Guest guest Posted September 18, 2008 Report Share Posted September 18, 2008 Hi Kellie,thank you from my heart for sharing your families story. You bring the reality of love,courage and loss to me. My prayers go out to you,family to family. I would like the families to please understand I am only speaking of vaccinations in regards to my own children. 2 of my children had reactions to the shots because of the way their bodies, systems dealt with them. They had all their primary shots wich allowed discovery of their reactions to be verified. They did have the alternative type dose for polio. Their pediatrician advised no further shots,boosters ect. because of fevers and convulsions following mmr/dpt. They did not complete their schedules under the advice of our pediatrician. It does cause me to worry. I had strep at age 14. It traveled into my organs. I was in a coma because of strep. Tishanne - In AutismBehaviorProblems , Kellie Folkerts wrote: > > > Hi , > > I know what I'm about to say isn't going to be popular but I have to say it. I'm not trying to scare anyone or change anyones mind on anything but groups are about sharing your personal experience and I really feel the need to share this with you all. was 2 and we had just started seeing a DAN doctor. My daughter had just been born and he recommended no vaccines for her. We were (and still are) very afraid of having another autistic child so we didn't give her any. When she was 10 months I asked about giving her some on a different schedule(not so many at one time) and he said yes when she was 2 we would start them. On Dec. 8 2003 I put to bed she was fine and the next morning she was gone. She had contracted Strep which turned into meningitis and it went so quickly it only took hours from onset to death. We will always regret not having her vaccinated and we can't take it back. Our daughter Paige was born in > 2005 and we had her vaccinated at a slower rate. I'm really not trying to scare anyone. I just needed to tell you what we have experienced. Kellie > > > > Hi Everyone, > > > > My name is a, I am a 24 year old mother of 4 kids aged 4 > months (boy), 2 years (girl), 4 years (boy with ASD) and 5 years > (girl). My 4 year old son Donovan was diagnosed with Autism when he > was 25 months old. He never really spoke as a baby other than mama > and dada (with no meaning), but he didn't start to lose eye contact > or start stimming until after he had his 12 month and 18 month > vaccinations. I don't fully believe that these shots caused my son's > autism- but I know they played a role is poisoning his system. Since > his diagnosis he has made much less progress than we had hoped. The > most progress he has made is regaining eye contact, bringing things > he wants opened to us, pushing a chair to climb and get something he > wants and sometimes pushing buttons on a communicative device with > pictures to say what he wants every now and then. He is non-verbal > with no real functional communication for daily needs and desires. > We tried ABA , PECS and signing for the first year and he wouldn't > respond. He throws frequent tantrums, often for no apparent reason. > When he gets upset he will sometimes hit at me. Donovan is > affectionate though. He will come to me for hugs and kisses and > likes to be tickled. But sometimes when giving or receiving > affection, he will pinch me or grab and pull my hair all of the > sudden- when he does this, he is still smiling and does not seem to > understand that he is hurting me. I tell him " no " and I think he > understands what no is, but he continues to do this. He has recently > pulled my mom's hair and she was shocked- I never told her that he > pulled my hair because my family is already weary to be around him > because of the behaviors he exhibits. Donovan also stims all the > time. He stims by flicking his spit with his finders in front of his > eyes and especially in streams of indoor and outdoor light. When he > stims he gets so excited that he stands on his toes and you can > almost feel the excitement and energy building up in him and he says > " aaahhhhh " and other vocalizations when stimming. He also gets > " overstimulated when he stims and will go from being excited to > crying really loudly. Donovan also likes to knock things off of > tables, turn cups filled with liquid upside down, and " mess up " > things by moving them back and forth real fast under his hands. He > used to be totally infatuated with strings and would flick them in > front of his face, now he only flicks them in light and doesn't seem > to be obsessed with them anymore (which is great, he used to unbraid > the hair on his older sisters dolls, tear it out and leave it all > over the house and tear up the strings in carpet. > > > > I often think about his future and fear that my family will never > truly be comfortable around him because he requires so