Guest guest Posted November 25, 2007 Report Share Posted November 25, 2007 Hi Crabtail, I have the Rett mutation but not full out Rett Syndrome...I have a little head and relatively poor fine motor skills, and hand wringing when I am nervous, and lots of the secondary characteristics (reflux, epilepsy, little cold feet, the stuff that lots of the girls have that they don't know if they don't know someone with Rett) but people who don't know about Rett would never in a million years notice, just that I have a little head. My autistic stuff is a lot more pronounced, except that I'm a very " social " autistic, just not very good at it! I know one other family who has one child with each, and then I know a couple mailing lists for Rett Syndrome. Kassiane genetically interesting? --- autisticcrystal@... wrote: > are there any here who also deal with rett syndrome > as well as autism?. > people seem to know about asperger syndrome but not > as many do about rett > syndrome and it's place on the spectrum. i'm told > that's it's because it's so rare. > but I've met two other families who are dealing with > both rett syndrome and > autism. so we can't be that rare. > > crabtail > > > > **************************************Check out > AOL's list of 2007's hottest > products. > (http://money.aol.com/special/hot-products-2007?NCID=aoltop00030000000001) > > > [Non-text portions of this message have been > removed] > > ________________________________________________________________________________\ ____ Be a better sports nut! Let your teams follow you with Yahoo Mobile. Try it now. http://mobile.yahoo.com/sports;_ylt=At9_qDKvtAbMuh1G1SQtBI7ntAcJ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 25, 2007 Report Share Posted November 25, 2007 Hi Crabtail, I have the Rett mutation but not full out Rett Syndrome...I have a little head and relatively poor fine motor skills, and hand wringing when I am nervous, and lots of the secondary characteristics (reflux, epilepsy, little cold feet, the stuff that lots of the girls have that they don't know if they don't know someone with Rett) but people who don't know about Rett would never in a million years notice, just that I have a little head. My autistic stuff is a lot more pronounced, except that I'm a very " social " autistic, just not very good at it! I know one other family who has one child with each, and then I know a couple mailing lists for Rett Syndrome. Kassiane genetically interesting? --- autisticcrystal@... wrote: > are there any here who also deal with rett syndrome > as well as autism?. > people seem to know about asperger syndrome but not > as many do about rett > syndrome and it's place on the spectrum. i'm told > that's it's because it's so rare. > but I've met two other families who are dealing with > both rett syndrome and > autism. so we can't be that rare. > > crabtail > > > > **************************************Check out > AOL's list of 2007's hottest > products. > (http://money.aol.com/special/hot-products-2007?NCID=aoltop00030000000001) > > > [Non-text portions of this message have been > removed] > > ________________________________________________________________________________\ ____ Be a better sports nut! Let your teams follow you with Yahoo Mobile. Try it now. http://mobile.yahoo.com/sports;_ylt=At9_qDKvtAbMuh1G1SQtBI7ntAcJ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 27, 2007 Report Share Posted November 27, 2007 Hi Crabtail- Sorry...I am behind on checking the group posts so just got this. My daughter Sierra just turned 4. She has classic Rett Syndrome. Its on the spectrum and she has some autism problems but none behavorial. It is highly misdiagnosed as just autism or CP, but there are a lot more medical problems associated then other ASDs. I hope every one in here has had their autistic loved one tested for this, since it is so misdiagnosed. Are you asking because you have a daughter with RS? Elaine, Sierra (4 Rett Syndrome) and twin brother Dakota > > are there any here who also deal with rett syndrome as well as autism?. > people seem to know about asperger syndrome but not as many do about rett > syndrome and it's place on the spectrum. i'm told that's it's because it's so rare. > but I've met two other families who are dealing with both rett syndrome and > autism. so we can't be that rare. > > crabtail > > > > **************************************Check out AOL's list of 2007's hottest > products. > (http://money.aol.com/special/hot-products-2007? NCID=aoltop00030000000001) > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 27, 2007 Report Share Posted November 27, 2007 Hi Crabtail- Sorry...I am behind on checking the group posts so just got this. My daughter Sierra just turned 4. She has classic Rett Syndrome. Its on the spectrum and she has some