Guest guest Posted July 22, 2004 Report Share Posted July 22, 2004 We are scheduled with our 10 yr old daughter for a muscle biopsy to confirm Mito, what can I expect at this procedure? should I explain to her? Please help Thanks concerned Mom Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 8, 2004 Report Share Posted September 8, 2004 Hi Again.We'll Mia is 27 months old and she does not,sit independently,talk says a couple of words-ba-ba mama,she does not walk but seems very happy all the time and really healthy otherwise.She also does not like to eat so she has a g-tube in her belly.I have attached a few pictures of mia.The doctors have done blood work,urine,mri,emg,she's been to specialist,genetics, and everything has come back normal.She is having the biopsy in Missouri. -- Re: muscle biopsy Welcome to the group. When you feel up to it, please tell us a little bit about Mia. Where will she be having her biopsy done? If you are looking for information about mitochondrial disorders, the UMDF website is a very good source of information. (www.umdf.org) It can be a bit overwhelming at first but, I have found it to be a great resource.I understand your fear as we were all there at one point. You have found a great bunch of women (and men) in this group. We will be here to listen, answer questions and support you when needed. Kim - Mom to and Lindsey - (soon to be 3!) Partial Complex I, Mason (5) Delaney (7) both healthy> Hi everyone every conversation has been so helpful but also very > scary for us.Our Daughter Mia still does not have the mito dx but > they think she could.She gets the muscle biopsy next wednedsay > anything i should be aware of would be good or any advice?I'm not > that knowledgable about mito.Any advice would be good.> > > > > Please contact mito-owner with any problems or questions. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 8, 2004 Report Share Posted September 8, 2004 I don't know anything about the lab in Missouri. We hope to biopsy our children soon. They are going to Cleveland at the end of the month. Our docs here in IL and in Wisconsin have asked us to get frozen biopsies but I have refused. Fresh mucscle biopsies seem to have better results. So, if your results are negative, you might want to look into getting a fresh muscle biopsy. The only places that can do frest in the US are Cleveland and Atlanta. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 9, 2004 Report Share Posted September 9, 2004 Where in Missouri is Mia having her muscle biopsy done? Audrey has many of her doctors in St. Louis at Cardinal Glennon Children's Hospital. Would love to hear more about Mia. Kathy, grandma to Audrey, 3 yearsstephanie wrote: Hi Again.We'll Mia is 27 months old and she does not,sit independently,talk says a couple of words-ba-ba mama,she does not walk but seems very happy all the time and really healthy otherwise.She also does not like to eat so she has a g-tube in her belly.I have attached a few pictures of mia.The doctors have done blood work,urine,mri,emg,she's been to specialist,genetics, and everything has come back normal.She is having the biopsy in Missouri. -- Re: muscle biopsy Welcome to the group. When you feel up to it, please tell us a little bit about Mia. Where will she be having her biopsy done? If you are looking for information about mitochondrial disorders, the UMDF website is a very good source of information. (www.umdf.org) It can be a bit overwhelming at first but, I have found it to be a great resource.I understand your fear as we were all there at one point. You have found a great bunch of women (and men) in this group. We will be here to listen, answer questions and support you when needed. Kim - Mom to and Lindsey - (soon to be 3!) Partial Complex I, Mason (5) Delaney (7) both healthy> Hi everyone every conversation has been so helpful but also very > scary for us.Our Daughter Mia still does not have the mito dx but > they think she could.She gets the muscle biopsy next wednedsay > anything i should be aware of would be good or any advice?I'm not > that knowledgable about mito.Any advice would be good.> > > > > Please contact mito-owner with any problems or questions. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 10, 2004 Report Share Posted September 10, 2004 Mia is a very beautiful little girl. I have a daughter, Leah, who is 6 years old. She is now just sitting on her own. She does not crawl, walk, or stand on her own. She rolls to get to where she needs to go. She is nonverbal in that she doesn't use words, but babbles. She can say mom, yum, and may be a few other sounds come out of her precious mouth. She is not tube fed. She eats orally. Loves food. You never know with this disease of what kids can and can't do. They always amaze me. Thanks for sending the pictures. Nerenhausen mom to Leah stephanie wrote: Hi Again.We'll Mia is 27 months old and she does not,sit independently,talk says a couple of words-ba-ba mama,she does not walk but seems very happy all the time and really healthy otherwise.She also does not like to eat so she has a g-tube in her belly.I have attached a few pictures of mia.The doctors have done blood work,urine,mri,emg,she's been to specialist,genetics, and everything has come back normal.She is having the biopsy in Missouri. -- Re: muscle biopsy Welcome to the group. When you feel up to it, please tell us a little bit about Mia. Where will she be having her biopsy done? If you are looking for information about mitochondrial disorders, the UMDF website is a very good source of information. (www.umdf.org) It can be a bit overwhelming at first but, I have found it to be a great resource. I understand your fear as we were all there at one point. You have found a great bunch of women (and men) in this group. We will be here to listen, answer questions and support you when needed. Kim - Mom to and Lindsey - (soon to be 3!) Partial Complex I, Mason (5) Delaney (7) both healthy > Hi everyone every conversation has been so helpful but also very > scary for us.Our Daughter Mia still does not have the mito dx but > they think she could.She gets the muscle biopsy next wednedsay > anything i should be aware of would be good or any advice?I'm not > that knowledgable about mito.Any advice would be good. > > > > > Please contact mito-owner with any problems or questions. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 11, 2004 Report Share Posted September 11, 2004 Mia is having her surgery at Children's Mercy Hospital,although tonite i logged in to the umdf site and read on mito and i'm wondering if i should prolong the muscle biop and have them do more lab test. -- Re: muscle biopsy Welcome to the group. When you feel up to it, please tell us a little bit about Mia. Where will she be having her biopsy done? If you are looking for information about mitochondrial disorders, the UMDF website is a very good source of information. (www.umdf.org) It can be a bit overwhelming at first but, I have found it to be a great resource.I understand your fear as we were all there at one point. You have found a great bunch of women (and men) in this group. We will be here to listen, answer questions and support you when needed. Kim - Mom to and Lindsey - (soon to be 3!) Partial Complex I, Mason (5) Delaney (7) both healthy> Hi everyone every conversation has been so helpful but also very > scary for us.Our Daughter Mia still does not have the mito dx but > they think she could.She gets the muscle biopsy next wednedsay > anything i should be aware of would be good or any advice?I'm not > that knowledgable about mito.Any advice would be good.> > > > > Please contact mito-owner with any problems or questions. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 11, 2004 Report Share Posted September 11, 2004 Wow alot of your daughter sounds like Mia but Mia does not like to eat.Does your daughter have mito dx.I'm so scared everything i'm reading sounds like you can't tell what to predict. -- Re: muscle biopsy Welcome to the group. When you feel up to it, please tell us a little bit about Mia. Where will she be having her biopsy done? If you are looking for information about mitochondrial disorders, the UMDF website is a very good source of information. (www.umdf.org) It can be a bit overwhelming at first but, I have found it to be a great resource. I understand your fear as we were all there at one point. You have found a great bunch of women (and men) in this group. We will be here to listen, answer questions and support you when needed. Kim - Mom to and Lindsey - (soon to be 3!) Partial Complex I, Mason (5) Delaney (7) both healthy > Hi everyone every conversation has been so helpful but also very > scary for us.Our Daughter Mia still does not have the mito dx but > they think she could.She gets the muscle biopsy next wednedsay > anything i should be aware of would be good or any advice?I'm not > that knowledgable about mito.Any advice would be good. > > > > > Please contact mito-owner with any problems or questions. > Quote Link to comment Share on other sites More sharing options...
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