Guest guest Posted January 15, 2003 Report Share Posted January 15, 2003 , Cameron has hyper mobility in his joints. They can bend in strange ways and are loose. He holds his hands in strange positions and when I question this the therapist says it is usually when his brain is trying hard to tell him to do something ( like stack blocks). One hand may be trying the activity and the other will look kind of "spastic". I am the only one who really notices (they say) because to the naked eye he "looks great" Whatever. I think it is a condition that happens if you have muscular problems as part of the disease. -----Original Message----- Sent: Wednesday, January 15, 2003 12:42 PMTo: Mito Subject: quirky stuffTo all,You all were so great in responding to my query about Lily's twitching while sleeping. I passed it on to Lily's neuro, who didn't know what to make of it, but now will keep it in mind as maybe mito related in the future.So I have another question but this one might sound a little "goofy".Are any of your kids or you yourself if you have mito, capable of moving you fingers and/or toes in "unusual ways". Lily at a very young age (10-12 weeks old) could do the "Spock" thing with her fingers.Later on my oldest son pointed out to us and the neuro how she could move her toes independently. Or lift up like #2 & #4 toes-while keeping 1-3-5 down. She was none verbal so we didn't know if she was doing this consciously or sub-consciously.Sorry if this seems impertinent given the present for so many of you.Best wishes to all,Mom to Angel Lily, Red 7 AdaPlease contact mito-owner with any problems or questions. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 15, 2003 Report Share Posted January 15, 2003 , Cameron has hyper mobility in his joints. They can bend in strange ways and are loose. He holds his hands in strange positions and when I question this the therapist says it is usually when his brain is trying hard to tell him to do something ( like stack blocks). One hand may be trying the activity and the other will look kind of "spastic". I am the only one who really notices (they say) because to the naked eye he "looks great" Whatever. I think it is a condition that happens if you have muscular problems as part of the disease. -----Original Message----- Sent: Wednesday, January 15, 2003 12:42 PMTo: Mito Subject: quirky stuffTo all,You all were so great in responding to my query about Lily's twitching while sleeping. I passed it on to Lily's neuro, who didn't know what to make of it, but now will keep it in mind as maybe mito related in the future.So I have another question but this one might sound a little "goofy".Are any of your kids or you yourself if you have mito, capable of moving you fingers and/or toes in "unusual ways". Lily at a very young age (10-12 weeks old) could do the "Spock" thing with her fingers.Later on my oldest son pointed out to us and the neuro how she could move her toes independently. Or lift up like #2 & #4 toes-while keeping 1-3-5 down. She was none verbal so we didn't know if she was doing this consciously or sub-consciously.Sorry if this seems impertinent given the present for so many of you.Best wishes to all,Mom to Angel Lily, Red 7 AdaPlease contact mito-owner with any problems or questions. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 15, 2003 Report Share Posted January 15, 2003 The name of the syndrome escapes me right now ... but there was a discussion about the incidence of hypermobility in Mito in the AdultMito list a few months back! Hypermobility, it seems, is not common to ALL people with Mito who have muscle involvement. Jean R wrote: ,Cameron has hyper mobility in his joints. They can bend in strange ways and are loose. He holds his hands in strange positions and when I question this the therapist says it is usually when his brain is trying hard to tell him to do something ( like stack blocks). One hand may be trying the activity and the other will look kind of "spastic". I am the only one who really notices (they say) because to the naked eye he "looks great" Whatever. I think it is a condition that happens if you have muscular problems as part of the disease. -----Original Message----- Sent: Wednesday, January 15, 2003 12:42 PM To: Mito Subject: quirky stuff To all, You all were so great in responding to my query about Lily's twitching while sleeping. I passed it on to Lily's neuro, who didn't know what to make of it, but now will keep it in mind as maybe mito related in the future. So I have another question but this one might sound a little "goofy". Are any of your kids or you yourself if you have mito, capable of moving you fingers and/or toes in "unusual ways". Lily at a very young age (10-12 weeks old) could do the "Spock" thing with her fingers. Later on my oldest son pointed out to us and the neuro how she could move her toes independently. Or lift up like #2 & #4 toes-while keeping 1-3-5 down. She was none verbal so we didn't know if she was doing this consciously or sub-consciously. Sorry if this seems impertinent given the present for so many of you. Best wishes to all, Mom to Angel Lily, Red 7 Ada Please contact mito-owner with any problems or questions. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 16, 2003 Report Share Posted January 16, 2003 This was the same thing I thought of. My son also has hyper extendible/mobile joints. I myself find that I tend to wake up at night with my wrists turned under/down. It's such a weird thing. cara -----Original Message-----From: R Sent: Wednesday, January 15, 2003 4:38 PMTo: Mito Subject: RE: quirky stuff , Cameron has hyper mobility in his joints. They can bend in strange ways and are loose. He holds his hands in strange positions and when I question this the therapist says it is usually when his brain is trying hard to tell him to do something ( like stack blocks). One hand may be trying the activity and the other will look kind of "spastic". I am the only one who really notices (they say) because to the naked eye he "looks great" Whatever. I think it is a condition that happens if you have muscular problems as part of the disease. -----Original Message----- Sent: Wednesday, January 15, 2003 12:42 PMTo: Mito Subject: quirky stuffTo all,You all were so great in responding to my query about Lily's twitching while sleeping. I passed it on to Lily's neuro, who didn't know what to make of it, but now will keep it in mind as maybe mito related in the future.So I have another question but this one might sound a little "goofy".Are any of your kids or you yourself if you have mito, capable of moving you fingers and/or toes in "unusual ways". Lily at a very young age (10-12 weeks old) could do the "Spock" thing with her fingers.Later on my oldest son pointed out to us and the neuro how she could move her toes independently. Or lift up like #2 & #4 toes-while keeping 1-3-5 down. She was none verbal so we didn't know if she was doing this consciously or sub-consciously.Sorry if this seems impertinent given the present for so many of you.Best wishes to all,Mom to Angel Lily, Red 7 AdaPlease contact mito-owner with any problems or questions. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 16, 2003 Report Share Posted January 16, 2003 This was the same thing I thought of. My son also has hyper extendible/mobile joints. I myself find that I tend to wake up at night with my wrists turned under/down. It's such a weird thing. cara -----Original Message-----From: R Sent: Wednesday, January 15, 2003 4:38 PMTo: Mito Subject: RE: quirky stuff , Cameron has hyper mobility in his joints. They can bend in strange ways and are loose. He holds his hands in strange positions and when I question this the therapist says it is usually when his brain is trying hard to tell him to do something ( like stack blocks). One hand may be trying the activity and the other will look kind of "spastic". I am the only one who really notices (they say) because to the naked eye he "looks great" Whatever. I think it is a condition that happens if you have muscular problems as part of the disease. -----Original Message----- Sent: Wednesday, January 15, 2003 12:42 PMTo: Mito Subject: quirky stuffTo all,You all were so great in responding to my query about Lily's twitching while sleeping. I passed it on to Lily's neuro, who didn't know what to make of it, but now will keep it in mind as maybe mito related in the future.So I have another question but this one might sound a little "goofy".Are any of your kids or you yourself if you have mito, capable of moving you fingers and/or toes in "unusual ways". Lily at a very young age (10-12 weeks old) could do the "Spock" thing with her fingers.Later on my oldest son pointed out to us and the neuro how she could move her toes independently. Or lift up like #2 & #4 toes-while keeping 1-3-5 down. She was none verbal so we didn't know if she was doing this consciously or sub-consciously.Sorry if this seems impertinent given the present for so many of you.Best wishes to all,Mom to Angel Lily, Red 7 AdaPlease contact mito-owner with any problems or questions. Quote Link to comment Share on other sites More sharing options...
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