Guest guest Posted March 5, 2004 Report Share Posted March 5, 2004 Hi Everyone! Jodie and I are giving a presentation on cochlear implants at the 92nd Street Y in NYC (E 92nd Street and Lexington Ave) on March 22nd at 2:30PM. Hope to see you there! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 11, 2004 Report Share Posted June 11, 2004 Hola ! Welcome! Puedes hablar o entender Espanol? Supongo que si, porque es muy similar de Portuges Yo tengo Spinal Muscular Atrophy (SMA). 21, female, Bosnia Si quieres hablemos en Espanol en privado. Puedes escribirme si quieres. Mi correo privado es: mrt@... Bye! Radmila " " " José_Silva <avlis.67481@...> wrote: Nome: José Silva Idade: 45 / 16 / 12 / E-mail: avlis.67481@... Home Page: www.terravista.pt/copacabana/1624 Cidade: Guarda / Portugal Presentation: I am carrying of one, (MUSCULAR ATROPHY SPINAL CHRONICLE). I have the muscles of the legs and the atrophied arms, noticing almost an exemption of muscles in such a way above of the knees as above of the elbows what it makes with that has little force to put into motion me. Since the first symptoms of the illness that I consulted some doctors, even so none of them has given great hopes to me, arriving exactly to have different opinions on my illness. I wait to find in this group, people friends, who if debate with identical problems for an exchange of ideias. I do not speak nor I write in English, to be able to read them, I use the translator, where it very leaves to desire. Since already mine I hug for all Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 21, 2004 Report Share Posted October 21, 2004 Hi, Your English was terrific. I'm glad you wrote in to our group! I couldn't help but comment on your situation. It must be very hard with 2 girls having fever episodes especially at the same time. I also understand how difficult it is to go through all those tests and not actually find anything definitive. I have 2 girls like you, both with fevers. They are not twins, but both of them started their first fevers at the exact same age - a week before they each turned 7 months old. they also fevered at the exact same time many times. Usually Georgia fevered first then Hana would start a few hours later! Like your daughters, Hana gets much worse attacks and gets them more often than Georgia. Hana is usually on a 3 week cycle, but has had " breaks " up to 10 weeks long. After a very long painful and unsuccessful journey through many doctors here in Canada, we made our way to the National Institute of Health (NIH) outside of Washington DC USA. It was at the NIH Fever Study that both my girls were diagnosed with HIDs-a genetic fever similar to FMF. I think your doctors may need to consider is that is NOT genetic. There are virtually no cases of siblings having this disorder. Also, abdominal pain and articular (Joint) pain are NOT usual in . Prednisone does bring down the fevers consistently in , but also has some success in some of the genetic disorders. (It works like magic on my daughter's HIDs episodes) The fact that these fevers disappear at the age of 10 is only partially true. While these fevers last an average of 8 years there are many children who outgrow them before that time but there are also many who have fevers for much longer. It seems that you have had the most common genetic fever testing done. TRAPS, FMF and was HIDs the third one? There are still other genetic causes of fevers that are known and some still unknown. There are also other causes of fevers that may explain both your daughters fevers. Before you accept the diagnosis and start treatments for it, please do research on the genetic fevers and other fevers. You and/or your doctor can contact Dr. Kastner at NIH for more information. There are many great articles in the FILES section of this website including information on the NIH fever study. Best of luck to you and your girls Wilke Mom to HIDs kids Hana 3 and Georgia 1 Vancouver BC Canada > Good afternoon, > > I would like to apologize because my English is very bad and I hope that > you will easily understand me. > > I am glad to have found your group because when the diagnostic have been > done I used to feel lonely. > > I am French, I live in Paris with my husband and our 3 children. > > will be 6 years old in January and my twin little girls ( > and Léa) are now 2 years old. > > During my pregnancy the Physicians told me that the girls were dizigotic > but when they arrived, the doubt was coming because they were so > similar. > > Léa and are born with the same weight (2.410 kg and 2.440 kg) and > the same size (less than 0.5 cm of difference). > > There face is the same, the colour of their eyes and hair exactly the > same … > > Unfortunately the hospital did not study the placenta as they should > have done it. And I can only read that even if there are two bags in my > stomach they can be monozygotic in more than 25% of times. > > More they grow more they are similar even if I try to do my best to make > differences (they never bear the same clothes …) > > Unfortunately, in France it is prohibited to make genetic test to know > if they are monozygotic or not (except on the day of birth). You