Guest guest Posted May 27, 2000 Report Share Posted May 27, 2000 , When Carl was younger he had two episodes where he seemed weaker and less coordinated on one side and that side of his face would droop to where when he smiled only one side of his mouth would go up (the neuro referred to it as a palsy of the 7th cranial nerve). The facial thing lasted for a couple of months. Usually when it's a cranial nerve the eye will also appear to be open wider than the other. He was in a little slump a couple of months ago and the facial droop happened again but didn't last as long. I just wanted to let you know that somebody else has seen this! Terri > >Reply-To: Mitoegroups >To: <Mitoegroups> >Subject: Re: - worsening disease >Date: Sat, 27 May 2000 02:39:38 -0400 > >Hi, > >You know, after seeing your post, before mito was suspected in my son, he >too limped for several days and then it just stopped - now we are looking >at >mito - I often noticed a slight facial change in my son also from time to >time that the docs thought I was imagining (like a lowering on one side of >eye and mouth muscles). > >Wonder who else sees this? > >karen h ________________________________________________________________________ Get Your Private, Free E-mail from MSN Hotmail at http://www.hotmail.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 27, 2000 Report Share Posted May 27, 2000 l, When your son lost his muscle tone what were the signs if any . I'm verry worried about my son limp and dragging his leg ,he's done it four times and has lasted for a few days at a time. thank you Vange Re: - worsening disease > , > > The hardest thing that I have had to learn about Mito is that none of our > cases are exactly like the others. Our 9 year old son was diagnosed last July > and initially I thought that someone had to have the exact same story, but I > was wrong. It truly is an individuallistic disease. > > Our son was a typical ADHD child who was intellectually gifted. By the time > he was two he was learning to read and by 3 was sounding out words. By the > time he was in Kindergarten he was reading on a 3rd grade level and doing 1st > grade math. But, he could not play with peers, could not make eye contact and > had the social skills of a 2 year old. He was then diagnosed with Asperger's > Syndrome (high Functioning autism). He didn't develop any neurological > symptons until just before his 7th birthday. Then his seizures began. By the > time he was 8 he had developed multiple types of seizures, regressed > tremendously academically, lost muscle tone and became very ataxic. He had > sleep apnea which caused severe aggression and hyperactivity. It was a > nightmere. Last July he had a fresh muscle biopsy which confirmed Complex 1 > Deficiency. > > When I first got the diagnosis I searched the internet and was depressed. The > first 2 or 3 websites I found were dedicated to children who had passed away. > I shut down the computer and cried for 1 whole day. Then I found Ken Hirsch's > site (Thanks Ken and although parts of it are so sad to read, it was like > a light. That mito doesn't mean the end. > > Since then has been put on multiple supplements, he is on the Ketogenic > Diet for his seizures as well as a medication called Felbamate. But, he is > doing well for . He has regained all his academic skills, taught himself > to ride his two wheeler again (even though it is a little wobbly), and best > of all he has taught us to adapt to his needs. I like to think of this as a > good period in his life. Yes, he still has to wear a helmet and occasionally > use a wheelchair (for fatique). And his social skills are still half his > chronological age, but compared to where he was a year ago, life is good. My > point being, neurological deterioration isn't always irreversable. > > I think that what has changed is our perspective on how he is doing. We don't > look at the disease as a " death sentence " anymore. Now we are learning how to > get on with life and live with the disease. I don't see him as a > " chronically ill child " anymore. I know see him as a " child " who is > chronically ill. > > I am fortunate enough to have a great support group which has helped us > tremendously. This list is full of people with different experiences and tons > of knowledge. They have helped me in understanding the neverending list of > weird things about mito disorders. > > Take care, > Laurel > > > > > > Brought to you by www.imdn.org - an on-line support group for those affected by mitochondrial disease. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 27, 2000 Report Share Posted May 27, 2000 > l, When your son lost his muscle tone what were the signs if any . > I'm verry worried about my son limp and dragging his leg ,he's done it four > times and has lasted for a few days at a time. thank you Vange Somewhere in the back of my mind it's telling me this might be carnitine deficiency - has that been checked? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 27, 2000 Report Share Posted May 27, 2000 Hi, You know, after seeing your post, before mito was suspected in my son, he too limped for several days and then it just stopped - now we are looking at mito - I often noticed a slight facial change in my son also from time to time that the docs thought I was imagining (like a lowering on one side of eye and mouth muscles). Wonder who else sees this? karen h - Original Message ----- To: <Mitoegroups> Sent: Friday, May 26, 2000 11:11 PM Subject: Re: - worsening disease > l, When your son lost his muscle tone what were the signs if any . > I'm verry worried about my son limp and dragging his leg ,he's done it four > times and has lasted for a few days at a time. thank you Vange > Re: - worsening disease > > > > , > > > > The hardest thing that I have had to learn about Mito is that none of our > > cases are exactly like the others. Our 9 year old son was diagnosed last > July > > and initially I thought that someone had to have the exact same story, but > I > > was wrong. It truly is an individuallistic disease. > > > > Our son was a typical ADHD child who was intellectually gifted. By the > time > > he was two he was learning to read and by 3 was sounding out words. By the > > time he was in Kindergarten he was reading on a 3rd grade level and doing > 1st > > grade math. But, he could not play with peers, could not make eye contact > and > > had the social skills of a 2 year old. He was then diagnosed with > Asperger's > > Syndrome (high Functioning autism). He didn't develop any neurological > > symptons until just before his 7th birthday. Then his seizures began. By > the > > time he was 8 he had developed multiple types of seizures, regressed > > tremendously academically, lost muscle tone and became very ataxic. He had > > sleep apnea which caused severe aggression and hyperactivity. It was a > > nightmere. Last July he had a fresh muscle biopsy which confirmed Complex > 1 > > Deficiency. > > > > When I first got the diagnosis I searched the internet and was depressed. > The > > first 2 or 3 websites I found were dedicated to children who had passed > away. > > I shut down the computer and cried for 1 whole day. Then I found Ken > Hirsch's > > site (Thanks Ken and although parts of it are so sad to read, it was > like > > a light. That mito doesn't mean the end. > > > > Since then has been put on multiple supplements, he is on the > Ketogenic > > Diet for his seizures as well as a medication called Felbamate. But, he is > > doing well for . He has regained all his academic skills, taught > himself > > to ride his two wheeler again (even though it is a little wobbly), and > best > > of all he has taught us to adapt to his needs. I like to think of this as > a > > good period in his life. Yes, he still has to wear a helmet and > occasionally > > use a wheelchair (for fatique). And his social skills are still half his > > chronological age, but compared to where he was a year ago, life is good. > My > > point being, neurological deterioration isn't always irreversable. > > > > I think that what has changed is our perspective on how he is doing. We > don't > > look at the disease as a " death sentence " anymore. Now we are learning how > to > > get on with life and live with the disease. I don't see him as a > > " chronically ill child " anymore. I know see him as a " child " who is > > chronically ill. > > > > I am fortunate enough to have a great support group which has helped us > > tremendously. This list is full of people with different experiences and > tons > > of knowledge. They have helped me in understanding the neverending list of > > weird things about mito disorders. > > > > Take care, > > Laurel > > > > > > > > > > > > Brought to you by www.imdn.org - an on-line support group for those > affected by mitochondrial disease. > > > > > > > > > ------------------------------------------------------------------------ > Missing old school friends? Find them here: > http://click./1/4055/2/_/368657/_/959401737/ > ------------------------------------------------------------------------ > > Brought to you by www.imdn.org - an on-line support group for those affected by mitochondrial disease. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 27, 2000 Report Share Posted May 27, 2000 thanks terry! karen h Re: - worsening disease > >Date: Sat, 27 May 2000 02:39:38 -0400 > > > >Hi, > > > >You know, after seeing your post, before mito was suspected in my son, he > >too limped for several days and then it just stopped - now we are looking > >at > >mito - I often noticed a slight facial change in my son also from time to > >time that the docs thought I was imagining (like a lowering on one side of > >eye and mouth muscles). > > > >Wonder who else sees this? > > > >karen h > > > ________________________________________________________________________ > Get Your Private, Free E-mail from MSN Hotmail at http://www.hotmail.com > > > ------------------------------------------------------------------------ > Best friends, most artistic, class clown Find 'em here: > http://click./1/4054/2/_/368657/_/959411768/ > ------------------------------------------------------------------------ > > Brought to you by www.imdn.org - an on-line support group for those affected by mitochondrial disease. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 29, 2000 Report Share Posted May 29, 2000 All, my son (diagnosed autism, possible mito connection) has done this 'neuropathy', dragging right foot, making sure of his footing before putting weight on his foot. The first time was after a strep infection that was treated with antibiotics(he was 4 then, just turned 7). After that it flared up for several weeks at a time. This went on for almost 2 years until we started a supplement called sphingolin - myelin basic protein. He tested positive for antibodies against his own myelin prior to that strep infection, but I did not start the sphingolin for over a year. He has only had one small bout of this neuropathy since then - during phase where he was cutting his first two permanent teeth. He could not communicate with me during the first few episodes, but the last few