much attention > and tends to destroy their houses. I fear that as he gets older > that, since he is so big (he's only 4 taller than my 5 year old and > weights 49 pounds from height and stature, not fat) that his dad and > I won't be able to physically handle him like we can now, especially > during tantrums. > > > > I often hear how autistic kids tend to have an area they excel at > or have high interest in- I have yet to see what that area might be > for Donovan. I hope and pray that he will grow to be accepted by my > family and his peers, communicate with us in some way and stop his > aggressive behaviors. I have also heard that stimming is > neurodegenerative, so when he tries to stim all the time, I keep > thinking that he is ruining his brain or something by doing it. > > > > It is difficult to say the least, raising four kids that already > have health issues like sever eczema and asthma, sleeping issues, > etc. then to worry about Donovan all the time and how his future will > be is enough to really stress me out. On top of everything else, I > go to school full-time, work full-time and never seem to bet sleep. > My children's father is a tremendous help, but both of us are > exhausted and we often get discouraged at the lack of progress for > Donovan. > > > > I do not want to medicate my son. I have read how often these > stimulants and anti-depressants are medicines made for adults, but > given to children in lower doses- with no real un-biased studies of > their efficacy in children. I have also seen first hand how children > who are on medicines as kids, grow up and stop taking their medicine, > and the chemical imbalance is a sort of shock to their system and > they act out violently. And that these acts of violence or rage make > people think that " they need their medicine " when in fact their body > is going through withdrawal. > > > > I want to snap Donovan into our world naturally and soon, with out > causing so much stress on his siblings. (His tantrums make the other > kids cry and get scared>) > > > > I hope someone can relate to my situation and give me some advice > on how to help my son. I would also like to know what services your > children get through the school district and if you get daily living > skills assistance also and if so, how did you get those services. > > > > Thanks for taking the time to read my story. > > > > a Calderon > > > > > > > > > > > > > > > > > ____________ _________ _________ _________ _________ _________ _ > > This e-mail has been scanned by MCI Managed Email Content Service, > using Skeptic technology powered by MessageLabs. For more > information on MCI's Managed Email Content Service, visit http:// > www.mci.com. > > > ____________ _________ _________ _________ _________ _________ _ > > > ____________ _________ _________ _________ _________ _________ _________ ____ > This e-mail has been scanned by MCI Managed Email Content Service, using Skeptic technology powered by MessageLabs. For more information on MCI's Managed Email Content Service, visit http:// www.mci. com. > ____________ _________ _________ _________ _________ _________ _________ ____ > ____________ _________ _________ _________ _________ _________ _________ ____ > This e-mail has been scanned by MCI Managed Email Content Service, using Skeptic technology powered by MessageLabs. For more information on MCI's Managed Email Content Service, visit http:// www.mci. com. > ____________ _________ _________ _________ _________ _________ _________ ____ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 18, 2008 Report Share Posted September 18, 2008 That's why anitibiotics are soooooooooo imprtant with strep...step is bacterial, not viral and it does not go away on its own..... e Re: Re: New to Group Recent Activity 16 New MembersVisit Your Group Meditation and Lovingkindness A Yahoo! Group to share and learn. Yahoo! Health Asthma Triggers How you can identify them. Cat Groups on Yahoo! Groups discuss everything related to cats. .. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 18, 2008 Report Share Posted September 18, 2008 Remember that there are different types of strep infections….the one we most often get, Strep Throat, is not something you can vaccinate against. The one you would be vaccinating for, and I think the one that affected Kellie’s family so deeply, was probably the Group B Streptococcal Meningitis… So, a vaccine wouldn’t really stop your friend from getting repeated strep throat infections…. I get strep about once a year and my son had it 3 times last spring but is having his tonsils out to stop that going forward… Dora in WA From: AutismBehaviorProblems [mailto:AutismBehaviorProblems ] On Behalf Of stacie Sent: Thursday, September 18, 2008 8:09 AM To: AutismBehaviorProblems Subject: Re: Re: New to Group Oh wow! You were in a coma because of strep? I have never had it and my kids and husband don't get it but my best friend who I have known since birth literally gets it all the time and so do her kids! Stacie B Aurora IL Sent via BlackBerry by AT & T From: " tishannepatterson " <tishannepatterson> Date: Thu, 18 Sep 2008 09:05:01 -0000 To: <AutismBehaviorProblems > Subject: Re: New to Group Hi Kellie,thank you from my heart for sharing your families story. You bring the reality of love,courage and loss to me. My prayers go out to you,family to family. I would like the families to please understand I am only speaking of vaccinations in regards to my own children. 