can > only do it if one of the two children has a serious disease. > > In January 2004 the two girls had a stomatitis with very high > temperature (41° C). > > There were many aphta in all their mouse, tong, and throat. > > They suffer a lot during more than 3 days. Unfortunately, the > pediatrician did not prescribe the right medicine immediately. > > 3 weeks later Léa had only very high fever more than 40° during 3 days > and 3 nights. > > The pediatrician did not found anything else he said " the throat is > pinkish but not really red " . > > It is very difficult to make the fever down. The antipyretic medicines > are not efficient > > During the crisis she used to be very tired and she trembled all the > night. > > After the crisis its face was very pale and she continues to be very > tired during several days. She sleeps more during the rests. > > I feel that she needs 2 or 3 days to recuperate to be back to normal. > > 3 weeks later the same crisis appears. > > You will find here after the date of the crisis. At these dates she has > only very high fever (more than 40°) she is tired but nothing else. > > As you can see Léa is currently hill all months but less. > > Even so, at EACH TIME Léa has 40° fever has also a little bit of > fever but not so much. > > > Léa > > > 23-jan-04 > > > 20-feb-04 > > > 27-march-04 > > > 23-april-04 > > > 13-may-04 > > > 13-june-04 > > > 06-jully-04 > 08-jully-04 > > 25-jully-04 > 25-jully-04 > > 03-sept-04 > > > 09-sept-04 > 09-sept-04 > > At each crisis we have seen the pediatrician who says it is a " virus " . > > In February, I decided to ask for lab. test. > > They show only a CRP = inflammatory disease (sorry, I don't know to > translate) very high. > > In June I said to the pediatrician that I want to know what makes my > girls in such a bad condition. > > Between two crises they are healthy. My girls are full of life, very > happy and dynamic. > > At this moment my pediatrician decided to call a specialist who talked > about the Mediterranean fever. > > We made again urine and blood analysis, we made an abdominal scan, a > pulmonary radio. > > Everything was normal except the CRP (inflammatory sign) which is very > very high. > > After the crisis this CRP become normal. > > Léa received the genetic testing (TRAPS and another one) and we decided > to give her the treatment (colchicine) for the Mediterranean fever > (therapeutic test). > > I took this opportunity to ask for the twin genetic test. Which become > positive: Léa and are monozygotic. > > At the end of the summer time we received the results of the > Mediterranean fever which were negative. Then we stopped the treatment. > > During the 3 last crises we administrate her cortisone (CELESTENE). It > seems like a miracle: the fever fall from 40° to 37° in one hour. > > On September 8 we met the specialist in France of the periodic fevers > who said that they both suffer from the (in France we call it also > " Syndrome de Marshall " ). > > Here is our story. > > The specialist told me that this disease will disappear before the 10 > years old. Is that correct from your experience? > > He also said that they should suffer from abdominal and articular pains. > > Do all the children suffer from these pains? > > Does the prednisone bring relief on these pains? > > He told us about a second treatment: the cimetidine (TAGAMET) is that > efficient? > > The last thing he talked about was the tonsillectomy. Shall we have a > good recovery hope in case of tonsillectomy? > > There is no crisis since 6 weeks can this disease stop so " quickly " ? > > How do you manage the school absence due to this disease? Can your > children have a normal time at school? > > Thanking you in advance for your help, and waiting to read you soon. > > > ce > aitzkowitch@9... > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 21, 2004 Report Share Posted October 21, 2004 Hi, Your English was terrific. I'm glad you wrote in to our group! I couldn't help but comment on your situation. It must be very hard with 2 girls having fever episodes especially at the same time. I also understand how difficult it is to go through all those tests and not actually find anything definitive. I have 2 girls like you, both with fevers. They are not twins, but both of them started their first fevers at the exact same age - a week before they each turned 7 months old. they also fevered at the exact same time many times. Usually Georgia fevered first then Hana would start a few hours later! Like your daughters, Hana gets much worse attacks and gets them more often than Georgia. Hana is usually on a 3 week cycle, but has had " breaks " up to 10 weeks long. After a very long painful and unsuccessful journey through many doctors here in Canada, we made our way to the National Institute of Health (NIH) outside of Washington DC USA. It was at the NIH Fever Study that both my girls were diagnosed with HIDs-a genetic fever similar to FMF. I think your doctors may need to consider is that is NOT genetic. There are virtually no cases of siblings having this disorder. Also, abdominal pain and articular (Joint) pain are NOT usual in . Prednisone does bring down the fevers