Guest guest Posted January 10, 2003 Report Share Posted January 10, 2003 On Fri, 10 Jan 2003 21:25:19 +0100, " guillermo guillermo " SIRINGO34@...> spoke thusly: >por favor agradeceria mucho ke me enviasen los mensajes en ESPAÑOL vivo en >Madrid, españa y no se me da bien el ingles > >me operan a finales de enero del 2003 de una craneotomia descompresiva de >fosa posterior, actualmente tengo el 60% de los sintomas del arnold chiari y >siringomielia y miedo a la intervención Babel Fish Translation, In English: Help please agradeceria ke sent the messages to me in alive SPANISH in Madrid, Spain much and English does not occur me well they operate to me at the end of January of the 2003 of one craneotomia descompresiva one of later grave, at the moment I have 60% of sintomas of arnold chiari and siringomielia and fear to the intervention (that is a pretty poor translation--but I thought it might help) administrator/creator/moderator alt.med.fibromyalgia.recovery.info (moderated) alt.support.depression.manic.moderated to email me from news groups, just remove the Z. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 31, 2003 Report Share Posted January 31, 2003 Good luck w/ the depression meds!! They are so necessary for many of us - unfortunately some of them play havoc with our weight. I never lost another pound after going on Paxil, and as a matter of fact have gained weight back. I am still fighting though. Be vigilant kiddo!! Amber/FL (unknown) In short, i lost 5.4 pounds in 3 days and i'm severly depressed. he put me back on depression meds and sees me again on March 6th at 3pm. Protein intake should be 40g, but i'm keeping it at 100-120 until i lose the last 13.2 pounds. love amber 319/170/183.6/178.4 Check out our website at: http://www.geocities.com/proteinpervs/ For recipe information go to our database: http://groups.yahoo.com/group/OSSG-Protein/database Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 5, 2003 Report Share Posted February 5, 2003 Hi WJC, I am amazed (and jealous) when I read about people that are diagnosed, have surgery, and go on to live their lives. It does happen :-) There are a lot of people, like you, that it sometimes takes years to find a diagnosis. Chiari tends to be progressive. Insidiously progressive. My daughter is our little Chiarian, and we had to learn the hard way it is up to us to advocate. Follow-up calls to doctors, specialists, radiologists, insurance. Hand-carrying films to appointments. Asking lots of questions. Keeping a journal. Getting copies of summaries & medical reports to keep for ourselves (it's often surprising what we haven't been told). I used to want the doctor to like me. I used to want a doctor with a decent, personable manner. Now, I want a doctor that listens, really listens. Now, I want a doctor that is knowledgeable in Chiari related issues. (Sometimes they tolerate me & sometimes they are personable, LOL, that is only a bonus). You are not alone in your frustration. And never, never, never give up! You are so worth it! Best wishes, , tired mom to - 6 yrs. old decompressed Aug. 2000, tethered cord surgery Jan. 2003 (unknown) > I wanted to get a little feedback from the group if I could. I went > to the neurologist back in December of last year. He conducted some > tests and said that he wanted to have a MRI done on my brain. From > what little he had seen and our interview, he felt I might have a > brain issue. As HMO's go, I did not hear back from my doctor. Last > week my wife was talking to a co-worker of her's. My wife's friend > was describing the surgery that her mother had recently had > (decompression surgery) and they discussed the symptoms and > problems. This sent my wife's antena up a bit and she asked her > friend about a website. Suddenly I was turned on to the WACMA > website. I did a lot of reading and it tended to frighten me.....all > of it sounded WAY to familiar. I called my regular Dr's office > to " get their attention " about my lack of MRI. The office called > back within the hour and had it scheduled for next Monday. I asked > the nurse if she had ever heard of ACM. She stated she had not heard > of it until she re-read the neurologist's letter requesting the MRI. > To make a long story short (too late), my question is, has everyone > been given the run-around about this? I have been having > increasingly significant problems for 7 years. I have been mis- > diagnosed so many times, that I feel like giving up hope. As weird as > it sounds, I hope that ACM is the issue, at least then I would know > what the problems is and that it can be fixed. Am I alone in this > type of frusteration? > > Thanks......WJC > > > Help section: http://www.yahoogroups.com/help/ > > NOTE: NCC refers to posts with No Chiari Content > > To Unsubscribe Yourself: > chiari-unsubscribe > > WACMA Home: Http://www.wacma.com > > WACMA Online Group: http://groups.yahoo.com/group/chiari/ > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 5, 2003 Report Share Posted February 5, 2003 Hi WJC, I am amazed (and jealous) when I read about people that are diagnosed, have surgery, and go on to live their lives. It does happen :-) There are a lot of people, like you, that it sometimes takes years to find a diagnosis. Chiari tends to be progressive. Insidiously progressive. My daughter is our little Chiarian, and we had to learn the hard way it is up to us to advocate. Follow-up calls to doctors, specialists, radiologists, insurance. Hand-carrying films to appointments. Asking lots of questions. Keeping a journal. Getting copies of