autism problems but none behavorial. It is highly misdiagnosed as just autism or CP, but there are a lot more medical problems associated then other ASDs. I hope every one in here has had their autistic loved one tested for this, since it is so misdiagnosed. Are you asking because you have a daughter with RS? Elaine, Sierra (4 Rett Syndrome) and twin brother Dakota > > are there any here who also deal with rett syndrome as well as autism?. > people seem to know about asperger syndrome but not as many do about rett > syndrome and it's place on the spectrum. i'm told that's it's because it's so rare. > but I've met two other families who are dealing with both rett syndrome and > autism. so we can't be that rare. > > crabtail > > > > **************************************Check out AOL's list of 2007's hottest > products. > (http://money.aol.com/special/hot-products-2007? NCID=aoltop00030000000001) > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 27, 2007 Report Share Posted November 27, 2007 In a message dated 11/27/2007 10:26:01 P.M. Central Standard Time, mimuful@... writes: Hi Crabtail- Sorry...I am behind on checking the group posts so just got this. My daughter Sierra just turned 4. She has classic Rett Syndrome. Its on the spectrum and she has some autism problems but none behavorial. It is highly misdiagnosed as just autism or CP, but there are a lot more medical problems associated then other ASDs. I hope every one in here has had their autistic loved one tested for this, since it is so misdiagnosed. Are you asking because you have a daughter with RS? Elaine, Sierra (4 Rett Syndrome) and twin brother Dakota yes, mine daughter has it, but we also have eight autistics in our family. my nephew died and he had autism and cp, they didn't look him over because he was a boy. we also have some autistics with no behavioral problems. some of our autistics don't look much different than mine dolphin. like two of mine nephews have many of the same issues, gastro issues, seizures, scoliosis and the such my nephew that died looked more like retts than mine daughter, as he was in a wheelchair and tube fed and had bad seizures, he also weighed little, very thin,he also, like mine dolphin, had a little head. that's like some of us. some of us have macroencephaly big heads, and microencephaly small heads. those of us with smaller heads have more medical and health issues. now they've just gone through all of us taking blood and dna samples. my daughter because of the family history and because she was a bit higher functioning was diagnosed with just severe autism at age 2 it wasn't until she had a physical regression that they checked for rett syndrome she wasn't diagnosed until well until age three. my nephew was never checked for it because he was a boy although he also had a severe physical regression. his diagnosis however was childhood disintegrative disorder. we also had two girl cousins that died young. one was a non verbal girl that was wheelchair bound who always had her hands clasped and had bad physical issues and died at age fifteen. she clearly had autistic issues although was not formerly diagnosed. her diagnosis was mental retardation and a form of cp. but my nephews and wanda's cp looked very rettlike. anyhow, he diagnosis was autism first, but that was never considered to be life threatening, although we have had family members with versions of autism that also left them medically fragile and categorized as living with a life threatening condition they had such medical issues. my nephew died after a spinal fusion to correct his severe scoliosis and he was very physically fragile and highly medical. he also had teeth grinding and respiratory issues. we have eight autistics from the most severe to higher functioning but the rett syndrome is treated like it's completely different. even as we have severe autistics living with more issues some having died already at young ages that looked in far worse shape than mine child with rett syndrome. my nephews diagnosis was autism for so long, how can he have a form of autism that killed him? something else had to be going on. anyhow i just really miss him and he was so young and i wish we had more answers as to why we lost him. they would look for x linked mutations in immediate family members of someone diagnosed with rett syndrome not cousins though. so had my nephew been mine son he would have been looked over as they went through me as i have a diagnosis of autism since age twelve, i was non verbal until about age nine and i've got speech now. but they didn't check him out not even when he was dieing and there was nothing anyone can do. well i guess it doesn't matter really he's dead now anyhow and nothing will bring him back. Crabtail **************************************Check