Well we have some answers now about Iris’s sleep stuff.
Seizures. We didn’t even get to schedule the EEG yet but we were on vacation in central WA for a couple of days and Iris had a full-blown seizure at her first waking of the night. It was very scary for us. I had witnessed a seizure that woke her a couple of weeks ago when she had Roseola and a fever- I assumed it was just a febrile seizure but this time no illness or fever. Little “focal” seizures are what we were going to attempt to test/rule out in the next week as suggested by the docs but the neurologist today she said likely they were always focal before and only manifested in apnea, waking and screaming and now have “spread” so be something more visible.
We start an anti-convulsant (mild and safe one) tonight, thanks to our amazing Pediatric Neurologist who communicates with me via email and called me on a Sunday. Her name is Lauren Plawner (at Polyclinic) should you know of anyone who might want to see her.
This is sort of my mom’s worst nightmare because she had terrifying waking seizures as a very young child and they didn’t know that they were seizures or what to do for them until they had all but gone away. She only reminded me of this a couple of weeks ago so I was able to tell the doctor and low and behold it looks genetic.
I dearly hope we have found cause and possibly treatment. I’m looking at this in a very positive light. This turn events 100 percent solidifies my uncanny mother’s intuition. In the beginning of this whole mess, when we asked the question, what’s wrong?!, my intiution said “something is different/going on with her brain. Something that might not be caught on an imaging test. Something is causing both pain and terror in her”
And the people who told us to let her cry it out alone in her crib…I know you meant the best which was to help us sleep, and I probably love you, but I just want to flip you the bird.