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Phoenix Update

Since she was an infant, Phoenix has been what we thought was a “terrible sleeper”. Constant wakings that always involved screaming/crying and breathing spells, moving and jerking around frequently, even disorientation. I attributed it to normal kid stuff, thinking she’d grow out of it. She’s two next month, and she is still waking an excessive amount of times a night (sometimes 10+ instances).

It wasn’t until she began having these episodes of what appeared to be seizure activity in February, that I started to think her behavior at night wasn’t simply night terrors or tantrums and could possibly be an actual disorder. A few followers messaged with some ideas as to what could be causing all of this, and we have since been doing a lot of research on her symptoms in correlation with various sleep and seizure disorders.

Because the first neuro we saw for the seizure activity all but blew us off, I’ve put in a call to switch neurologists, preferably to someone specializing in sleep related issues. Unfortunately as I mentioned before, the COVID pandemic has delayed everything so right now it’s a waiting game. Of course we still hope this is all nothing and she’ll grow out of it, but possibly tying this to her sleep issues gives us something to ask about at the very least!

At her EEG a few weeks ago
Here’s an example of one of her episodes (not to be confused with the bigger generalized seizures she’s also had) . These episodes of jerking/contorting and crying, happen several times a night, sometimes 5-8 different instances. She doesn’t seem to have any control over her body when they happen, and usually screams or cries out, and has occasionally thrown up after. This has gone on since she was an infant.

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