2 of my children had reactions to the shots because of the way their bodies, systems dealt with them. They had all their primary shots wich allowed discovery of their reactions to be verified. They did have the alternative type dose for polio. Their pediatrician advised no further shots,boosters ect. because of fevers and convulsions following mmr/dpt. They did not complete their schedules under the advice of our pediatrician. It does cause me to worry. I had strep at age 14. It traveled into my organs. I was in a coma because of strep. Tishanne - In AutismBehaviorProblems , Kellie Folkerts wrote: > > > Hi , > > I know what I'm about to say isn't going to be popular but I have to say it. I'm not trying to scare anyone or change anyones mind on anything but groups are about sharing your personal experience and I really feel the need to share this with you all. was 2 and we had just started seeing a DAN doctor. My daughter had just been born and he recommended no vaccines for her. We were (and still are) very afraid of having another autistic child so we didn't give her any. When she was 10 months I asked about giving her some on a different schedule(not so many at one time) and he said yes when she was 2 we would start them. On Dec. 8 2003 I put to bed she was fine and the next morning she was gone. She had contracted Strep which turned into meningitisand it went so quickly it only took hours from onset to death. We will always regret not having her vaccinated and we can't take it back. Our daughter Paige was born in > 2005 and we had her vaccinated at a slower rate. I'm really not trying to scare anyone. I just needed to tell you what we have experienced. Kellie > > > > Hi Everyone, > > > > My name is a, I am a 24 year old mother of 4 kids aged 4 > months (boy), 2 years (girl), 4 years (boy with ASD) and 5 years > (girl). My 4 year old son Donovan was diagnosed with Autism when he > was 25 months old. He never really spoke as a baby other than mama > and dada (with no meaning), but he didn't start to lose eye contact > or start stimming until after he had his 12 month and 18 month > vaccinations. I don't fully believe that these shots caused my son's > autism- but I know they played a role is poisoning his system. Since > his diagnosis he has made much less progress than we had hoped. The > most progress he has made is regaining eye contact, bringing things > he wants opened to us, pushing a chair to climb and get something he > wants and sometimes pushing buttons on a communicative device with > pictures to say what he wants every now and then. He is non-verbal > with no real functional communication for daily needs and desires. > We tried ABA , PECS and signing for the first year and he wouldn't > respond. He throws frequent tantrums, often for no apparent reason. > When he gets upset he will sometimes hit at me. Donovan is > affectionate though. He will come to me for hugs and kisses and > likes to be tickled. But sometimes when giving or receiving > affection, he will pinch me or grab and pull my hair all of the > sudden- when he does this, he is still smiling and does not seem to > understand that he is hurting me. I tell him " no " and I think he > understands what no is, but he continues to do this. He has recently > pulled my mom's hair and she was shocked- I never told her that he > pulled my hair because my family is already weary to be around him > because of the behaviors he exhibits. Donovan also stims all the > time. He stims by flicking his spit with his finders in front of his > eyes and especially in streams of indoor and outdoor light. When he > stims he gets so excited that he stands on his toes and you can > almost feel the excitement and energy building up in him and he says > " aaahhhhh " and other vocalizations when stimming. He also gets > " overstimulated when he stims and will go from being excited to > crying really loudly. Donovan also likes to knock things off of > tables, turn cups filled with liquid upside down, and " mess up " > things by moving them back and forth real fast under his hands. He > used to be totally infatuated with strings and would flick them in > front of his face, now he only flicks them in light and doesn't seem > to be obsessed with them anymore (which is great, he used to unbraid > the hair on his older sisters