out AOL's list of 2007's hottest products. (http://money.aol.com/special/hot-products-2007?NCID=aoltop00030000000001) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 27, 2007 Report Share Posted November 27, 2007 In a message dated 11/27/2007 10:26:01 P.M. Central Standard Time, mimuful@... writes: Hi Crabtail- Sorry...I am behind on checking the group posts so just got this. My daughter Sierra just turned 4. She has classic Rett Syndrome. Its on the spectrum and she has some autism problems but none behavorial. It is highly misdiagnosed as just autism or CP, but there are a lot more medical problems associated then other ASDs. I hope every one in here has had their autistic loved one tested for this, since it is so misdiagnosed. Are you asking because you have a daughter with RS? Elaine, Sierra (4 Rett Syndrome) and twin brother Dakota yes, mine daughter has it, but we also have eight autistics in our family. my nephew died and he had autism and cp, they didn't look him over because he was a boy. we also have some autistics with no behavioral problems. some of our autistics don't look much different than mine dolphin. like two of mine nephews have many of the same issues, gastro issues, seizures, scoliosis and the such my nephew that died looked more like retts than mine daughter, as he was in a wheelchair and tube fed and had bad seizures, he also weighed little, very thin,he also, like mine dolphin, had a little head. that's like some of us. some of us have macroencephaly big heads, and microencephaly small heads. those of us with smaller heads have more medical and health issues. now they've just gone through all of us taking blood and dna samples. my daughter because of the family history and because she was a bit higher functioning was diagnosed with just severe autism at age 2 it wasn't until she had a physical regression that they checked for rett syndrome she wasn't diagnosed until well until age three. my nephew was never checked for it because he was a boy although he also had a severe physical regression. his diagnosis however was childhood disintegrative disorder. we also had two girl cousins that died young. one was a non verbal girl that was wheelchair bound who always had her hands clasped and had bad physical issues and died at age fifteen. she clearly had autistic issues although was not formerly diagnosed. her diagnosis was mental retardation and a form of cp. but my nephews and wanda's cp looked very rettlike. anyhow, he diagnosis was autism first, but that was never considered to be life threatening, although we have had family members with versions of autism that also left them medically fragile and categorized as living with a life threatening condition they had such medical issues. my nephew died after a spinal fusion to correct his severe scoliosis and he was very physically fragile and highly medical. he also had teeth grinding and respiratory issues. we have eight autistics from the most severe to higher functioning but the rett syndrome is treated like it's completely different. even as we have severe autistics living with more issues some having died already at young ages that looked in far worse shape than mine child with rett syndrome. my nephews diagnosis was autism for so long, how can he have a form of autism that killed him? something else had to be going on. anyhow i just really miss him and he was so young and i wish we had more answers as to why we lost him. they would look for x linked mutations in immediate family members of someone diagnosed with rett syndrome not cousins though. so had my nephew been mine son he would have been looked over as they went through me as i have a diagnosis of autism since age twelve, i was non verbal until about age nine and i've got speech now. but they didn't check him out not even when he was dieing and there was nothing anyone can do. well i guess it doesn't matter really he's dead now anyhow and nothing will bring him back. Crabtail **************************************Check out AOL's list of 2007's hottest products. (http://money.aol.com/special/hot-products-2007?NCID=aoltop00030000000001) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 28, 2007 Report Share Posted November 28, 2007 Wow, it sounds like your family is just full of people with Rett Syndrome. I'm sorry about your nephew. I'm sure he had RS too because autism alone is not fatal and does not cause you to be in fragile health. I also suspect that I have Rett Syndrome, but not sure what benefit it would have to be tested since it is so expensive. I have high functioning autistic qualities...I spoke only a little to people I knew when I was young. I shook my head yes or no to communicate. I have major social problems even to this day. I also have scoliosis and neurological problems but don't