New here....daughter showing unusual signs

Her Mama

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Where to start......my daughter had her first febrile seizure on her first birthday. Between the ages of 1-2 yrs, she had a total of 9 febrile seizures. All her EEGs and MRIs were normal. Now she just turned 5 and We seemed to be out of the woods but about a month ago, I noticed her having what I thought was a tic, kind of squeezing her hands here and there. This past week, I really started to pay attention and she has these repetitive jerk movements predominantly in her left arms. Like she tenses up and her left arm/shoulder jerks. It can be very mild/hardly noticeable to her left arm literally flinging up. Every day it has been getting progressively bad. The unusual thing is that it is constant, every 30seconds-minute all day. It seems to be mild when she concentrates on an activity and when she sleeps it is much better, but is noticeable when she starts stirring to change positions,etc. We have her ped. Neurologist appt this week. After researching online, it looks like myoclonic jerks but I can’t seem to find any instances of constant repetitiveness all day. She is completely aware and conscious the whole time and does not “blank out” like a typical absence seizure. She says she can feel them but cannot control them. Does anybody have any experience with this? I am thinking juvenile myoclonic episodes but don’t these happen in isolated seizures, not constant repetitive behavior?
 

Nakamova

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Hey HM, welcome to CWE!

Partial seizures (also called focal onset seizures) can feature motor symptoms along those lines, but also benign myoclonus. Infantile spasms or tics can have a lot of different causes, so probably best to let the neuro narrow down the diagnosis through testing. If you haven't already, you should film your daughter's episodes so the neuro can see what's happening.

Hugs to you -- it's not easy to be a parent of a child with possible health issues. You're doing everything right, and the neuro appointment should hopefully bring answers.
 
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