doctors. Undeterred, she pushed for genetic testing. Stephanie found out her daughter Jayla has an epilepsy linked neurodevelopmental disorder called CSNK2B. With this diagnosis, she was able to get the direction from the physicians she had hoped for but her journey was far from over.
“I Felt Like I Was A Broken Record With The Neurologist.
SAMi Was A Game Changer"
How has SAMi impacted your daily life?
Stephanie: It's been helping me to be able to push to get Jayla better treatment. Because of SAMi I told her Doctor we need to see how her medication was going. He thought about canceling it, and I said 'No', because I'm seeing so much more activity at night. I know what's going on.
Stephanie: We both sleep so much better now, knowing that we can close our eyes and go to sleep, and SAMi will let us know if there's something going on. Before SAMi we didn't really have a bedtime routine. Jayla would just start dozing off. And during that time, I would be sitting next to her. SAMi has helped all of us get better sleep, get into a solid routine and have the comfort of knowing [Jayla] is monitored.
Stephanie takes a look at the longest and shortest SAMi recordings from each night to help her stay fully aware of Jayla's small or large movements, which could be seizures. The recordings have been essential part of helping Stephanie show neurologists what is happening each night. Now, they can work together to improve Jayla's medication plan.
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See and hear exactly what's happening (and how often + how long)
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Put those video to work! Confirm whether you're headed in the right direction.
Please Note - SAMi is a nocturnal movement monitor and will detect all types of movement regardless of the movement’s origin. HiPass Design LLC does not guarantee the effectiveness of SAMi for any particular application and use of SAMi is solely at your own risk. SAMi has not been evaluated or approved by the U.S. Food and Drug Administration or any other government agency for any purpose. SAMi is not a medical device and is not intended for use in the prevention, diagnosis, mitigation, treatment, or cure of any disease or other conditions. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition.
