When Violet was a lot younger, she would have these strange episodes in her highchair during mealtimes. They would involve extensions and her limbs locking into extended positions. Head would turn to one side and lock there. Eyes would roll back into her head.
When we raised this repeatedly with paediatricians we were told it was a positioning thing. We knew it was more than that yet no one would listen.
When we saw the neurologist at the Evelina, he put these down to Paroxysmal Dystonic episodes:
Paroxysmal dystonias are a group of rare dystonias which are short, episodic periods of dystonic movements which are only visible during attacks. Between attacks there are usually no other visible symptoms.
It is rare for Violet to have these now that we have better seating etc in place. We are also more aware of her Dystonia and her “usual” Dystonic movements which include extending, posturing and locking of limbs.
Since January this year, Violet has suffered four seizures. All slightly different in their appearance and are increasingly becoming longer.
Jan 2017 – Eyes rolled back, loss of consciousness for 5 secs, extreme distress when conscious, arms and legs completely relaxed and floppy, this repeated on and off for 10 minutes.
Sept 2017 – Eyes rolled back, lost consciousness and head jerked to the right repeatedly, lasted approx 10 seconds, very distressed when conscious
Oct 2017 – Eyes rolled back, lost consciousness, arms and legs floppy and lost head control, unable to rouse, lasted 3 minutes, very, distressed when conscious, left arm and leg floppy and was not normal for 1.5hrs after seizure
Dec 2017 – Eyes rolled back, lost consciousness, grey in colour, arms and legs floppy, lost head control, unable to rouse, lasted 12 minutes, only roused by oxygen mask provided by paramedics, very distressed on waking, very subdued limb movements for 2-3 hrs after seizure
These are classed as absence “petit mal” seizures. These shouldn’t last more than 30 secs, yet Violet is having ever increasingly long episodes. It’s worrying to say the least. It’s awful to see your precious little one so terrified when she comes to. Heart breaking.
Two EEGs have come back normal. But that’s expected, it’s hard to capture seizure activity on these tests unless they have a seizure then and there. So the results are neither here nor there. Violets paediatrician wants to start anticonvulsant drugs as we have reached a point of three hospital admissions due to seizure activity. No diagnosis of epilepsy but we are starting epilepsy drugs.