We're still in the process of having testing done to figure out what is going on, neurologically, with Jane.
Meanwhile, there was another seizure-like incident that I got on video. I've shown it to a few friends and family members in the medical field and the suspicion is that she may actually be having catatonic episodes.
When most people hear "catatonic" they think frozen or in a coma but those are just some of the manifestations. It can also include body contortions and facial grimacing that look like a seizure. The key difference is that speaking to or touching someone in a seizure will not bring them out of it whereas it's possible to bring someone out of these kinds of catatonic episodes.
While catatonic episodes are associated with schizophrenia they can also be caused by past trauma. Given that the girls' mother has a history of mental health disorders and that we know they witnessed and experienced trauma, both causes are within the realm of possibility.
I have observed Jane having these neurological episodes twice now. Here's the context for each time.
First Observation - on vacation for a week at the family cottage
These two episodes were about five weeks apart.
The results of her one-hour EEG were normal. A few days ago she had her MRI and I'm waiting results. Those tests were already scheduled after the first event.
Now, after the second event and the similarities leading up to the events that possibly indicate catatonia rather than epilepsy, I want to have her seen by a neuropsychologist. I want to work with someone who can look at her whole body and life--both the physical structure of her brain and also the role that past trauma is playing in her life.
Incidentally, Kate has always done this thing where when she gets really mad she holds her breath till she passes out. I've seen her do it enough times, and I'm so careful that there is not one positive reinforcement that would promote this behavior for the purpose of attention-seeking, that I truly believe it is involuntary. She hates it and it scares her. She will really try to avoid it by following my coaching to take deep breaths if I can start that soon enough.
But now I see this in light of a neurological manifestation of an emotional state. Her body flips a switch and stops her breathing as the result of a strong emotion (usually fear--she does this almost solely when she's upset about me leaving).
These girls come with some powerful (and powerfully destructive) coping devices that are going to be very hard to unravel and reteach.
P.S. Bio family does not want to address Jane's episodes. Grandma has flat out said she cannot look at any videos nor does she want to hear about it. Aunt first says nope, they've never seen anything like this but then suddenly reveals that Jane has always had these moments where she'd stare blankly at nothing and drool profusely. OMG! How do you spend weeks telling me there's no history and then drop that little tidbit!?!
Meanwhile, there was another seizure-like incident that I got on video. I've shown it to a few friends and family members in the medical field and the suspicion is that she may actually be having catatonic episodes.
When most people hear "catatonic" they think frozen or in a coma but those are just some of the manifestations. It can also include body contortions and facial grimacing that look like a seizure. The key difference is that speaking to or touching someone in a seizure will not bring them out of it whereas it's possible to bring someone out of these kinds of catatonic episodes.
While catatonic episodes are associated with schizophrenia they can also be caused by past trauma. Given that the girls' mother has a history of mental health disorders and that we know they witnessed and experienced trauma, both causes are within the realm of possibility.
I have observed Jane having these neurological episodes twice now. Here's the context for each time.
First Observation - on vacation for a week at the family cottage
- non-stop activity; exhausted kids each night
- Jane had no concept of "vacation" and thought we'd moved to a new house
- asking about toys, clothing, etc. that'd been left behind
- Theo did not join us the first few days and she asked where he was
- she has no concept of time (uses phrases like "a few minutes ago" and "last year" interchangeably in her speech with no idea of their meaning) and despite my explanations for when Theo would join us or when we'd return to our home she did not really comprehend that all this disruption was temporary and not a permanent shift in her home and family life.
- intense heat wave and we have no central air so I had the kids out doing stuff in A/C locations all day long; lots more activity than usual
- Theo, Seth and Gus were all gone to summer programs
- Jane wouldn't believe they were coming back despite my assurances and attempts to use a calendar to explain time to her
- she'd just spent 4 hours in a bounce house becoming totally exhausted (I needed the kids to sleep well since I was on sole parenting duty for 3 days)
These two episodes were about five weeks apart.
The results of her one-hour EEG were normal. A few days ago she had her MRI and I'm waiting results. Those tests were already scheduled after the first event.
Now, after the second event and the similarities leading up to the events that possibly indicate catatonia rather than epilepsy, I want to have her seen by a neuropsychologist. I want to work with someone who can look at her whole body and life--both the physical structure of her brain and also the role that past trauma is playing in her life.
Incidentally, Kate has always done this thing where when she gets really mad she holds her breath till she passes out. I've seen her do it enough times, and I'm so careful that there is not one positive reinforcement that would promote this behavior for the purpose of attention-seeking, that I truly believe it is involuntary. She hates it and it scares her. She will really try to avoid it by following my coaching to take deep breaths if I can start that soon enough.
But now I see this in light of a neurological manifestation of an emotional state. Her body flips a switch and stops her breathing as the result of a strong emotion (usually fear--she does this almost solely when she's upset about me leaving).
These girls come with some powerful (and powerfully destructive) coping devices that are going to be very hard to unravel and reteach.
P.S. Bio family does not want to address Jane's episodes. Grandma has flat out said she cannot look at any videos nor does she want to hear about it. Aunt first says nope, they've never seen anything like this but then suddenly reveals that Jane has always had these moments where she'd stare blankly at nothing and drool profusely. OMG! How do you spend weeks telling me there's no history and then drop that little tidbit!?!
Comments
Post a Comment