Just 4
good days of Vera back to her normal self and we’re back with her in the
hospital.
She has
started having the 'Episodes' again: Eyes looking to the corner, hand jerks,
stiff legs.
Consistently
once a day, each lasting for up to 1 and a half hours.
This
time round, the EEG was put on her for a longer period, and managed to capture
an Episode.
I am
calling it an ‘Episode’, because, as it turns out, what we are seeing above turns out not to be fits. No seizure activity shows up on the EEG when she was having the Episode.
So what
is it then?
The senior
neurologist’s take is that this is a development of her Trisomy 18 brain. Making
her lose some control, or altering some of her ‘regular’ movements. This may become her 'new normal'.
The good
news is that, since it is not seizures, we need not panic each time it occurs.
This takes a great weight off our shoulders. (If it were seizures, we have to
give medication in 5 minutes, or there will be some brain damage.)
The good
news is also that the EEG shows that it is not spasms.
However,
it is clear that her EEG is not normal – which is totally expected due to
Trisomy 18. There is evidence of seizure-triggering activity, which means she
is highly prone to having seizures. She will be on anti-epileptic medication
Epilim for a minimum of 2 years.
Daen’s Arthritis
Meanwhile,
the swell on Daen’s ankles have subsided, I would say by 70%. It remains to be
seen if it will go away completely. He still walks with a visible limp.
Daen is
also getting well acquainted with hospitals. He looks forward to going to “chea
chea Vera’s hospital” NUH, and knows his hospital is KK.
The pronunciation
bee can, at 2 and a half, say the word ‘Rheumalogist’ & 'Photosynthesis'. Perhaps a career in
medicine or botany (think long big words) may be suitable for him.
1 comments:
As I sit here and read your entry I am bout to call for Aannabel a neurology appointment. The nurse are seeing things daily that indicate seizures or seizure activity. I am too see areas of concern. May do you have video of what she is doing? I kmow you can't capture an hour and a half but thought maybe just a little bit. Your life has taken such a drastic turn and my prayers are with you for strength.
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