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Lorianna had her first seizure a few days before she turned 3 years old.  At the time we had no clue what was going on.  She was sitting and eating and all of a sudden, just stopped, the chicken nugget she was eating fell from her hand and she was completely unresponsive.  At the time, I thought she was dead.  It was a very scary feeling.  I didn’t even know that seizures could happen that way.  We called 911 and got her to the  hospital and they said it was a febrile seizure and she would probably never have another one.  They advised us to follow up with a neurologist so we called the neurology number they gave us.

In a seizure while in school.

We met with the neurologist who informed us that she had likely been having seizures before the first one that we saw.  No testing or anything, just diagnosed her with benign rolandic epilepsy and put her on medication.  I was not very happy about that and started talking to my friends about what I should do.  Someone who I went to school with told me about Cincinnati Children’s Hospital, which is listed as one of the best in the nation.  So I called them and made an appointment.

Second Opinion

The appointment I had at Cincinnati Children’s was so different to the first appointment I had, that I compare them to night and day.  I had a whole team come and talk to me.  They talked to us, set her up for an EEG, we met with a geneticist, a neuropsychologist and discussed everything that I had been told and seen since the first appointment.  They promised that they would get answers for us and treated us like we were the most important people in the building.  I left feeling so much better about everything after that appointment.  However, we would soon learn that diagnosing and treating her epilepsy was not so simple.

Lorianna had to have a number of EEG’s before the neurologist was able to see some seizures.  Lorianna would have seizures at home, but as soon as she was hooked up to the EEG, nothing at all.  I’m told each time that this is normal.  After all it can take hours after a seizure to get admitted, into a room, and hooked up.  However, they were able to get good information from all the EEG’s that they did on Lorianna.  I was never sure what they meant by good information, but it was said each time.

This was her EEG from 2015.

So we kept trying to get seizures on the EEG’s.  After the EEGs, the diagnosis would change.  Her seizures never fit in the BRE (Benign Rolandic Epilepsy) so it was changed from BRE to Atypical Benign Epilepsy of Childhood. After another EEG, her diagnosis was changed to Generalized Epilepsy with Focal Features.  Then in 2015, they changed it again, this time to Intractable Epilepsy when the determination was made after multiple medications were tried (8 total) that she was medication resistant.  Then another option was thrown on the table.  Surgery.  I was introduced to the idea of the Vagus Nerve Stimulator (VNS). My thoughts at this point were, is this really so bad that surgery is necessary? Find out here.

Lorianna had multiple EEG’s in 2017