dolls, tear it out and leave it all > over the house and tear up the strings in carpet. > > > > I often think about his future and fear that my family will never > truly be comfortable around him because he requires so much attention > and tends to destroy their houses. I fear that as he gets older > that, since he is so big (he's only 4 taller than my 5 year old and > weights 49 pounds from height and stature, not fat) that his dad and > I won't be able to physically handle him like we can now, especially > during tantrums. > > > > I often hear how autistic kids tend to have an area they excel at > or have high interest in- I have yet to see what that area might be > for Donovan. I hope and pray that he will grow to be accepted by my > family and his peers, communicate with us in some way and stop his > aggressive behaviors. I have also heard that stimming is > neurodegenerative, so when he tries to stim all the time, I keep > thinking that he is ruining his brain or something by doing it. > > > > It is difficult to say the least, raising four kids that already > have health issues like sever eczema and asthma, sleeping issues, > etc. then to worry about Donovan all the time and how his future will > be is enough to really stress me out. On top of everything else, I > go to school full-time, work full-time and never seem to bet sleep. > My children's father is a tremendous help, but both of us are > exhausted and we often get discouraged at the lack of progress for > Donovan. > > > > I do not want to medicate my son. I have read how often these > stimulants and anti-depressants are medicines made for adults, but > given to children in lower doses- with no real un-biased studies of > their efficacy in children. I have also seen first hand how children > who are on medicines as kids, grow up and stop taking their medicine, > and the chemical imbalance is a sort of shock to their system and > they act out violently. And that these acts of violence or rage make > people think that " they need their medicine " when in fact their body > is going through withdrawal. > > > > I want to snap Donovan into our world naturally and soon, with out > causing so much stress on his siblings. (His tantrums make the other > kids cry and get scared>) > > > > I hope someone can relate to my situation and give me some advice > on how to help my son. I would also like to know what services your > children get through the school district and if you get daily living > skills assistance also and if so, how did you get those services. > > > > Thanks for taking the time to read my story. > > > > a Calderon > > > > > > > > > > > > > > > > >__________________________________________________________ > > This e-mail has been scanned by MCI Managed Email Content Service, > using Skeptic technology powered by MessageLabs. For more > information on MCI's Managed Email Content Service, visit http:// > www.mci.com. > > >__________________________________________________________ > > >_________________________________________________________ _____________ > This e-mail has been scanned by MCI Managed Email Content Service, using Skeptic technology powered by MessageLabs. For more information on MCI's Managed Email Content Service, visit http:// www.mci. com. >_________________________________________________________ _____________ >_________________________________________________________ _____________ > This e-mail has been scanned by MCI Managed Email Content Service, using Skeptic technology powered by MessageLabs. For more information on MCI's Managed Email Content Service, visit http:// www.mci. com. >_________________________________________________________ _____________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 19, 2008 Report Share Posted September 19, 2008 http://www.909shot.com/Issues/hotlots.htm Vaccine Adverse Event Reporting System (VAERS) & "Hot Lots" Access VAERS Database Online NVIC has served as a consumer watchdog on the implementation of The National Vaccine Injury Act of 1986, (PL99-660), which among other things created a centralized surveillance system to which parents, physicians and vaccine manufacturers could report adverse events occurring within thirty days of vaccination. NVIC has assisted many parents in reporting adverse events following vaccination as many doctors refuse to make a report. It is estimated that only 10% of all doctors report a severe health problem which occurs after a drug or vaccine is given to a patient. In May 1990 we started to track DPT vaccine lot numbers when parents reported their child¢s hospitalization, injury or death following vaccination to NVIC. Evaluating adverse event reports from more than 90 families, we found multiple serious reports were from the same vaccine lot numbers. NVIC made three separate presentations to government advisory committees between 1990 and 1993, but no substantive