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Phoenix Update

We think we have an idea as to what’s going on with Phoenix. Since she was an infant, she 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 several times a night (sometimes 7-8 instances). It wasn’t until she began having these episodes of very clear seizure activity in February, that I started to think her behavior at night wasn’t simply night terrors or tantrums. After Phoenix’s normal simple eeg last week, a follower who’s friend is a pediatric neurologist in Germany, messaged me with a link that ended up being incredibly helpful. We have since done a LOT of research and believe this is what is called SHE. With SHE (Sleep-related Hypermotor Epilepsy) also called Nocturnal Frontal Lobe Epilepsy, seizures occur/are brought on during sleep. Aggressive/violent movements of the arms and legs, startle behaviors, or screaming/crying may happen. The episodes are frequent, brief, and can happen several times during the night. They can last a few seconds to a few minutes, and can cause a feeling of not being able to catch a breath. SHE is lifelong but is well managed with meds and can become less frequent with age. P fits EVERY symptom. The problem is that SHE is hard to diagnose as it looks very similar to night terrors and other sleep disorders. It typically requires an overnight eeg to diagnose but can still be missed. I’ve put in a call to switch neurologists but 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 the possibility of this MAYBE being an answer is somewhat relieving.

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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