summaries & medical reports to keep for ourselves (it's often surprising what we haven't been told). I used to want the doctor to like me. I used to want a doctor with a decent, personable manner. Now, I want a doctor that listens, really listens. Now, I want a doctor that is knowledgeable in Chiari related issues. (Sometimes they tolerate me & sometimes they are personable, LOL, that is only a bonus). You are not alone in your frustration. And never, never, never give up! You are so worth it! Best wishes, , tired mom to - 6 yrs. old decompressed Aug. 2000, tethered cord surgery Jan. 2003 (unknown) > I wanted to get a little feedback from the group if I could. I went > to the neurologist back in December of last year. He conducted some > tests and said that he wanted to have a MRI done on my brain. From > what little he had seen and our interview, he felt I might have a > brain issue. As HMO's go, I did not hear back from my doctor. Last > week my wife was talking to a co-worker of her's. My wife's friend > was describing the surgery that her mother had recently had > (decompression surgery) and they discussed the symptoms and > problems. This sent my wife's antena up a bit and she asked her > friend about a website. Suddenly I was turned on to the WACMA > website. I did a lot of reading and it tended to frighten me.....all > of it sounded WAY to familiar. I called my regular Dr's office > to " get their attention " about my lack of MRI. The office called > back within the hour and had it scheduled for next Monday. I asked > the nurse if she had ever heard of ACM. She stated she had not heard > of it until she re-read the neurologist's letter requesting the MRI. > To make a long story short (too late), my question is, has everyone > been given the run-around about this? I have been having > increasingly significant problems for 7 years. I have been mis- > diagnosed so many times, that I feel like giving up hope. As weird as > it sounds, I hope that ACM is the issue, at least then I would know > what the problems is and that it can be fixed. Am I alone in this > type of frusteration? > > Thanks......WJC > > > Help section: http://www.yahoogroups.com/help/ > > NOTE: NCC refers to posts with No Chiari Content > > To Unsubscribe Yourself: > chiari-unsubscribe > > WACMA Home: Http://www.wacma.com > > WACMA Online Group: http://groups.yahoo.com/group/chiari/ > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 5, 2003 Report Share Posted February 5, 2003 Hi WJC, I am amazed (and jealous) when I read about people that are diagnosed, have surgery, and go on to live their lives. It does happen :-) There are a lot of people, like you, that it sometimes takes years to find a diagnosis. Chiari tends to be progressive. Insidiously progressive. My daughter is our little Chiarian, and we had to learn the hard way it is up to us to advocate. Follow-up calls to doctors, specialists, radiologists, insurance. Hand-carrying films to appointments. Asking lots of questions. Keeping a journal. Getting copies of summaries & medical reports to keep for ourselves (it's often surprising what we haven't been told). I used to want the doctor to like me. I used to want a doctor with a decent, personable manner. Now, I want a doctor that listens, really listens. Now, I want a doctor that is knowledgeable in Chiari related issues. (Sometimes they tolerate me & sometimes they are personable, LOL, that is only a bonus). You are not alone in your frustration. And never, never, never give up! You are so worth it! Best wishes, , tired mom to - 6 yrs. old decompressed Aug. 2000, tethered cord surgery Jan. 2003 (unknown) > I wanted to get a little feedback from the group if I could. I went > to the neurologist back in December of last year. He conducted some > tests and said that he wanted to have a MRI done on my brain. From > what little he had seen and our interview, he felt I might have a > brain issue. As HMO's go, I did not hear back from my doctor. Last > week my wife was talking to a co-worker of her's. My wife's friend > was describing the surgery that her mother had recently had > (decompression surgery) and they discussed the symptoms and > problems. This sent my wife's antena up a bit and she asked her > friend about a website. Suddenly I was turned on to the WACMA > website. I did a lot of reading and it tended to frighten me.....all > of it sounded WAY to familiar. I called my regular Dr's office > to " get their attention " about my lack of MRI. The office called > back within the hour and had it scheduled for next Monday. I asked > the nurse if she had ever heard of ACM. She stated she had not heard > of it until she re-read the neurologist's letter requesting the MRI. > To make a long story short (too late), my question is, has everyone > been given the run-around about this? I have been having > increasingly significant problems for 7 years. I have been mis- > diagnosed so many times, that I feel like giving up hope. As weird as > it sounds, I hope that ACM is the issue, at least then I would know > what the problems is and that it can be fixed. Am I alone in this > type of frusteration? > > Thanks......WJC > > > Help section: http://www.yahoogroups.com/help/ > > NOTE: NCC refers to posts with No Chiari Content > > To Unsubscribe Yourself: > chiari-unsubscribe > > WACMA Home: Http://www.wacma.com > > WACMA Online Group: http://groups.yahoo.com/group/chiari/ > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 20, 2003 Report Share Posted February 20, 2003 Hi Lost our Keys again, My name is Cheryl and I'm the