consistently in , but also has some success in some of the genetic disorders. (It works like magic on my daughter's HIDs episodes) The fact that these fevers disappear at the age of 10 is only partially true. While these fevers last an average of 8 years there are many children who outgrow them before that time but there are also many who have fevers for much longer. It seems that you have had the most common genetic fever testing done. TRAPS, FMF and was HIDs the third one? There are still other genetic causes of fevers that are known and some still unknown. There are also other causes of fevers that may explain both your daughters fevers. Before you accept the diagnosis and start treatments for it, please do research on the genetic fevers and other fevers. You and/or your doctor can contact Dr. Kastner at NIH for more information. There are many great articles in the FILES section of this website including information on the NIH fever study. Best of luck to you and your girls Wilke Mom to HIDs kids Hana 3 and Georgia 1 Vancouver BC Canada > Good afternoon, > > I would like to apologize because my English is very bad and I hope that > you will easily understand me. > > I am glad to have found your group because when the diagnostic have been > done I used to feel lonely. > > I am French, I live in Paris with my husband and our 3 children. > > will be 6 years old in January and my twin little girls ( > and Léa) are now 2 years old. > > During my pregnancy the Physicians told me that the girls were dizigotic > but when they arrived, the doubt was coming because they were so > similar. > > Léa and are born with the same weight (2.410 kg and 2.440 kg) and > the same size (less than 0.5 cm of difference). > > There face is the same, the colour of their eyes and hair exactly the > same … > > Unfortunately the hospital did not study the placenta as they should > have done it. And I can only read that even if there are two bags in my > stomach they can be monozygotic in more than 25% of times. > > More they grow more they are similar even if I try to do my best to make > differences (they never bear the same clothes …) > > Unfortunately, in France it is prohibited to make genetic test to know > if they are monozygotic or not (except on the day of birth). You can > only do it if one of the two children has a serious disease. > > In January 2004 the two girls had a stomatitis with very high > temperature (41° C). > > There were many aphta in all their mouse, tong, and throat. > > They suffer a lot during more than 3 days. Unfortunately, the > pediatrician did not prescribe the right medicine immediately. > > 3 weeks later Léa had only very high fever more than 40° during 3 days > and 3 nights. > > The pediatrician did not found anything else he said " the throat is > pinkish but not really red " . > > It is very difficult to make the fever down. The antipyretic medicines > are not efficient > > During the crisis she used to be very tired and she trembled all the > night. > > After the crisis its face was very pale and she continues to be very > tired during several days. She sleeps more during the rests. > > I feel that she needs 2 or 3 days to recuperate to be back to normal. > > 3 weeks later the same crisis appears. > > You will find here after the date of the crisis. At these dates she has > only very high fever (more than 40°) she is tired but nothing else. > > As you can see Léa is currently hill all months but less. > > Even so, at EACH TIME Léa has 40° fever has also a little bit of > fever but not so much. > > > Léa > > > 23-jan-04 > > > 20-feb-04 > > > 27-march-04 > > > 23-april-04 > > > 13-may-04 > > > 13-june-04 > > > 06-jully-04 > 08-jully-04 > > 25-jully-04 > 25-jully-04 > > 03-sept-04 > > > 09-sept-04 > 09-sept-04 > > At each crisis we have seen the pediatrician who says it is a " virus " . > > In February, I decided to ask for lab. test. > > They show only a CRP = inflammatory disease (sorry, I don't know to > translate) very high. > > In June I said to the pediatrician that I want to know what makes my > girls in such a bad condition. > > Between two crises they are healthy. My girls are full of life, very > happy and dynamic. > > At this moment my pediatrician decided to call a specialist who talked > about the Mediterranean fever. > > We made again urine and blood analysis, we made an abdominal scan, a > pulmonary radio. > > Everything was normal except the CRP (inflammatory sign) which is very > very high. > > After the crisis this CRP become normal. > > Léa received the genetic testing (TRAPS and another one) and we decided > to give her the treatment (colchicine) for the Mediterranean fever > (therapeutic test). > > I took this opportunity to ask for the twin genetic test. Which become > positive: Léa and are monozygotic. > > At the end of the summer time we received the results of the > Mediterranean fever which were negative. Then we stopped the treatment. > > During the 3 last crises we administrate her cortisone (CELESTENE). It > seems like a miracle: the fever fall from 40° to 37° in one hour. > > On September 8 we met the specialist in France of the periodic fevers > who said that they both suffer