have a tiny head. My daughter was originally thought to have CP since there was a c-section malpractice and she had problems since birth. She was not diagnosed until 2 1/2 and thats only because I read about RS on a web search and insisted that she be tested. Luckily my daughter's twin brother did not get RS. He is a healthy, normal little boy. Elaine > > > In a message dated 11/27/2007 10:26:01 P.M. Central Standard Time, > mimuful@... writes: > > Hi Crabtail- > > Sorry...I am behind on checking the group posts so just got this. My > daughter Sierra just turned 4. She has classic Rett Syndrome. Its on > the spectrum and she has some autism problems but none behavorial. It > is highly misdiagnosed as just autism or CP, but there are a lot more > medical problems associated then other ASDs. I hope every one in here > has had their autistic loved one tested for this, since it is so > misdiagnosed. Are you asking because you have a daughter with RS? > > Elaine, Sierra (4 Rett Syndrome) and twin brother Dakota > > > yes, mine daughter has it, but we also have eight autistics in our family. > my nephew died and he had autism and cp, they didn't look him over because he > was a boy. we also have some autistics with no behavioral problems. some of > our autistics don't look much different than mine dolphin. like two of mine > nephews have many of the same issues, gastro issues, seizures, scoliosis and > the such my nephew that died looked more like retts than mine daughter, as he > was in a wheelchair and tube fed and had bad seizures, he also weighed little, > very thin,he also, like mine dolphin, had a little head. that's like some of > us. some of us have macroencephaly big heads, and microencephaly small > heads. those of us with smaller heads have more medical and health issues. now > they've just gone through all of us taking blood and dna samples. my daughter > because of the family history and because she was a bit higher functioning was > diagnosed with just severe autism at age 2 it wasn't until she had a physical > regression that they checked for rett syndrome she wasn't diagnosed until > well until age three. my nephew was never checked for it because he was a boy > although he also had a severe physical regression. his diagnosis however was > childhood disintegrative disorder. we also had two girl cousins that died > young. one was a non verbal girl that was wheelchair bound who always had her > hands clasped and had bad physical issues and died at age fifteen. she clearly > had autistic issues although was not formerly diagnosed. her diagnosis was > mental retardation and a form of cp. but my nephews and wanda's cp looked very > rettlike. anyhow, he diagnosis was autism first, but that was never considered > to be life threatening, although we have had family members with versions of > autism that also left them medically fragile and categorized as living with > a life threatening condition they had such medical issues. my nephew died > after a spinal fusion to correct his severe scoliosis and he was very physically > fragile and highly medical. he also had teeth grinding and respiratory > issues. we have eight autistics from the most severe to higher functioning but the > rett syndrome is treated like it's completely different. even as we have > severe autistics living with more issues some having died already at young ages > that looked in far worse shape than mine child with rett syndrome. my nephews > diagnosis was autism for so long, how can he have a form of autism that > killed him? something else had to be going on. anyhow i just really miss him and > he was so young and i wish we had more answers as to why we lost him. they > would look for x linked mutations in immediate family members of someone > diagnosed with rett syndrome not cousins though. so had my nephew been mine son he > would have been looked over as they went through me as i have a diagnosis of > autism since age twelve, i was non verbal until about age nine and i've got > speech now. but they didn't check him out not even when he was dieing and > there was nothing anyone can do. well i guess it doesn't matter really he's dead > now anyhow and nothing will bring him back. > > Crabtail > > > > **************************************Check out AOL's list of 2007's hottest > products. > (http://money.aol.com/special/hot-products-2007? NCID=aoltop00030000000001) > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 28, 2007 Report Share Posted November 28, 2007 Wow, it sounds like your family is just full of people with Rett Syndrome. I'm sorry about your nephew. I'm sure he had RS too because autism alone is not fatal and does not cause you to be in fragile health. I also suspect that I have Rett Syndrome, but not sure what benefit it would have to be tested