Mom to 5 year old triplets, , , and . is my RSS son plus he has a sensorineural hearing loss and uses the aid of a Cochlear Implant to hear. He does not have Mondini, however, I do know of other children (Non-RSS) that do and have received a cochlear implant to help them hear. One child I know is doing great and other is not doing as well with the implant. Anyway, if you would like to chat more, please contact me at stslane@.... Cheryl Slane (unknown) > I am the mom of a 6 year old RSS boy. This is only the second time I > have posted something. My son has typical RSS features and health > issues, but he is also having several health related issues that are > not typically RSS. The reason for my message is to find out if any > other RSS kids have any of these other health problems that my son > seems to be showing. The main ones are hydrocephalus (treated with a > VP shunt), Mondini dysplasia (deformity of the cochlea), fluctuating > hearing loss, a high jugular bulb (his jugular vein loops through his > ear canal), " absence " seizures, and Asbergers syndrome (high > functiong autism). The seizures and the Asberger's syndrome are not > officially diagnosed, but I, as well as his neurologist are fairly > certain, an EEG is scheduled and paperwork for the autism clinic is > done. I am jsut trying to get more information. Thank you, > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 20, 2003 Report Share Posted February 20, 2003 Just to add my thoughts and information, which may, I hope, help you feel better, my son Maxwell (will be 15 in July) has RSS, a slight hearing loss in his left ear, Tourette Syndrome, various components of PDD and ADHD. He has pronated feet (somewhat corrected last year with surgery, but he will never be a runner), a bit of kyphosis (a curvature of the spine that goes the opposite of scoliosis), anxiety, depression, early puberty and who knows what else. The list is too long!!! BUT I am happy to say that he is a great kid with lots of compassion, very social when he wants to be (especially with Yugioh and Gameboy Advance) and a good student. I know you have a lot on your plate right now, but once the testing is done and you can sort things out, you will be able to see a bit more clearly. And certainly use us on this listserve for support. Somewhere, someone along the line has experienced at least part of what you are going through. Know that we all care. Jodi Teen Networking Coordinator MAGIC Foundation Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 20, 2003 Report Share Posted February 20, 2003 Just to add my thoughts and information, which may, I hope, help you feel better, my son Maxwell (will be 15 in July) has RSS, a slight hearing loss in his left ear, Tourette Syndrome, various components of PDD and ADHD. He has pronated feet (somewhat corrected last year with surgery, but he will never be a runner), a bit of kyphosis (a curvature of the spine that goes the opposite of scoliosis), anxiety, depression, early puberty and who knows what else. The list is too long!!! BUT I am happy to say that he is a great kid with lots of compassion, very social when he wants to be (especially with Yugioh and Gameboy Advance) and a good student. I know you have a lot on your plate right now, but once the testing is done and you can sort things out, you will be able to see a bit more clearly. And certainly use us on this listserve for support. Somewhere, someone along the line has experienced at least part of what you are going through. Know that we all care. Jodi Teen Networking Coordinator MAGIC Foundation Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 21, 2003 Report Share Posted February 21, 2003 Hi:-) I will respond in greater detail to your e-mail in a few days. My daughter is currently hospitalized and neurology is looking at her in detail. She just turned two and we are trying to figure out what effects a current illness has had on her neurological system and it will still be a while before she is off of antiseizure medicine, Phenobarbital, and she is still having some with drawl from other sedation drugs. Neurology has also put her on a drug called resperitol (sp) to control " movements " She does have benign hydrocephalus but, big heads run in both mine and my husband's family. They did not have the technology to diagnosis this a generation ago. Janelle's ventricles have shown some enlargement since her last MRI. The current attending neurologist is going to review her case at a meeting with 20 other pediatric neurologists and surgeons on Monday. It is a regularly scheduled meeting the Chicago area ped Nuero doctors have. I will find out what they have to say on Tuesday. My daughter has been very ill which may have caused some issues but the nurologist is very optimistic :-)!!! I will keep in touch. -- Jovanovich ****Please note - our NEW e-mail address laura@... " lostourkeysagain@...