from the (in France we call it also > " Syndrome de Marshall " ). > > Here is our story. > > The specialist told me that this disease will disappear before the 10 > years old. Is that correct from your experience? > > He also said that they should suffer from abdominal and articular pains. > > Do all the children suffer from these pains? > > Does the prednisone bring relief on these pains? > > He told us about a second treatment: the cimetidine (TAGAMET) is that > efficient? > > The last thing he talked about was the tonsillectomy. Shall we have a > good recovery hope in case of tonsillectomy? > > There is no crisis since 6 weeks can this disease stop so " quickly " ? > > How do you manage the school absence due to this disease? Can your > children have a normal time at school? > > Thanking you in advance for your help, and waiting to read you soon. > > > ce > aitzkowitch@9... > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 9, 2005 Report Share Posted February 9, 2005 In a message dated 2/9/05 10:23:02 AM Eastern Standard Time, writes: > Shaye~When we're setting the presenters for the 2005 gathering, is > it AOK for me to present developing private label soaps as a product > line? That is, What is a private label soap versus a signature > soap?, What's involved in doing private labeling?, and How do you > establish a working relationship with a private label client? Let me > know! Pamela Baisley/BaisleyHerbals > Hi Pamela- Hope all is well with you! I would love to hear you talk about this topic-very nice of you to offer! :-) Carol J Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 18, 2005 Report Share Posted June 18, 2005 Impressive job ! Charlie > Last night at the local monthly meeting of the political party to which i belong, I gave a presentation on autism and thimerosol issues. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 18, 2005 Report Share Posted June 18, 2005 Hi . What a great job you did!! I spoke at my daughter's school last night-private therapeutic school for asd kids, they only gave me 5 min at the end of the monthly PTC meeting---I donated EOH to the library there...the director took it home (good)..but no one showed any outrage or asked many questions! Most looked at me like " when are you going to give up on this " . I have been talking and sharing info with them since 2001!!--I passed out info on HR 881 and asked them to please contact their Reps re--getting mercury out of vaccinations,,etc. I also passed out the UA ad of the fish and talked about current media stuff, IMUS, Kennedy, USA/NYT ads...One dad said " well how did they get the mercury in the shots...NOT " WHY " ...and the Pres of the PTC said " well there is still " autism " ...and I was getting pissed/frustrated with these comments..but kept it cool. My reply was that for my daughter, her diagnosis 9 years ago was based on a list of observations and now her diagnosis, heavy metal toxicity, brain encephalthy (sp?), and gut dysbiosis..was a direct result of the 165 mcg of thimerosal she received with her vaccines before 2 yrs of age....They were frozen, staring at me...so I said that whatever their beliefs may be regarding their children, I know that is medically ill and that either Pres. Bush or Congress needs to end these injuries by removing mercury..I threw in the flu shot stats for next year...The pres. who was writing down all the previous agenda issues was not writing ANYTHING so I asked him to please write down about EOH, HR 881 and for parents to seek out biomedical/gov't issues by going to AutismOne website..that the presentations were available. His notes are then emailed to absent parents and our Board members/staff. I have always been hitting brick walls with these parents..only about 2 other familes out of 30 are on " board " . One good thing is that one of the OT's that works there and loves my daughter, called me after I saw her at AutismOne. She went to man the school's booth but went to some of the presentations because her good friend has 2 children w/autism. She is convinced and wants to do whatever she can to help and get the word out. She said that she cannot believe the denial and defensiveness that goes on within the school and is so frustrated. I told her that I am approaching the director next week and asking to do a presentation...but I am going to say it is about what I learned at AutismOne..because if I mention vaccines/thimerosal, I'm sure she will say " no " . It is unbelievable to me how thick the denial is...I think these, and many other parents would rather believe in genetics and/or our government than the truth. Dr. Hicks did a presentation 3 years ago just on Mercury/Autism...and here we are in 2005 and nothing has changed...so I am on a mission, but need to go through the back door. This reminds me of working with chemically dependent...the denial part, so you show and give examples and let them work through their denial. Sorry this is so long but I needed to vent...Thanks! > Last night at the local monthly meeting of the political party to which i belong, I gave a presentation on autism and thimerosol issues. For the talk, I prepared a power point of about 30 slides and