Guest guest Posted July 22, 2004 Report Share Posted July 22, 2004 Can anyone tell me how often a child with mito should have an MRI? The twins have not had one since they were six months old when our mito journey began. They are quickly approaching their third birthday (10/3) and I am wondering if we should do an MRI to see if there have been any changes. They continue to have uncontrolled myoclonics and have added a couple of other seizures in the mix as of late. We see Dr. Whiteman next week so I was wondering if I should bring it up to him. Thanks for any input. Kim - Mom to and Lindsey - Partial Complex I Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 22, 2004 Report Share Posted July 22, 2004 so far we have had two in two years and they did show a decrease in the Cerebellar portion of the brain, I think they should have one real soon, also have them perform the MRS that told us about the lactic acid levels. good luck -----Original Message-----From: knovy4@... Sent: Thursday, July 22, 2004 10:37 AMTo: mito Subject: MRI questionCan anyone tell me how often a child with mito should have an MRI? The twins have not had one since they were six months old when our mito journey began. They are quickly approaching their third birthday (10/3) and I am wondering if we should do an MRI to see if there have been any changes. They continue to have uncontrolled myoclonics and have added a couple of other seizures in the mix as of late. We see Dr. Whiteman next week so I was wondering if I should bring it up to him.Thanks for any input.Kim - Mom to and Lindsey - Partial Complex IPlease contact mito-owner with any problems or questions. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 22, 2004 Report Share Posted July 22, 2004 My little girl has had an mri every year since she was born but that was because they were keeping an eye on some white matter density that they found on her cat scan that hasnt gotten worse nor better so I really dont mind having her do it becuase we are just taking precautions other than that she has been doing pretty well..hope that helps. mother to nicole kelli 4yrs mito complex1 def In a message dated 7/22/2004 10:36:55 AM Eastern Daylight Time, knovy4@... writes: >Can anyone tell me how often a child with mito should have an MRI? The twins >have not had one since they were six months old when our mito journey began. >They are quickly approaching their third birthday (10/3) and I am wondering if >we should do an MRI to see if there have been any changes. They continue to >have uncontrolled myoclonics and have added a couple of other seizures in the >mix as of late. We see Dr. Whiteman next week so I was wondering if I should >bring it up to him. > >Thanks for any input. >Kim - Mom to and Lindsey - Partial Complex I > > > >Please contact mito-owner with any problems or questions. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 22, 2004 Report Share Posted July 22, 2004 Kim, I believe that Cohen told us if there were no changes they don't need repeated. but it sounds like their neuro issues have gotten worse and I would probably ask for one for them (or two as the case may be for you guys!) Dawn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 22, 2004 Report Share Posted July 22, 2004 Kim, Wyatt has them every two years. The last one was an MRI/MRS. If you are going to have and MRI done I would ask to have ther MRS also. That way they can check lactic acid levels. Mayo can do them for you and I would recommend having them done there instead of at your local hospital. I'm guessing Dr. Whiteman would say yes to having it done also. Geri-Anne and Wyatt, Complex I > Can anyone tell me how often a child with mito should have an MRI? The twins > have not had one since they were six months old when our mito journey began. > They are quickly approaching their third birthday (10/3) and I am wondering if > we should do an MRI to see if there have been any changes. They continue to > have uncontrolled myoclonics and have added a couple of other seizures in the > mix as of late. We see Dr. Whiteman next week so I was wondering if I should > bring it up to him. > > Thanks for any input. > Kim - Mom to and Lindsey - Partial Complex I Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 22, 2004 Report Share Posted July 22, 2004 I think asking Dr. Whiteman or their neurologist is a good idea as every case is so different. Asenath unfortunately averages a MRI and MRA every 6 months due to the CNS Vasculitis issue. But I assume that once yearly or bi-yearly may be plenty. In many cases probably even less frequently if progression isn't noticed. Best wishes for your trip to Mayo next Wednesday. Darla > Can anyone tell me how often a child with mito should have an MRI? The twins > have not had one since they were six months old when our mito journey began. > They are quickly approaching their third birthday (10/3) and I am wondering if > we should do an MRI to see if there have been any changes. They continue to > have uncontrolled myoclonics and have added a couple of other seizures in the > mix as of late. We see Dr. Whiteman next week so I was wondering if I should > bring it up to him. > > Thanks for any input. > Kim - Mom to and Lindsey - Partial Complex I Quote Link to comment Share on other sites More sharing options...
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