action was ever taken by the FDA or CDC. Upon further investigation when the VAERS computer data became available through the Freedom of Information Act, we found (1) a lack of reporting by health care providers; (2) a lag time between when the adverse event occurred and when the report is filed; (3) data entry errors; (4) duplicate reports; (5) inadequate follow-up by the government of reported serious injuries and deaths; (6) many lots with very high numbers of reports; and (7) no recall of any lot of vaccine. We do not know how many doses of vaccine are in each lot because the FDA and the drug companies do not release this information to the public. Therefore, it is impossible to precisely compare one lot to another for reactivity. The old, whole cell DPT vaccine is no longer used in the United States. The U.S. now uses an acellular version of the pertussis vaccine which is a more purified vaccine. In the past fifty years reports of "hot lots" of vaccines, those that appear to be associated with more injuries and deaths than others, have been reported in the United States and Europe. For many years, NVIC used a computer programmer to analyze the data to determine if "hot lots" were appearing. Because the data is now available on-line, we suggest you search or download the database and check the lot numbers your child is to receive, prior to your doctor appointment. Most doctors can give you the lot numbers on the vaccines they are currently using in their office. If you suspect that you or your child has experienced a vaccine reaction, report that reaction to the government at the Vaccine Adverse Events Reporting System. Due to reporting of adverse events, the rotavirus vaccine was removed from the market for causing bowel obstructions in infants and children. You can also report a reaction to the National Vaccine Information Center. We have kept a vaccine adverse event database since 1982. To report a reaction to NVIC, click here. WHAT CAN I DO? Become a member of the National Vaccine Information Center (NVIC) and a subscriber to THE VACCINE REACTION. You will be kept up to date on the latest developments in vaccine research, policymaking and laws. You will receive newsletters and action alerts that allow you to participate at the national, state and local level in the growing vaccine safety movement. As a member, you will receive the satisfaction of knowing you are part of this historic movement launched in 1982 by the founding parents of NVIC to help educate other parents and save children from vaccine death and injury. http://www.909shot.com/Issues/hotlots.htmSincerelyRuePenn--- Subject: Re: New to GroupTo: AutismBehaviorProblems Date: Thursday, September 18, 2008, 9:00 AM On vaccinations I would seek all the medical opinions and support you can. Ask every clinic,Dr. ect. and keep asking. I would also be very informed of all the information there is about safety issues without vaccinations. Make lots of calls to clinics and Dr.s for medical advice on vaccinations. Some Church social services may have info on the non-vaccination stance. State your concerns and needs,keep asking. Be safe and informed of all your options.Best wishes,Tishanne-- In AutismBehaviorProbl emsyahoogroups (DOT) com, a Calderon <lcalderon@. ..> wrote:>> Hi Tishanne,> > I'm curiouis to know how your children are functioning, especially since they are much older than mine. Like I said before I often wonder and worry about the future. I would als like to get more information on vaccinating on an alternative schedule for my 4 month and two year old. If you know where I should look, please tell me. My two year old has only had one "thimersol-free" vaccine. But we go from doctor to doctor because I cannot find anyone to support my beliefs and be a partner to help my kids- just criticism and usually "the American academy of pediatrics" says spiels with each new PCP visit.> > a> > ____________ _________ _________ __> From: AutismBehaviorProbl emsyahoogroups (DOT) com [mailto:AutismBehaviorProbl emsyahoogroups (DOT) com] On Behalf Of tishannepatterson> Sent: Wednesday, September 17, 2008 1:28 AM> To: AutismBehaviorProbl emsyahoogroups (DOT) com> Subject: Re: New to Group> > > Hi a, Im happy you joined this group. 