distributed the RFK Jr. article, a Mothering Magazine article of an interview with Dr. Cave, the press release when Schwarzenneger signed the CA bill that I found on Generation Rescue and lest they think I spend all my time reading Rolling Stone magazine, the article of the Methodist Church calling on the CDC for the removal of thimerosol. :-) I described how my middle child had suffered a vaccine reaction at 4 months and had recovered but that my youngest child, born during the years when vaccine use was increasing, had not been so lucky. > > The group was attentive, asking lots of questions. Prior to the speech, I had read on this list some of the questions that people raise when first encountering this issue. Having read those possible questions gave me confidence about what might surface.. The questions I encountered were related to obtaining vaccine waivers in California, what effect the thimerosol in flu shots, for example, in adults might have, and what were strategies that led to the children healing that had been discussed. One gentleman asked me later if I was aware of the Imus show. " Yep " , I replied. > > There was an overall response of concern and interest and shock at some of the details of Simpsonwood and the entire 'secret rider " debacle and in fact, the whole entire thimerosol matter. The only really surprising response I had was in a brief conversation as I headed out the door at the end of the evening. A woman approached me and asked a few questions and made a few comments. Then she asked me what I " do " (for a living). I replied and reciprocated the question. She informed me she is a doctor. I proceded to ask her what her opinion was on the issue(s). " The thimerosol is out " she insisted repeatedly and angrily (meaning no shots had thimerosol any longer). Again and again she repeated this statement as if everything was solved and the issue is finished. She then told me she couldn't watch my talk and that she had left the hall!!!! Apparently she had returned for the rest of the meeting. I told her I was glad we were having this discussion as it's an important one to have. She made a number of statements that were completely out in left-field and I wanted to tell her that if she had just stayed to hear my talk, she wouldn't be making such ill-founded comments. She swears that she only gives thimerosol-free flu vaccines but she only knew that because she said she checked the package insert when a patient had asked her to do so. She had never checked before herself. I applauded her for at least checking even if she wasn't compelled to do it on her own. It's a start of some kind. (Albeit small.) > > Her main thrust, I would say, was that she felt justified in giving vaccines with whatever poisons or neurotoxins may be present (??!!) due to the fact she had seen individuals suffer and die from the diseases that now had vaccines. She was impervious to anything that I could say. Just kind of a heads up for others who may encounter a similar person. She mentioned that some adults were getting pertussis disease and it is under consideration (by the AMA?) of whether adults should now get boosters. Ugh. I told her I know a child who WAS fully vaccinated and STILL got pertussis. She informed me that while the vaccine confers some immunity it is not total and that cases would be mild if the child had had the shot. I feel it is just a sign that the shot didn't work. > > If she had been so upset about the topic, why hadn't she stayed and voiced her opinion publicly? It would have been a perfect opportunity for her to educate the group on her perspective. In considering her actions and recalling her demeanor, it seemed that in spite of her defensiveness, she was actually defenseless and behaved as if she felt completely vulnerable. > > The presentation was an overall success I feel. At the conclusion of my talk I gave doorprizes of the Evidence of Harm book. The way people won the books was that they answered questions related to the topic. For example, I said that there had been an individual named tonight in the talk that has been associated with the inclusion of the 'secret' rider. Immediately hands shot up to answer who that was when I asked. I asked three such questions. Each recipient seemed pleased to be taking home a copy of their own. It was gratifying that they had listened so closely and that they answered so quickly. > > The only difficult part of preparing the information for the power point was sifting through the *thousands* of e-mails I have saved into folders from this list and information from 's book I have marked and then narrowing the talk down to a reasonable amount of time. > > Regrets? Only one. I forgot to include the " Got Mercury " picture on the slide where I mentioned Mad Hatter's disease. > > K. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 18, 2005 Report Share Posted June 18, 2005 Wow! I would have loved to have been there. It sounds like you did a fantastic job. Forget the doctor. Maybe you should have given her the book. On second thought it would have been a waste. I don't think I could ever have done what you did. I am just too angry to come across as informed. I start out fine, and then I go off. I was able to help a girl at work. It took the doctor lying to her about a vaccine he said was mandated, when it ws only recommended. She was furious when I gave her the info right from the CDC's web site. She went into her office and called the PED's office. I could hear her voice all the way in my cubicle. After that she came over to ask me what I thought she should do. I told her if you are goung to vaccinate then only let them give her one at a time, and 30 days apart. I was really proud of myself. I really wanted to say. DON'T GIVE HER ANY! If I had I would have lost her. She did exactly that. I was really proud of her when she went in and the baby was just getting over a cold. She refused the vaccine and held her ground. She said the PED was a lot easier to deal with after she confronted him about lying to her. She even told me his nure practictioner started asking her about her parenting skills, was very demeaning. Didn't work though. She left the office and called the head doctor and told him what the nurse practitioner did. He said he would talk with her, she told the receptionist to never book her with that nurse practitioner again. Here's the funniest part. This MD did a vasectomy on her husband. He screwed up, she got pregenant. She finally changed doctors. LOL Peggy > Last night at the local monthly meeting of the political party to which i belong, I gave a presentation on autism and thimerosol issues. For the talk, I prepared a power point of about 30 slides and distributed the RFK Jr. article, a Mothering Magazine article of an interview with Dr. Cave, the press release when Schwarzenneger signed the CA bill that I found on Generation Rescue and lest they think I spend all my time reading Rolling Stone magazine, the article of the Methodist Church calling on the CDC for the removal of thimerosol. :-) I described how my middle child had suffered a vaccine reaction at 4 months and had recovered but that my youngest child, born during the years when vaccine use was increasing, had not been so lucky. > > The group was attentive, asking lots of questions. Prior to the speech, I had read on this list some of the questions that people raise when first encountering this issue. Having read those possible questions gave me confidence about what might surface.. The questions I encountered were related to obtaining vaccine waivers in California, what effect the thimerosol in flu shots, for example, in adults might have, and what were strategies that led to the children healing that had been discussed. One gentleman asked me later if I was aware of the Imus show. " Yep " , I replied. > > There was an overall response of concern and interest and shock at some of the details of Simpsonwood and the entire 'secret rider " debacle and in fact, the whole entire thimerosol matter. The only really surprising response I had was in a brief conversation as I headed out the door at the end of the evening. A woman approached me and asked a few questions and made a few comments. Then she asked me what I " do " (for a living). I replied and reciprocated the question. She informed me she is a doctor. I proceded to ask her what her opinion was on the issue(s). " The thimerosol is out " she insisted repeatedly and angrily (meaning no shots had thimerosol any longer). Again and again she repeated this statement as if everything was solved and the issue is finished. She then told me she couldn't watch my talk and that she had left the hall!!!! Apparently she had returned for the rest of the meeting. I told her I was glad we were having this discussion as it's an important one to have. She made a number of statements that were completely out in left-field and I wanted to tell her that if she had just stayed to hear my talk, she wouldn't be making such ill-founded comments. She swears that she only gives thimerosol-free flu vaccines but she only knew that because she said she checked the package insert when a patient had asked her to do so. She had never checked before herself. I applauded her for at least checking even if she wasn't compelled to do it on her own. It's a start of some kind. (Albeit small.) > > Her main thrust, I would say, was that she felt justified in giving vaccines with whatever poisons or neurotoxins may be present (??!!) due to the fact she had seen individuals suffer and die from the diseases that now had vaccines. She was impervious to anything that I could say. Just kind of a heads up for others who may encounter a similar person. She mentioned that some adults were getting pertussis disease and it is under consideration (by the AMA?) of whether adults should now get boosters. Ugh. I told her I know a child who WAS fully vaccinated and STILL got pertussis. She informed me that while the vaccine confers some immunity it is not total and that cases would be mild if the child had had the shot. I feel it is just a sign that the shot didn't work. > > If she had been so upset about the topic, why hadn't she stayed and voiced her opinion publicly? It would have been a perfect opportunity for her to educate the group on her perspective. In considering her actions and recalling her