since it is so expensive. I have high functioning autistic qualities...I spoke only a little to people I knew when I was young. I shook my head yes or no to communicate. I have major social problems even to this day. I also have scoliosis and neurological problems but don't have a tiny head. My daughter was originally thought to have CP since there was a c-section malpractice and she had problems since birth. She was not diagnosed until 2 1/2 and thats only because I read about RS on a web search and insisted that she be tested. Luckily my daughter's twin brother did not get RS. He is a healthy, normal little boy. Elaine > > > In a message dated 11/27/2007 10:26:01 P.M. Central Standard Time, > mimuful@... writes: > > Hi Crabtail- > > Sorry...I am behind on checking the group posts so just got this. My > daughter Sierra just turned 4. She has classic Rett Syndrome. Its on > the spectrum and she has some autism problems but none behavorial. It > is highly misdiagnosed as just autism or CP, but there are a lot more > medical problems associated then other ASDs. I hope every one in here > has had their autistic loved one tested for this, since it is so > misdiagnosed. Are you asking because you have a daughter with RS? > > Elaine, Sierra (4 Rett Syndrome) and twin brother Dakota > > > yes, mine daughter has it, but we also have eight autistics in our family. > my nephew died and he had autism and cp, they didn't look him over because he > was a boy. we also have some autistics with no behavioral problems. some of > our autistics don't look much different than mine dolphin. like two of mine > nephews have many of the same issues, gastro issues, seizures, scoliosis and > the such my nephew that died looked more like retts than mine daughter, as he > was in a wheelchair and tube fed and had bad seizures, he also weighed little, > very thin,he also, like mine dolphin, had a little head. that's like some of > us. some of us have macroencephaly big heads, and microencephaly small > heads. those of us with smaller heads have more medical and health issues. now > they've just gone through all of us taking blood and dna samples. my daughter > because of the family history and because she was a bit higher functioning was > diagnosed with just severe autism at age 2 it wasn't until she had a physical > regression that they checked for rett syndrome she wasn't diagnosed until > well until age three. my nephew was never checked for it because he was a boy > although he also had a severe physical regression. his diagnosis however was > childhood disintegrative disorder. we also had two girl cousins that died > young. one was a non verbal girl that was wheelchair bound who always had her > hands clasped and had bad physical issues and died at age fifteen. she clearly > had autistic issues although was not formerly diagnosed. her diagnosis was > mental retardation and a form of cp. but my nephews and wanda's cp looked very > rettlike. anyhow, he diagnosis was autism first, but that was never considered > to be life threatening, although we have had family members with versions of > autism that also left them medically fragile and categorized as living with > a life threatening condition they had such medical issues. my nephew died > after a spinal fusion to correct his severe scoliosis and he was very physically > fragile and highly medical. he also had teeth grinding and respiratory > issues. we have eight autistics from the most severe to higher functioning but the > rett syndrome is treated like it's completely different. even as we have > severe autistics living with more issues some having died already at young ages > that looked in far worse shape than mine child with rett syndrome. my nephews > diagnosis was autism for so long, how can he have a form of autism that > killed him? something else had to be going on. anyhow i just really miss him and > he was so young and i wish we had more answers as to why we lost him. they > would look for x linked mutations in immediate family members of someone > diagnosed with rett syndrome not cousins though. so had my nephew been mine son he > would have been looked over as they went through me as i have a diagnosis of > autism since age twelve, i was non verbal until about age nine and i've got > speech now. but they didn't check him out not even when he was dieing and > there was nothing anyone can do. well i guess it doesn't matter really he's dead > now anyhow and nothing will bring him back. > > Crabtail > > > > **************************************Check out AOL's list of 2007's hottest > products. > (http://money.aol.com/special/hot-products-2007? NCID=aoltop00030000000001) > > > Quote Link to comment Share on other sites More sharing options...
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