episodes he told me his foot was on fire, that his hands and feet were broken, even though he continued to use them normally, except for the drag/sure footing stuff. He recently developed winged scapulas. The neuro has suspected a form of muscular dystrophy or mito involvement. The first neuropathy episode he also would not use the palms of his hands, but would pick stuff up with the backs of his hands. This was only during the first flare-up, even though he complained they were broken during the most recent epiosde when he was teething, he did not display any symptoms that his hands hurt at that time. cara Re: - worsening disease > > > > > > > , > > > > > > The hardest thing that I have had to learn about Mito is that none of > our > > > cases are exactly like the others. Our 9 year old son was diagnosed last > > July > > > and initially I thought that someone had to have the exact same story, > but > > I > > > was wrong. It truly is an individuallistic disease. > > > > > > Our son was a typical ADHD child who was intellectually gifted. By the > > time > > > he was two he was learning to read and by 3 was sounding out words. By > the > > > time he was in Kindergarten he was reading on a 3rd grade level and > doing > > 1st > > > grade math. But, he could not play with peers, could not make eye > contact > > and > > > had the social skills of a 2 year old. He was then diagnosed with > > Asperger's > > > Syndrome (high Functioning autism). He didn't develop any neurological > > > symptons until just before his 7th birthday. Then his seizures began. By > > the > > > time he was 8 he had developed multiple types of seizures, regressed > > > tremendously academically, lost muscle tone and became very ataxic. He > had > > > sleep apnea which caused severe aggression and hyperactivity. It was a > > > nightmere. Last July he had a fresh muscle biopsy which confirmed > Complex > > 1 > > > Deficiency. > > > > > > When I first got the diagnosis I searched the internet and was > depressed. > > The > > > first 2 or 3 websites I found were dedicated to children who had passed > > away. > > > I shut down the computer and cried for 1 whole day. Then I found Ken > > Hirsch's > > > site (Thanks Ken and although parts of it are so sad to read, it was > > like > > > a light. That mito doesn't mean the end. > > > > > > Since then has been put on multiple supplements, he is on the > > Ketogenic > > > Diet for his seizures as well as a medication called Felbamate. But, he > is > > > doing well for . He has regained all his academic skills, taught > > himself > > > to ride his two wheeler again (even though it is a little wobbly), and > > best > > > of all he has taught us to adapt to his needs. I like to think of this > as > > a > > > good period in his life. Yes, he still has to wear a helmet and > > occasionally > > > use a wheelchair (for fatique). And his social skills are still half his > > > chronological age, but compared to where he was a year ago, life is > good. > > My > > > point being, neurological deterioration isn't always irreversable. > > > > > > I think that what has changed is our perspective on how he is doing. We > > don't > > > look at the disease as a " death sentence " anymore. Now we are learning > how > > to > > > get on with life and live with the disease. I don't see him as a > > > " chronically ill child " anymore. I know see him as a " child " who is > > > chronically ill. > > > > > > I am fortunate enough to have a great support group which has helped us > > > tremendously. This list is full of people with different experiences and > > tons > > > of knowledge. They have helped me in understanding the neverending list > of > > > weird things about mito disorders. > > > > > > Take care, > > > Laurel > > > > > > > > > > > > > > > > > > Brought to you by www.imdn.org - an on-line support group for those > > affected by mitochondrial disease. > > > > > > > > > > > > > > > > ------------------------------------------------------------------------ > > Missing old school friends? Find them here: > > http://click./1/4055/2/_/368657/_/959401737/ > > ------------------------------------------------------------------------ > > > > Brought to you by www.imdn.org - an on-line support group for those > affected by mitochondrial disease. > > > > > > > > > ------------------------------------------------------------------------ > Missing old school friends? Find them here: > http://click./1/4055/2/_/368657/_/959409783/ > ------------------------------------------------------------------------ > > Brought to you by www.imdn.org - an on-line support group for those affected by mitochondrial disease. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 30, 2000 Report Share Posted May 30, 2000 Hi my name is . I just thought it was a coincidence your son was talking about his left foot. About a month ago before my daughter stopped walking she complained of her left leg hurting and that her foot hurt. I had come home from work one night and she was not using it. She wouldn't climb stairs or put weight on her foot. This has always seemed strange to me i don't understand it. Even to this day when i ask her why she wont walk she says her feet hurt(she also has balance issues due to the seizures she has). Is your son still walking? Do these flare ups come and go? I'm praying this is just a flare up and my daughter will start walking by herself again. Hang in there and i hope the best for you and your family. Quote Link to comment Share on other sites More sharing options...
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