Guest guest Posted March 20, 2005 Report Share Posted March 20, 2005 Dear Mito Families: Please know I am praying for so many going through difficult times. Please share your experiences with us regarding tics, abnormal eye/body movements. Our, Ben (9 on the 28th and has mito) has been suffering for 4 months now with what has been diagnosed as severe tics. His eyes flip up to the side rapidly (he has seizures, too, but these are not seizure activity, according to the EEG which was conducted while these were occurring). They may do this 30 times a minute, sometimes more sometimes less. Then he added facial and neck movements, then shoulder and back jerks, then now has added a grunting/clearing throat noise. He has had an MRI (although only large masses could be ruled out due to movement and blurriness of the MRI). We have tried Keppra and then Tetrabenazine, all without assistance. The movements tend to wax and wane (like tics do) but are so extremely severe today. Please share your experiences with tics and/or anything else that the docs could be missing. My little boy seems to be taken over by these dog-gone movements and it is heart breaking. Cindy Cruz (mom to Seth and Ben, both mito) Quote Link to comment Share on other sites More sharing options...
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