Our sweet Olivia had her first noticeable possible seizure activity on May 19th 2025 at just 5 months old. We called the pediatrician the same day and they said it could be a seizure based on the symptoms and family history.
Since then she has had more and an ER trip where they consulted Riley neurology. At the ER was when we learned the likelihood that she has infantile spasms aka West Syndrome which is a form of epilepsy. The ER got us a referral to Riley and she will be seen July 9th (their current earliest appointment) They advised trying to catch the activities on video to have a more accurate diagnosis.
However, with these types of seizures they tend to happen waking from sleep (the ones we have caught was during naps on us or when waking for feeding) and very quickly which makes it difficult to grab a phone and record. Especially when you are trying to comfort your baby.
The best option is a Sami seizure recorder. The problem is insurance wont cover (if at all, very difficult to get insurance to pay) until after diagnosis but we need this to help get diagnosed. If insurance will pay anything, it is only a reimbursement meaning we have to pay up front and frankly we do not have the means to do that. Along with the fact any time off we take for our sweet girl will be unpaid due to me starting a new job and not being eligible for pto yet (I’m a RBT working with children diagnosed with autism spectrum disorders) and my husband currently not having any pto.
The full package set up is $1375 as we are Android users and would have to get the package that includes the apple device. If someone had an iPad (requires ios 15+) to gift, we could go down to a lower package which is still over $700.
Any money over the device cost would go towards covering days off and other medical expenses not covered by insurance. We are hoping to get the device asap so we have footage for her appointment and in the off chance something opens up sooner.