> Reply-To: RSS-Support Date: Thu, 20 Feb 2003 15:29:30 -0000 To: RSS-Support Subject: (unknown) Resent-From: laura@... Resent-To: bugwilder@... Resent-Date: Thu, 20 Feb 2003 09:32:48 -0600 I am the mom of a 6 year old RSS boy. This is only the second time I have posted something. My son has typical RSS features and health issues, but he is also having several health related issues that are not typically RSS. The reason for my message is to find out if any other RSS kids have any of these other health problems that my son seems to be showing. The main ones are hydrocephalus (treated with a VP shunt), Mondini dysplasia (deformity of the cochlea), fluctuating hearing loss, a high jugular bulb (his jugular vein loops through his ear canal), " absence " seizures, and Asbergers syndrome (high functiong autism). The seizures and the Asberger's syndrome are not officially diagnosed, but I, as well as his neurologist are fairly certain, an EEG is scheduled and paperwork for the autism clinic is done. I am jsut trying to get more information. Thank you, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 21, 2003 Report Share Posted February 21, 2003 Hi:-) I will respond in greater detail to your e-mail in a few days. My daughter is currently hospitalized and neurology is looking at her in detail. She just turned two and we are trying to figure out what effects a current illness has had on her neurological system and it will still be a while before she is off of antiseizure medicine, Phenobarbital, and she is still having some with drawl from other sedation drugs. Neurology has also put her on a drug called resperitol (sp) to control " movements " She does have benign hydrocephalus but, big heads run in both mine and my husband's family. They did not have the technology to diagnosis this a generation ago. Janelle's ventricles have shown some enlargement since her last MRI. The current attending neurologist is going to review her case at a meeting with 20 other pediatric neurologists and surgeons on Monday. It is a regularly scheduled meeting the Chicago area ped Nuero doctors have. I will find out what they have to say on Tuesday. My daughter has been very ill which may have caused some issues but the nurologist is very optimistic :-)!!! I will keep in touch. -- Jovanovich ****Please note - our NEW e-mail address laura@... " lostourkeysagain@...> Reply-To: RSS-Support Date: Thu, 20 Feb 2003 15:29:30 -0000 To: RSS-Support Subject: (unknown) Resent-From: laura@... Resent-To: bugwilder@... Resent-Date: Thu, 20 Feb 2003 09:32:48 -0600 I am the mom of a 6 year old RSS boy. This is only the second time I have posted something. My son has typical RSS features and health issues, but he is also having several health related issues that are not typically RSS. The reason for my message is to find out if any other RSS kids have any of these other health problems that my son seems to be showing. The main ones are hydrocephalus (treated with a VP shunt), Mondini dysplasia (deformity of the cochlea), fluctuating hearing loss, a high jugular bulb (his jugular vein loops through his ear canal), " absence " seizures, and Asbergers syndrome (high functiong autism). The seizures and the Asberger's syndrome are not officially diagnosed, but I, as well as his neurologist are fairly certain, an EEG is scheduled and paperwork for the autism clinic is done. I am jsut trying to get more information. Thank you, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 21, 2003 Report Share Posted February 21, 2003 Hi:-) I will respond in greater detail to your e-mail in a few days. My daughter is currently hospitalized and neurology is looking at her in detail. She just turned two and we are trying to figure out what effects a current illness has had on her neurological system and it will still be a while before she is off of antiseizure medicine, Phenobarbital, and she is still having some with drawl from other sedation drugs. Neurology has also put her on a drug called resperitol (sp) to control " movements " She does have benign hydrocephalus but, big heads run in both mine and my husband's family. They did not have the technology to diagnosis this a generation ago. Janelle's ventricles have shown some enlargement since her last MRI. The current attending neurologist is going to review her case at a meeting with 20 other pediatric neurologists and surgeons on Monday. It is a regularly scheduled meeting the Chicago area ped Nuero doctors have. I will find out what they have to say on Tuesday. My daughter has been very ill which may have caused some issues but the nurologist is very optimistic :-)!!! I will keep in touch. -- Jovanovich ****Please note - our NEW e-mail address laura@... " lostourkeysagain@...> Reply-To: RSS-Support Date: Thu, 20 Feb 2003 15:29:30 -0000 To: RSS-Support Subject: (unknown) Resent-From: laura@... Resent-To: bugwilder@... Resent-Date: Thu, 20 Feb 2003 09:32:48 -0600 I am the mom of a 6 year old RSS boy. This is only the second time I have posted something. My son has typical RSS features and health issues, but he is also having several health related issues that are not typically RSS. The reason for my message is to find out if any other RSS kids have any of these other health problems that my son seems to be showing. The main ones are hydrocephalus (treated with a VP shunt), Mondini dysplasia (deformity of the cochlea), fluctuating hearing loss, a high jugular bulb (his jugular vein loops through his ear canal), " absence " seizures, and Asbergers syndrome (high functiong autism). The seizures and the Asberger's syndrome are not officially diagnosed, but I, as well as his neurologist are fairly certain, an EEG is scheduled and paperwork for the autism clinic is done. I am jsut trying to get more information. Thank you, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 5, 2003 Report Share Posted March 5, 2003 I will be their Valentin NJ, Surgeries 1999,2000,2001 mark roper wrote: >hey everyone >whose going to the new york to the a-s-a-p convention in july >-mark > > > >_________________________________________________________________ >Hotmail now available on Australian mobile phones. Go to >http://ninemsn.com.au/mobilecentral/hotmail_mobile.asp > > > >Help section: http://www.yahoogroups.com/help/ > >NOTE: NCC refers to posts with No Chiari Content > >To Unsubscribe Yourself: >chiari-unsubscribe > >WACMA Home: Http://www.wacma.com > >WACMA Online Group: http://groups.yahoo.com/group/chiari/ > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 5, 2003 Report Share Posted March 5, 2003 I will be their Valentin NJ, Surgeries 1999,2000,2001 mark roper wrote: >hey everyone >whose going to the new york to the a-s-a-p convention in july >-mark > > > >_________________________________________________________________ >Hotmail now available on Australian mobile phones. Go to >http://ninemsn.com.au/mobilecentral/hotmail_mobile.asp > > > >Help section: http://www.yahoogroups.com/help/ > >NOTE: NCC refers to posts with No Chiari Content > >To Unsubscribe Yourself: >chiari-unsubscribe > >WACMA Home: Http://www.wacma.com > >WACMA Online Group: http://groups.yahoo.com/group/chiari/ > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 5, 2003 Report Share Posted March 5, 2003 I will be their Valentin NJ, Surgeries 1999,2000,2001 mark roper wrote: >hey everyone >whose going to the new york to the a-s-a-p convention in july >-mark > > > >_________________________________________________________________ >Hotmail now available on Australian mobile phones. Go to >http://ninemsn.com.au/mobilecentral/hotmail_mobile.asp > > > >Help section: http://www.yahoogroups.com/help/ > >NOTE: NCC refers to posts with No Chiari Content > >To Unsubscribe Yourself: >chiari-unsubscribe > >WACMA Home: Http://www.wacma.com > >WACMA Online Group: http://groups.yahoo.com/group/chiari/ > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 13, 2003 Report Share Posted April 13, 2003 I know exacly what you are going through. Before we went to NY to see Dr. Harbison every doctor that we went to would accuse me of neglect. It got to the point that Metro called children services on me. We had a very rude lady coming to our house when ever she felt like it asking so many personal questions. I also went to an attorney to see if we could sue the doctor that delivered . The cord was wrapped around his neck five times. He also asked me what causes RSS. I wasn't sure either so I simply said that no one knows what causes it. I showed him some papers off the internet about the syndrome to help him understand. Turned out that I couldn't sue because the cord couldn't have been proved to cause all of his problems. BS. I know first hand what its like when people look at you like you are the worse mother around. All I can say is to ignore them. You are better than them because you love your child with problems. Other people might put them up for adoption. Hang in there. Sooner or later people will understand what your going through. I know I sure do. Liz (mother to 12lb 6oz 16months) > >Reply-To: RSS-Support >To: RSS-Support >Subject: (unknown) >Date: Sat, 12 Apr 2003 08:27:21 -0000 > >I need to ask a question. It is a sensitive subject but I need some >feedback. I contacted an attorney with Disability Law Services this >last week. He basically treated me like a number and spent 10 >minutes asking me questions regarding Zoe and why we are having >problems getting services. Anyway, he asked me what the nature of >Zoe's syndrome is. I didn't understand at first. Then he asked me >if it was inherited or environmental. Well, from what I know RSS >(for the most part)is not inherited so I was confused about the >environmental part. He said that environmental means that it could >have been prevented. He listed the following causes: drugs, >drinking, household cleaners... >I just couldn't think straight. After all of the doctors we have >seen - not one said that I could have prevented this! I didn't >drink, do drugs, or use household cleaning products that I hadn't >used in my first pregnancy. I am so offended that I don't even want >this person to represent us. To imply that I did something that >caused my daughter to have RSS...I won't even use the words I wanted >to say. >What do you think of this? How do you explain why or how? This man >must have experience with different types of sydromes/disorders given >his job but why would he say such a thing? I have kept this to >myself but it is just eating me up. I'm a little sensitive given >that people look at me like I don't feed my daughter...but this is >too much. > > > _________________________________________________________________ Add photos to your messages with MSN 8. Get 2 months FREE*. http://join.msn.com/?page=features/featuredemail Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 13, 2003 Report Share Posted April 13, 2003 Liz, Are you planning on bringing to the convention? I know we would all like to meet him and you! Pattie > I know exacly what you are going through. Before we went to NY to see Dr. > Harbison every doctor that we went to would accuse me of neglect. It got to > the point that Metro called children services on me. We had a very rude lady > coming to our house when ever she felt like it asking so many personal > questions. I also went to an attorney to see if we could sue the doctor that > delivered . The cord was wrapped around his neck five times. He also > asked me what causes RSS. I wasn't sure either so I simply said that no one > knows what causes it. I showed him some papers off the internet about the > syndrome to help him understand. Turned out that I couldn't sue because the > cord couldn't have been proved to cause all of his problems. BS. I know > first hand what its like when people look at you like you are the worse > mother around. All I can say is to ignore them. You are better than them > because you love your child with problems. Other people might put them up > for adoption. Hang in there. Sooner or later people will understand what > your going through. I know I sure do. > > Liz (mother to 12lb 6oz 16months) > > > > > > > >From: " alaskarss " > >Reply-To: RSS-Support > >To: RSS-Support > >Subject: (unknown) > >Date: Sat, 12 Apr 2003 08:27:21 -0000 > > > >I need to ask a question. It is a sensitive subject but I need some > >feedback. I contacted an attorney with Disability Law Services this > >last week. He basically treated me like a number and spent 10 > >minutes asking me questions regarding Zoe and why we are having > >problems getting services. Anyway, he asked me what the nature of > >Zoe's syndrome is. I didn't understand at first. Then he asked me > >if it was inherited or environmental. Well, from what I know RSS > >(for the most part)is not inherited so I was confused about the > >environmental part. He said that environmental means that it could > >have been prevented. He listed the following causes: drugs, > >drinking, household cleaners... > >I just couldn't think straight. After all of the doctors we have > >seen - not one said that I could have prevented this! I didn't > >drink, do drugs, or use household cleaning products that I hadn't > >used in my first pregnancy. I am so offended that I don't even want > >this person to represent us. To imply that I did something that > >caused my daughter to have RSS...I won't even use the words I wanted > >to say. > >What do you think of this? How do you explain why or how? This man > >must have experience with different types of sydromes/disorders given > >his job but why would he say such a thing? I have kept this to > >myself but it is just eating me up. I'm a little sensitive given > >that people look at me like I don't feed my daughter...but this is > >too much. > > > > > > > > > _________________________________________________________________ > Add photos to your messages with MSN 8. Get 2 months FREE*. > http://join.msn.com/?page=features/featuredemail Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 14, 2003 Report Share Posted April 14, 2003 Pattie, Im not sure right now. I know that s other grandomother and his father want to go but my mother and I are not sure yet. We are not sure if we can finacially, emotionally, and physically get there. We are still debating but we will tell you when we find out. Liz (mother to 16mo. 12lb 6oz.) > >Reply-To: RSS-Support >To: RSS-Support >Subject: Re: (unknown) >Date: Mon, 14 Apr 2003 02:50:57 -0000 > >Liz, > > Are you planning on bringing to the convention? I know we >would all like to meet him and you! > >Pattie > > > > I know exacly what you are going through. Before we went to NY to >see Dr. > > Harbison every doctor that we went to would accuse me of neglect. >It got to > > the point that Metro called children services on me. We had a very >rude lady > > coming to our house when ever she felt like it asking so many >personal > > questions. I also went to an attorney to see if we could sue the >doctor that > > delivered . The cord was wrapped around his neck five >times. He also > > asked me what causes RSS. I wasn't sure either so I simply said >that no one > > knows what causes it. I showed him some papers off the internet >about the > > syndrome to help him understand. Turned out that I couldn't sue >because the > > cord couldn't have been proved to cause all of his problems. BS. I >know > > first hand what its like when people look at you like you are the >worse > > mother around. All I can say is to ignore them. You are better >than them > > because you love your child with problems. Other people might put >them up > > for adoption. Hang in there. Sooner or later people will >understand what > > your going through. I know I sure do. > > > > Liz (mother to 12lb 6oz 16months) > > > > > > > > > > > > > > >From: " alaskarss " > > >Reply-To: RSS-Support > > >To: RSS-Support > > >Subject: (unknown) > > >Date: Sat, 12 Apr 2003 08:27:21 -0000 > > > > > >I need to ask a question. It is a sensitive subject but I need >some > > >feedback. I contacted an attorney with Disability Law Services >this > > >last week. He basically treated me like a number and spent 10 > > >minutes asking me questions regarding Zoe and why we are having > > >problems getting services. Anyway, he asked me what the nature of > > >Zoe's syndrome is. I didn't understand at first. Then he asked >me > > >if it was inherited or environmental. Well, from what I know RSS > > >(for the most part)is not inherited so I was confused about the > > >environmental part. He said that environmental means that it >could > > >have been prevented. He listed the following causes: drugs, > > >drinking, household cleaners... > > >I just couldn't think straight. After all of the doctors we have > > >seen - not one said that I could have prevented this! I didn't > > >drink, do drugs, or use household cleaning products that I hadn't > > >used in my first pregnancy. I am so offended that I don't even >want > > >this person to represent us. To imply that I did something that > > >caused my daughter to have RSS...I won't even use the words I >wanted > > >to say. > > >What do you think of this? How do you explain why or how? This >man > > >must have experience with different types of sydromes/disorders >given > > >his job but why would he say such a thing? I have kept this to > > >myself but it is just eating me up. I'm a little sensitive given > > >that people look at me like I don't feed my daughter...but this is > > >too much. > > > > > > > > > > > > > > > _________________________________________________________________ > > Add photos to your messages with MSN 8. Get 2 months FREE*. > > http://join.msn.com/?page=features/featuredemail > _________________________________________________________________ Help STOP SPAM with the new MSN 8 and get 2 months FREE* http://join.msn.com/?page=features/junkmail Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 14, 2003 Report Share Posted April 14, 2003 Liz, It really is a great time to get encouraged and meet all ages of great RSS kids. There are many ways to get help financially. I think the emotional side of it will take care of itself when you get there, it's a BLAST! As far as physically, I'm not sure what to say there. I'm sure you wouldn't regret coming. We all look forward to meeting You and . Pattie > > > I know exacly what you are going through. Before we went to NY to > >see Dr. > > > Harbison every doctor that we went to would accuse me of neglect. > >It got to > > > the point that Metro called children services on me. We had a very > >rude lady > > > coming to our house when ever she felt like it asking so many > >personal > > > questions. I also went to an attorney to see if we could sue the > >doctor that > > > delivered . The cord was wrapped around his neck five > >times. He also > > > asked me what causes RSS. I wasn't sure either so I simply said > >that no one > > > knows what causes it. I showed him some papers off the internet > >about the > > > syndrome to help him understand. Turned out that I couldn't sue > >because the > > > cord couldn't have been proved to cause all of his problems. BS. I > >know > > > first hand what its like when people look at you like you are the > >worse > > > mother around. All I can say is to ignore them. You are better > >than them > > > because you love your child with problems. Other people might put > >them up > > > for adoption. Hang in there. Sooner or later people will > >understand what > > > your going through. I know I sure do. > > > > > > Liz (mother to 12lb 6oz 16months) > > > > > > > > > > > > > > > > > > > > > >From: " alaskarss " > > > >Reply-To: RSS-Support > > > >To: RSS-Support > > > >Subject: (unknown) > > > >Date: Sat, 12 Apr 2003 08:27:21 -0000 > > > > > > > >I need to ask a question. It is a sensitive subject but I need > >some > > > >feedback. I contacted an attorney with Disability Law Services > >this > > > >last week. He basically treated me like a number and spent 10 > > > >minutes asking me questions regarding Zoe and why we are having > > > >problems getting services. Anyway, he asked me what the nature of > > > >Zoe's syndrome is. I didn't understand at first. Then he asked > >me > > > >if it was inherited or environmental. Well, from what I know RSS > > > >(for the most part)is not inherited so I was confused about the > > > >environmental part. He said that environmental means that it > >could > > > >have been prevented. He listed the following causes: drugs, > > > >drinking, household cleaners... > > > >I just couldn't think straight. After all of the doctors we have > > > >seen - not one said that I could have prevented this! I didn't > > > >drink, do drugs, or use household cleaning products that I hadn't > > > >used in my first pregnancy. I am so offended that I don't even > >want > > > >this person to represent us. To imply that I did something that > > > >caused my daughter to have RSS...I won't even use the words I > >wanted > > > >to say. > > > >What do you think of this? How do you explain why or how? This > >man > > > >must have experience with different types of sydromes/disorders > >given > > > >his job but why would he say such a thing? I have kept this to > > > >myself but it is just eating me up. I'm a little sensitive given > > > >that people look at me like I don't feed my daughter...but this is > > > >too much. > > > > > > > > > > > > > > > > > > > > > _________________________________________________________________ > > > Add photos to your messages with MSN 8. Get 2 months FREE*. > > > http://join.msn.com/?page=features/featuredemail > > > > > _________________________________________________________________ > Help STOP SPAM with the new MSN 8 and get 2 months FREE* > http://join.msn.com/?page=features/junkmail Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 14, 2003 Report Share Posted April 14, 2003 Liz, It really is a great time to get encouraged and meet all ages of great RSS kids. There are many ways to get help financially. I think the emotional side of it will take care of itself when you get there, it's a BLAST! As far as physically, I'm not sure what to say there. I'm sure you wouldn't regret coming. We all look forward to meeting You and . Pattie > > > I know exacly what you are going through. Before we went to NY to > >see Dr. > > > Harbison every doctor that we went to would accuse me of neglect. > >It got to > > > the point that Metro called children services on me. We had a very > >rude lady > > > coming to our house when ever she felt like it asking so many > >personal > > > questions. I also went to an attorney to see if we could sue the > >doctor that > > > delivered . The cord was wrapped around his neck five > >times. He also > > > asked me what causes RSS. I wasn't sure either so I simply said > >that no one > > > knows what causes it. I showed him some papers off the internet > >about the > > > syndrome to help him understand. Turned out that I couldn't sue > >because the > > > cord couldn't have been proved to cause all of his problems. BS. I > >know > > > first hand what its like when people look at you like you are the > >worse > > > mother around. All I can say is to ignore them. You are better > >than them > > > because you love your child with problems. Other people might put > >them up > > > for adoption. Hang in there. Sooner or later people will > >understand what > > > your going through. I know I sure do. > > > > > > Liz (mother to 12lb 6oz 16months) > > > > > > > > > > > > > > > > > > > > > >From: " alaskarss " > > > >Reply-To: RSS-Support > > > >To: RSS-Support > > > >Subject: (unknown) > > > >Date: Sat, 12 Apr 2003 08:27:21 -0000 > > > > > > > >I need to ask a question. It is a sensitive subject but I need > >some > > > >feedback. I contacted an attorney with Disability Law Services > >this > > > >last week. He basically treated me like a number and spent 10 > > > >minutes asking me questions regarding Zoe and why we are having > > > >problems getting services. Anyway, he asked me what the nature of > > > >Zoe's syndrome is. I didn't understand at first. Then he asked > >me > > > >if it was inherited or environmental. Well, from what I know RSS > > > >(for the most part)is not inherited so I was confused about the > > > >environmental part. He said that environmental means that it > >could > > > >have been prevented. He listed the following causes: drugs, > > > >drinking, household cleaners... > > > >I just couldn't think straight. After all of the doctors we have > > > >seen - not one said that I could have prevented this! I didn't > > > >drink, do drugs, or use household cleaning products that I hadn't > > > >used in my first pregnancy. I am so offended that I don't even > >want > > > >this person to represent us. To imply that I did something that > > > >caused my daughter to have RSS...I won't even use the words I > >wanted > > > >to say. > > > >What do you think of this? How do you explain why or how? This > >man > > > >must have experience with different types of sydromes/disorders > >given > > > >his job but why would he say such a thing? I have kept this to > > > >myself but it is just eating me up. I'm a little sensitive given > > > >that people look at me like I don't feed my daughter...but this is > > > >too much. > > > > > > > > > > > > > > > > > > > > > _________________________________________________________________ > > > Add photos to your messages with MSN 8. Get 2 months FREE*. > > > http://join.msn.com/?page=features/featuredemail > > > > > _________________________________________________________________ > Help STOP SPAM with the new MSN 8 and get 2 months FREE* > http://join.msn.com/?page=features/junkmail Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 25, 2003 Report Share Posted April 25, 2003 I HAD BOTOX!!!! I can't believe it I had to look at the senders email address to make sure I didn't write this email and forget. (forgetting is one of the things I do a lot) The first time I had botox was about 1 month ago, 6 months post op. and i will have it again in two weeks. The doctor gave it to me because I had these massive headaches after surgery (weren't there b4) that wouldn't go away. Why did you have it? Beth from NY Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 25, 2003 Report Share Posted April 25, 2003 I HAD BOTOX!!!! I can't believe it I had to look at the senders email address to make sure I didn't write this email and forget. (forgetting is one of the things I do a lot) The first time I had botox was about 1 month ago, 6 months post op. and i will have it again in two weeks. The doctor gave it to me because I had these massive headaches after surgery (weren't there b4) that wouldn't go away. Why did you have it? Beth from NY Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 25, 2003 Report Share Posted April 25, 2003 I HAD BOTOX!!!! I can't believe it I had to look at the senders email address to make sure I didn't write this email and forget. (forgetting is one of the things I do a lot) The first time I had botox was about 1 month ago, 6 months post op. and i will have it again in two weeks. The doctor gave it to me because I had these massive headaches after surgery (weren't there b4) that wouldn't go away. Why did you have it? Beth from NY Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 8, 2003 Report Share Posted May 8, 2003 Byk Jacquie H (unknown) Sara's last name is??? Tamara mom to Ebony, 5 years old, asd, adhd, bipolar and , 2, polish (lol) wife to Terry _________________________________________________________________ STOP MORE SPAM with the new MSN 8 and get 2 months FREE* http://join.msn.com/?page=features/junkmail Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 8, 2003 Report Share Posted May 8, 2003 Byk Jacquie H (unknown) Sara's last name is??? Tamara mom to Ebony, 5 years old, asd, adhd, bipolar and , 2, polish (lol) wife to Terry _________________________________________________________________ STOP MORE SPAM with the new MSN 8 and get 2 months FREE* http://join.msn.com/?page=features/junkmail Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 10, 2003 Report Share Posted May 10, 2003 In a message dated 5/10/03 10:19:42 PM Eastern Daylight Time, tamara_b73@... writes: > HAPPY MOTHER'S DAY!!!!!!!!!!!!!!!!!! > > I hope everyone has a very relaxing, peaceful mother's day. We all deserve > it.....even if we don't get it. lol > > Thanks and the same to you and all the wonderful moms here. The Grammas & Keion Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.