Tuesday, June 15, 2004


Amelia's Symptoms

This page documents Amelia's symptoms from OMS.

Symptom description table

Date Opsoclonus Myoclonus Symptoms
Late 2003 - early 2004 A lot of baby talk. Unusual dislike of going preschool (but happy when she was there).
Early May 2004 Daily tantrums about trivial problems. Waking up a night very distresses every few nights. Intense resistance to going to preschool and refusal to work with other children while there. All speach was in 'Baby talk'
Mid May 2004 Onset of hand tremors. Clumsiness such that she was falling over once or twice a day. Could not walk in a straight line. At least one tantrum each day. The hand tremor made it almost impossible to use cutlery.
Hospital May 26th to July 8th All symptoms were a bit worse except the tantrums stopped. Speach changed from baby talk to normal sentences delivered very slowly. Ennuciation was bad and there was some mumbling.
Bone biopsy July 8th Probably the worst day for the OMS. Nil by mouth until the general anesthetic a 14:00, which made everything worse. Went to theatre screaming and came out screaming. The screaming and tantrums continued for two hours after she woke up. Tantrums continued almost non stop into that night and most of the the next day. My fear that this behaviour was going to be long term made this one of the worst times of all, but I suspect it was bad reaction to the sedation.
At home June 8th to 15th The hand tremor has reduced greatly. Hands are almost normal with just a bit of gross tremor sometimes. Walking is still unsteady, but walking in a straight line is usually possible. Speech seems to have improved slightly, but it is hard to tell (see attached sound files). Still having one or more tantrums daily. Had to let her cry herself to sleep on the first three nights that we go home, but the following nights were normal.
At home June 16th to 21th In general the symptoms seem to be fairly stable. Tantrums and irrirability are probably the biggest issues at the moment, with a least one or two daily outbreaks. Overall Amelia seems a bit withdrawn and uninspired. I took back to preschool for a couple of hours last week, but she didn't seem very happy. She held my hand most of the time and didn't want to interact with her friends.

Sound Files

Some recordings have been made of Amelia talking. These recordings have been made as a record which may help speach therapy and also to measure any changes.


Amelia has made a series of drawings of cirles, squares and spirals since early June. These pictures have been made at the request of Dr. Grattan Smith in an attempt to measure changes in Amelia's condition. Digital scans to be completed.....

Video Files

A number of videos have been made of Amelia by Kara and I as well as Dr. Grattan Smith. None of these videos have been digitized yet. To be completed....


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