Guest guest Posted April 23, 2005 Report Share Posted April 23, 2005 Kim I was going to post and ask how the game went but time got away from me today...we have a birthday girl tomorrow.... anyway, I am glad your ped as concerned and followed-through. You know, andrew would sometime drag his foot for about 48 hours at times and we think it was a SLE. However, as his muscle tone decreased, he got more and more flat footed and his feet spread (he was so big that buying shoes was so hard). He would flop his feet while he walked too. Did the pedi test his reflexes when he went in the other day? 's docs would do it several times before they got some, if any, response. deb...mom to four great kids and wife to one amazing guy!www.LifeofLoveProject.orgwww.debwells.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 23, 2005 Report Share Posted April 23, 2005 What is an SLE ? Yes,he tested his reflexes,,and didn't find any at all,in the left leg. Then he had him change positions,,,and he got them. I don't know what that means,or anything. I just wish Weds would hurry up and get here !!! I just cannot stop obsessing about it ! BTW,,thanks for e-mailing me 's story. I really appreciate it. Have I ever told you that Ethan's middle name is ? I just thought that was interesting SLE=Stroke-Like Episode. I don't know either. We are in the diagnostic game with True so I am feeling that stuff with you...we are waiting on a big neurosurgery appt on Thursday. means strong and manly...surely fit for my gentle and strong giant! Glad you got the story...hope it helped! deb...mom to four great kids and wife to one amazing guy!www.LifeofLoveProject.orgwww.debwells.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 23, 2005 Report Share Posted April 23, 2005 I'm curious,,in your story about ,,maybe I missed it,,but did the MRI show anything,,or was it the biopsy that showed something ? I just wonder if the MRI is going to be inconclusive,or if mito usually shows up on MRI. it might have been at the end. With , he never had the typical mito labs...and his first two MRI's were normal. He had one two months before he died (he was already on hospice) and it showed cerebral atropy and white matter changes. There are definitely mito kids who have MRI abnormalities but there are also those with normal ones. When Bliss was little and in her diagnostic phase the neuro told me you could have the most handicapped person you ever seen with a normal MRI and you could have the smartest person in the world with a terrible looking one. I think you can to go by clinical symptoms first. It sounds like your doc is not dismissing anything and that's 90% of the family! Funny Ethan's moving furniture! That's cute! deb...mom to four great kids and wife to one amazing guy!www.LifeofLoveProject.orgwww.debwells.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 23, 2005 Report Share Posted April 23, 2005 Well,,we had Ethan's game . He is still walking with his foot turned in,and kinda dragging it a little. His pediatrician was there,,and was very observant. I saw him watching Ethan almost the entire game. He even walked across the field twice to get a closer look. I just love this man so much ! After the game he told me that it looks like Ethan has hurt his foot,,and asked me,if I thought he had. He wanted to know if he cries when I put his shoes on,,or anything like that. I told him no,,that he is acting fine,,able to jump and play. He said that even if he did hurt it,,that doesn't explain why he has been doing this off and on,for about a month,or so. Or why his leg is all of a sudden weaker. He thinks that we will know alot more after the MRI,on Weds. I am hopeful that we will,,but I can't imagine getting any kind of good news,from an MRI . I'm still very nervous,,and am constantly watching him to see if anything new is going on. So far nothing new,,other than he seems to be more tired,than usual. He was very cranky and ready for bed by about 7:30 tonight. That's about it,,,,thanks for the continued support. I don't know what I would do without y'all !Kim mom to Meaghan 15 ~~Katelyn 12 Bipolar,and OCD ~~ Logan 7 Autism,congenital myopathy,possible mitochondrial disease,and JRA ~~ and Ethan 5 and 100 % BOY__________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 23, 2005 Report Share Posted April 23, 2005 Deb, What is an SLE ? Yes,he tested his reflexes,,and didn't find any at all,in the left leg. Then he had him change positions,,,and he got them. I don't know what that means,or anything. I just wish Weds would hurry up and get here !!! I just cannot stop obsessing about it ! BTW,,thanks for e-mailing me 's story. I really appreciate it. Have I ever told you that Ethan's middle name is ? I just thought that was interesting :)Kim mom to Meaghan 15 ~~Katelyn 12 Bipolar,and OCD ~~ Logan 7 Autism,congenital myopathy,possible mitochondrial disease,and JRA ~~ and Ethan 5 and 100 % BOY__________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 23, 2005 Report Share Posted April 23, 2005 Ohh,,I thought it had something to do with a stroke,,but couldn't figure out what the LE stood for.lol Don't you just hate being in the dx phase of it all ? It makes me crazy ! I'm curious,,in your story about ,,maybe I missed it,,but did the MRI show anything,,or was it the biopsy that showed something ? I just wonder if the MRI is going to be inconclusive,or if mito usually shows up on MRI. I have a feeling he is looking for something other than mito,,but can't figure out what it would be ! Maybe a tumor,or something ? I have tried looking it up with his symptoms,,but have drawn a blank. Funny that would mean strong and manly,,,Ethan is very much like a man. Very laid back,,and easy going. And,,judging by the way he has been moving around his furniture,in his room,,I would say he is strong,also :)Kim mom to Meaghan 15 ~~Katelyn 12 Bipolar,and OCD ~~ Logan 7 Autism,congenital myopathy,possible mitochondrial disease,and JRA ~~ and Ethan 5 and 100 % BOY__________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 24, 2005 Report Share Posted April 24, 2005 HAPPY BIRTHDAY BLISS!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!VisibleWorship@... wrote: Kim I was going to post and ask how the game went but time got away from me today...we have a birthday girl tomorrow.... anyway, I am glad your ped as concerned and followed-through. You know, andrew would sometime drag his foot for about 48 hours at times and we think it was a SLE. However, as his muscle tone decreased, he got more and more flat footed and his feet spread (he was so big that buying shoes was so hard). He would flop his feet while he walked too. Did the pedi test his reflexes when he went in the other day? 's docs would do it several times before they got some, if any, response. deb...mom to four great kids and wife to one amazing guy!www.LifeofLoveProject.orgwww.debwells.comPlease contact mito-owner with any problems or questions. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 24, 2005 Report Share Posted April 24, 2005 Kim, Just curious about the reflex thing. Does it mean anything when they have a hard time getting any? I know several times they haven't been able to get any in Sophie's legs and I just thought they were doing it wrong (great denial, huh?). I'm just wondering now if I should have been concerned. Meagan, Mom to Sophia (11 months) www.caringbridge.org/ky/sophiesong__________________________________________________ Quote Link to comment Share on other sites More sharing options...
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