Guest guest Posted January 9, 2005 Report Share Posted January 9, 2005 As I read all of these e-mails, I am learning that although there are many " types " of Mito many have the same characteristics. Is this so? I have been told that my three children probably have Mito. However, no regression began until they were 4 ½ to 5 ½ years old. My daughter also was just diagnosed on Friday with sublexation (SP?) of both hips. I was told that this is because she is getting weaker so now her hips are beginning to dislocate slowly. This is new for her on her x-rays since July (her last appointment/x-ray with ortho). Do your children have this? What have you or the doctors done about this? The Pedi says that she too has now begun the regression. She just turned 5 in September. Once these children begin regressing does it not stop? With my children, they are regressing both cognitive and physical. Does this happen to all of your children too? I noticed that y'all are talking about where the muscle biopsies were to be sent instead of just your hospital reading it. Is there a reason that it should be sent elsewhere? I am asking because my son's biopsy was read at our hospital and they did not send it off anywhere. It just showed that he was not using his muscles much (which is funny because he walks and plays). They also said that it had something increased. It has been so long now I don't know what it was. The doctors said at that time that it was not abnormal or alarming enough for the lab to decide to send off or do more studies on. UMDF said that you can have a false negative. Have any of you had this? They said that if you are in a good mode, it has happened for it to show negative although they have Mito. Anyone have this? Funny thing is that my muscle biopsy showed exactly that same as my son's and I am always busy walking around and even carrying children up the stairs. So I am defiantly using my muscles. They were testing me for adult onset Mito. Who knows? As far as the walker with a seat goes, my daughter has a rifton gait trainer that you can put on as much support as necessary or use it as a regular walker. She has lumbar support and a seat. Just a thought. I am so glad that there is a group like this that I can talk to and ask question to. No one else seems to understand or have children like mine. I am tired of hearing that my children are so confusing and complicated. Thank you for being out there. Being a single mom, I often feel alone when it comes to my children's needs. I know that most importantly that I do have God with us and am extremely grateful. But I am also grateful that someone out there might also be like us. Thank you! Laurie angels3@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 9, 2005 Report Share Posted January 9, 2005 hi laurie, my daughter just had surgery (soft tissue release) on thursday in both legs b/c of her hips...they too are slowly becoming dislocated. they are hoping this surgery will work...if not then she may need to have actual bone hip surgery, which is much more invasive. my daughter, anna grace, is nonambulatory, but does have a gait trainer. and yes there are many types of mito (anna grace has been dx with leighs) and many characteristics....a lot of kids may show the same symptoms, but many show completly different ones too. we took anna grace to atlanta to see dr. shoffner for her muscle biopsy. we were told fresh muscle biopsy was best and dr. cohen supported us with taking her to atlanta. take care, bethany mom to brennan 8, palmer & anna grace (leighs) 5 > As I read all of these e-mails, I am learning that although there are many > " types " of Mito many have the same characteristics. Is this so? I have > been told that my three children probably have Mito. However, no regression > began until they were 4 ½ to 5 ½ years old. My daughter also was just > diagnosed on Friday with sublexation (SP?) of both hips. I was told that > this is because she is getting weaker so now her hips are beginning to > dislocate slowly. This is new for her on her x-rays since July (her last > appointment/x-ray with ortho). Do your children have this? What have you > or the doctors done about this? The Pedi says that she too has now begun > the regression. She just turned 5 in September. Once these children begin > regressing does it not stop? With my children, they are regressing both > cognitive and physical. Does this happen to all of your children too? > > I noticed that y'all are talking about where the muscle biopsies were to be > sent instead of just your hospital reading it. Is there a reason that it > should be sent elsewhere? I am asking because my son's biopsy was read at > our hospital and they did not send it off anywhere. It just showed that he > was not using his muscles much (which is funny because he walks and plays). > They also said that it had something increased. It has been so long now I > don't know what it was. The doctors said at that time that it was not > abnormal or alarming enough for the lab to decide to send off or do more > studies on. UMDF said that you can have a false negative. Have any of you > had this? They said that if you are in a good mode, it has happened for it > to show negative although they have Mito. Anyone have this? Funny thing is > that my muscle biopsy showed exactly that same as my son's and I am always > busy walking around and even carrying children up the stairs. So I am > defiantly using my muscles. They were testing me for adult onset Mito. Who > knows? > > As far as the walker with a seat goes, my daughter has a rifton gait trainer > that you can put on as much support as necessary or use it as a regular > walker. She has lumbar support and a seat. Just a thought. > > I am so glad that there is a group like this that I can talk to and ask > question to. No one else seems to understand or have children like mine. I > am tired of hearing that my children are so confusing and complicated. > Thank you for being out there. Being a single mom, I often feel alone when > it comes to my children's needs. I know that most importantly that I do > have God with us and am extremely grateful. But I am also grateful that > someone out there might also be like us. Thank you! > > Laurie > angels3@h... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 9, 2005 Report Share Posted January 9, 2005 Bethany, Thank you for writing back. My daughter, Lacey is also nonambulatory. She uses her gait trainer a little in the house, but not for long. She tires out too quickly. She is also very hypotonic. She does drive her power wheelchair though (as long as you do not stand next to her, she does well J ). Before the surgery, were there any other alternatives for your daughter? Right know Lacey wears KAFO’S. But these don’t support her hips. I am just so scared to ever have her undergo any surgeries because she had so many complications and almost died when she got her g-button put in. The doctors don’t even want to do any biopsies on her due to the breathing and life threatening complications she had. However, the ortho is watching her for scoliosis and said that eventually she will need a rod in her back. I guess that I am mostly afraid since she is now beginning the regression too. This is the first medical test that confirmed it. Her PT and I have been thinking that her trunk is getting weaker. I know that I have said this a lot, but I am just worried. All the doctors said that when she beings regressing, she will go faster than my boys because she started out so much weaker and more complicated. I guess that reality is setting in. How did you get insurance to pay for you to go to Atlanta. Did they pay the doctor bills too? Is this doctor a top specialist with Mito? Are there any doctors in Texas that are great with Mito? How was your daughter diagnosed? I am sorry that I am asking so many questions, I am just trying to learn all that I can. All I keep hearing down here is “we just don’t know”. Thank you again, Laurie Re: just learning hi laurie, my daughter just had surgery (soft tissue release) on thursday in both legs b/c of her hips...they too are slowly becoming dislocated. they are hoping this surgery will work...if not then she may need to have actual bone hip surgery, which is much more invasive. my daughter, anna grace, is nonambulatory, but does have a gait trainer. and yes there are many types of mito (anna grace has been dx with leighs) and many characteristics....a lot of kids may show the same symptoms, but many show completly different ones too. we took anna grace to atlanta to see dr. shoffner for her muscle biopsy. we were told fresh muscle biopsy was best and dr. cohen supported us with taking her to atlanta. take care, bethany mom to brennan 8, palmer & anna grace (leighs) 5 > As I read all of these e-mails, I am learning that although there are many > " types " of Mito many have the same characteristics. Is this so? I have > been told that my three children probably have Mito. However, no regression > began until they were 4 ½ to 5 ½ years old. My daughter also was just > diagnosed on Friday with sublexation (SP?) of both hips. I was told that > this is because she is getting weaker so now her hips are beginning to > dislocate slowly. This is new for her on her x-rays since July (her last > appointment/x-ray with ortho). Do your children have this? What have you > or the doctors done about this? The Pedi says that she too has now begun > the regression. She just turned 5 in September. Once these children begin > regressing does it not stop? With my children, they are regressing both > cognitive and physical. Does this happen to all of your children too? > > I noticed that y'all are talking about where the muscle biopsies were to be > sent instead of just your hospital reading it. Is there a reason that it > should be sent elsewhere? I am asking because my son's biopsy was read at > our hospital and they did not send it off anywhere. It just showed that he > was not using his muscles much (which is funny because he walks and plays). > They also said that it had something increased. It has been so long now I > don't know what it was. The doctors said at that time that it was not > abnormal or alarming enough for the lab to decide to send off or do more > studies on. UMDF said that you can have a false negative. Have any of you > had this? They said that if you are in a good mode, it has happened for it > to show negative although they have Mito. Anyone have this? Funny thing is > that my muscle biopsy showed exactly that same as my son's and I am always > busy walking around and even carrying children up the stairs. So I am > defiantly using my muscles. They were testing me for adult onset Mito. Who > knows? > > As far as the walker with a seat goes, my daughter has a rifton gait trainer > that you can put on as much support as necessary or use it as a regular > walker. She has lumbar support and a seat. Just a thought. > > I am so glad that there is a group like this that I can talk to and ask > question to. No one else seems to understand or have children like mine. I > am tired of hearing that my children are so confusing and complicated. > Thank you for being out there. Being a single mom, I often feel alone when > it comes to my children's needs. I know that most importantly that I do > have God with us and am extremely grateful. But I am also grateful that > someone out there might also be like us. Thank you! > > Laurie > angels3@h... Please contact mito-owner with any problems or questions. Quote Link to comment Share on other sites More sharing options...
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