demeanor, it seemed that in spite of her defensiveness, she was actually defenseless and behaved as if she felt completely vulnerable. > > The presentation was an overall success I feel. At the conclusion of my talk I gave doorprizes of the Evidence of Harm book. The way people won the books was that they answered questions related to the topic. For example, I said that there had been an individual named tonight in the talk that has been associated with the inclusion of the 'secret' rider. Immediately hands shot up to answer who that was when I asked. I asked three such questions. Each recipient seemed pleased to be taking home a copy of their own. It was gratifying that they had listened so closely and that they answered so quickly. > > The only difficult part of preparing the information for the power point was sifting through the *thousands* of e-mails I have saved into folders from this list and information from 's book I have marked and then narrowing the talk down to a reasonable amount of time. > > Regrets? Only one. I forgot to include the " Got Mercury " picture on the slide where I mentioned Mad Hatter's disease. > > K. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 18, 2005 Report Share Posted June 18, 2005 Great Job ....I think it has to be awful for doctors to come to grips that they may have inadvertantly harmed children with shots. As a parent it has taken me a year or two to come to grips with that entire issue myself. I could not imagine having a practice full of children then seeing for myself, some of them return with inexplicable neuro damage. Maybe I would insulate myself in denial too. How thin the arguements are anymore...she didn't stay because she didn't have a chance. How do you explain shooting a toxin into a baby and it's ok. Answer: you don't...you can't...so you intimidate with Pharma babble...that doesn't work you leave the room. Keedy <wkeedy@...> wrote: Last night at the local monthly meeting of the political party to which i belong, I gave a presentation on autism and thimerosol issues. For the talk, I prepared a power point of about 30 slides and distributed the RFK Jr. article, a Mothering Magazine article of an interview with Dr. Cave, the press release when Schwarzenneger signed the CA bill that I found on Generation Rescue and lest they think I spend all my time reading Rolling Stone magazine, the article of the Methodist Church calling on the CDC for the removal of thimerosol. :-) I described how my middle child had suffered a vaccine reaction at 4 months and had recovered but that my youngest child, born during the years when vaccine use was increasing, had not been so lucky. The group was attentive, asking lots of questions. Prior to the speech, I had read on this list some of the questions that people raise when first encountering this issue. Having read those possible questions gave me confidence about what might surface.. The questions I encountered were related to obtaining vaccine waivers in California, what effect the thimerosol in flu shots, for example, in adults might have, and what were strategies that led to the children healing that had been discussed. One gentleman asked me later if I was aware of the Imus show. "Yep", I replied. There was an overall response of concern and interest and shock at some of the details of Simpsonwood and the entire 'secret rider" debacle and in fact, the whole entire thimerosol matter. The only really surprising response I had was in a brief conversation as I headed out the door at the end of the evening. A woman approached me and asked a few questions and made a few comments. Then she asked me what I "do" (for a living). I replied and reciprocated the question. She informed me she is a doctor. I proceded to ask her what her opinion was on the issue(s). "The thimerosol is out" she insisted repeatedly and angrily (meaning no shots had thimerosol any longer). Again and again she repeated this statement as if everything was solved and the issue is finished. She then told me she couldn't watch my talk and that she had left the hall!!!! Apparently she had returned for the rest of the meeting. I told her I was glad we were having this discussion as it's an important one to have. She made a number of statements that were completely out in left-field and I wanted to tell her that if she had just stayed to hear my talk, she wouldn't be making such ill-founded comments. She swears that she only gives thimerosol-free flu vaccines but she only knew that because she said she checked the package insert when a patient had asked her to do so. She had never checked before herself. I applauded her for at least checking even if she wasn't compelled to do it on her own. It's a start of some kind. (Albeit small.) Her main thrust, I would say, was that she felt justified in giving vaccines with whatever poisons or neurotoxins may be present (??!!) due to the fact she had seen individuals suffer and die from the diseases that now had vaccines. She was impervious to anything that I could say. Just kind of a heads up for others who may encounter a similar person. She mentioned that some adults were getting pertussis disease and it is under consideration (by the AMA?) of whether adults should now get boosters. Ugh. I told her I know a child who WAS fully vaccinated and STILL got pertussis. She informed me that while the vaccine confers some immunity it is not total and that cases would be mild if the child had had the shot. I feel it is just a sign that the shot didn't work. If she had been so upset about the topic, why hadn't she stayed and voiced her opinion publicly? It would have been a perfect opportunity for her to educate the group on her perspective. In considering her actions and recalling her demeanor, it seemed that in spite of her defensiveness, she was actually defenseless and behaved as if she felt completely vulnerable. The presentation was an overall success I feel. At the conclusion of my talk I gave doorprizes of the Evidence of Harm book. The way people won the books was that they answered questions related to the topic. For example, I said that there had been an individual named tonight in the talk that has been associated with the inclusion of the 'secret' rider. Immediately hands shot up to answer who that was when I asked. I asked three such questions. Each recipient seemed pleased to be taking home a copy of their own. It was gratifying that they had listened so closely and that they answered so quickly. The only difficult part of preparing the information for the power point was sifting through the *thousands* of e-mails I have saved into folders from this list and information from 's book I have marked and then narrowing the talk down to a reasonable amount of time. Regrets? Only one. I forgot to include the "Got Mercury" picture on the slide where I mentioned Mad Hatter's disease. K.__________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 10, 2007 Report Share Posted April 10, 2007 Thanks for posting this. I'm a Special Ed. Liason at our school, and we have a couple of parents' meetings coming up pretty soon. There's not a lot of interest in presenting information about spectrum disorders. Mostly the parents want to hear about ADHD since that's what the majority of kids who are ID'ed for special ed. services are dealing with. I'd like to do an autism session though, and this gives me a lot of material to work with. Even if we don't do that, I think the exercise about trying to write cursive upside-down and backwards could be a very useful way of helping people understand what dysgraphia is like. Sue C. > > Here's the lecture and the info we just had in my class. It's a lot to read > and think about but some of it might help you with your presentation. > > Lecture for Unit 8 ><snip> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 11, 2009 Report Share Posted January 11, 2009 Dear members, My son Pablo (age 25) suffers CMT disease since 1990. It began with hearing loss and was treated by physicians (hearing specialists) that didn´t find the reason of it. Now, we know that CMT is responsible for every other common symptons (weakness of distal leg muscles, cave feet) plus deafness. Presently, still we don´t know what type of CMT is. Probably CMT1E or CMTX + deafness. His cousin and his uncle suffers the same disease, but lab tests looking at connexin X32 shows no damage. He lives at Argentina. He has a good job and is well recognized as a hard worker there. His sister hasn´t any kind of symptoms but she is thinking to get pregnant and she would be very pleased to know if his son (or daughter) could born with CMT or not. I would like to get in contact by e-mail with families who has one (or more) member with CMT plus deafness and share information and suggestions. Thanks and best regards Pedro Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 12, 2009 Report Share Posted January 12, 2009 Welcome to the group Pedro. Hello.My name is Geri and I'm 67 yr old...my father had CMT, his mother, brothers , uncles and cousins...it is very prevalent in my family. My daughter has CMT, Granddaughter and one Great Grand grandson. My father was hard of hearing and I;m having problems too..... The doctors said I was CMT2 but have changed their minds...when I asked what type I had he didn't answer me... I'm in a wheelchair and my dad was also. I have cousins that were far worse then I and their older children were so bad they crawled. Wish I knew what type CMT that I have. Welcome to this wonderful group. Blessings, Geri in Minnesota Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 12, 2009 Report Share Posted January 12, 2009 Hi Betty Thanks for your warm " welcome " . My son Pablo, his cousin and his uncle, has suffer hearing loss very early in their lives. Probably at age 5. Searching at Google (CMT1+deafness) you can find some articles that explains the genetic mechanism. It is similar to the most common CMT1A, (affected chromosome 17 and gen PMP22), but gen PMP22 has " mutation points and deletions in his chemical chain " that are related to deafness. It is identified as CMT1E. It seems to be a de novo mutation. Only 2% of CMT1 cases are CMT1E. So, I think that your sons will not be in danger. Best regards Pedro Quote Link to comment Share on other sites More sharing options...
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