Call from School

Today, around lunch time I received a call from my daughter's school. Both Kylie's first and second block teachers had called the nurse to say Kylie was experiencing the "Eye fluttering" and did not look well. Finally, Kylie's math teacher walked her down to the nurse because her symptoms became increasingly more severe. I appreciate her math teacher so much for getting her to the nurse. When I made it to the school Kylie was laying down and very much out of it. I waited a bit and asked her if she wanted to go home and she said yes. Kylie hates to go home because she loves school.


Kylie has a nasal spray that I can give her to stop the "Eye Fluttering" and pre-seizure symptoms. The medication is called Nasal  Midazolam. The drug is actually used to sedate people before surgeries.

The only FDA-approved treatment for acute repetitive seizures must be given rectally (very embarrassing for a middle schooler), but nasal midazolam has been shown to be at least as effective but is still in FDA trials. Since the medication is not yet approved for seizure treatment Kylie can not be given this medication at school. As I write this blog my daughter is still a sleep from the time I administered the medication.

Sleep seems to be the only thing that puts her body back on track. So as I write this blog, I sit here and watch my Sleeping Beauty get the rest she needs.

Our Mornings Sometimes

There are days when I will not send Kylie to school. Kylie often has myclonic seizures in the mornings. Kylie has a wonderful Pediatric Neurologist, Dr. Harley Morgan. Dr. Morgan asks us to record her seizure activity when her symptoms are more persistent. The eye flutter Kylie experiences is a warning that a grand mal seizure may occur.  I share this video for others to understand that Epilepsy is not just Tonic-clonic seizures (formerly known as grand mal seizures) . Kylie's first grand mal seizure was at school and her second one was at home.

When Kylie is experiencing these symptoms at school or at home she is in a different state of consciousness until we can control the breakthrough seizures.

https://youtu.be/KSiiEtIssng

Testing Days

Standardized Testing Days

My daughter who does have the accommodation to be late in the morning is still scheduled for testing at 8:30 am. We had a hard morning. Tiredness is one of her triggers. So of course I can see she is not ready to test. The front office lady tells me she looks pale. I know this but thank her for her concern and send her off to testing.

I am thankful I understand my role as an advocate for her.

A Little about Me

Hello, on this blog I plan to post information resources, studies and tips on helping my daughter to manage her Epilepsy.

My daughter was diagnosed officially on January 1, 2016 with Juvenile Absence Epilepsy ( Jeavons Syndrome)  http://www.epilepsy.com/information/professionals/about-epilepsy-seizures/reflex-seizures-and-related-epileptic-syndromes-4.

This has been a scary and often difficult to grasp disability. I am learning, failing and succeeding. I will always be here for my daughter and hope one day a cure is found.