3 of my 8 children are> autistic. A 20yr daughter,16yr son,10yr son. My 20yr lost her speech> and quit eye contact around 1yr. She always had trouble with> vaccinations. She had high fevers after and got very sick. Finally> her pediatrician had to give her doses of human gamma globulin to aid> or counter act her immuno deficiancy following vaccinations. I quit> the vaccination schedule,exempted- under advice of our Dr. My 16yr> son had a similar experience with vaccinations and had high fevers> with convulsions. I believe vaccinations played a significant part in> their autism. My 10yr son is a twin, was a preemie with a birth> weight under 2lbs. I really relate to you and share your concerns> about our children,their developement and our families relationships> and interactions when our children are autistic. Thanks for sharing> your lives. Sending you the warmth of understanding,> Tishanne> -- In AutismBehaviorProbl emsyahoogroups (DOT) com<mailto:AutismBehav iorProblems% 40yahoogroups. com>,a Calderon> <lcalderon@> wrote:> >> > Hi Everyone,> >> > My name is a, I am a 24 year old mother of 4 kids aged 4> months (boy), 2 years (girl), 4 years (boy with ASD) and 5 years> (girl). My 4 year old son Donovan was diagnosed with Autism when he> was 25 months old. He never really spoke as a baby other than mama> and dada (with no meaning), but he didn't start to lose eye contact> or start stimming until after he had his 12 month and 18 month> vaccinations. I don't fully believe that these shots caused my son's> autism- but I know they played a role is poisoning his system. Since> his diagnosis he has made much less progress than we had hoped. The> most progress he has made is regaining eye contact, bringing things> he wants opened to us, pushing a chair to climb and get something he> wants and sometimes pushing buttons on a communicative device with> pictures to say what he wants every now and then. He is non-verbal> with no real functional communication for daily needs and desires.> We tried ABA, PECS and signing for the first year and he wouldn't> respond. He throws frequent tantrums, often for no apparent reason.> When he gets upset he will sometimes hit at me. Donovan is> affectionate though. He will come to me for hugs and kisses and> likes to be tickled. But sometimes when giving or receiving> affection, he will pinch me or grab and pull my hair all of the> sudden- when he does this, he is still smiling and does not seem to> understand that he is hurting me. I tell him "no" and I think he> understands what no is, but he continues to do this. He has recently> pulled my mom's hair and she was shocked- I never told her that he> pulled my hair because my family is already weary to be around him> because of the behaviors he exhibits. Donovan also stims all the> time. He stims by flicking his spit with his finders in front of his> eyes and especially in streams of indoor and outdoor light. When he> stims he gets so excited that he stands on his toes and you can> almost feel the excitement and energy building up in him and he says> "aaahhhhh" and other vocalizations when stimming.. He also gets> "overstimulated when he stims and will go from being excited to> crying really loudly. Donovan also likes to knock things off of> tables, turn cups filled with liquid upside down, and "mess up"> things by moving them back and forth real fast under his hands. He> used to be totally infatuated with strings and would flick them in> front of his face, now he only flicks them in light and doesn't seem> to be obsessed with them anymore (which is great, he used to unbraid> the hair on his older sisters dolls, tear it out and leave it all> over the house and tear up the strings in carpet.> >> > I often think about his future and fear that my family will never> truly be comfortable around him because he requires so much attention> and tends to destroy their houses. I fear that as he gets older> that, since he is so big (he's only 4 taller than my 5 year old and> weights 49 pounds from height and stature, not fat) that his dad and> I won't be able to physically handle him like we can now, especially> during tantrums.> >> > I often hear how autistic kids tend to have an area they excel at> or have high interest in- I have yet to see what that area might be> for Donovan. I hope and pray that he will grow to be accepted by my> family and his peers, communicate with us in some way and stop his> aggressive behaviors. I have also heard that stimming is> neurodegenerative, so when he tries to stim all the time, I keep> thinking that he is ruining his brain or something by doing it.> >> > It is difficult to say the least, raising four kids that already> have health issues like sever eczema and asthma, sleeping issues,> etc. then to worry about Donovan all the time and how his future will> be is enough to really stress me out. On top of everything else, I> go to school full-time, work full-time and never seem to bet sleep.> My children's father is a tremendous help, but both of us are> exhausted and we often get discouraged at the lack of progress for> Donovan.> >> > I do not want to medicate my son. I have read how often these> stimulants and anti-depressants are medicines made for adults, but> given to children in lower doses- with no real un-biased studies of> their efficacy in children. I have also seen first hand how children> who are on medicines as kids, grow up and stop taking their medicine,> and the chemical imbalance is a sort of shock to their system and> they act out violently. And that these acts of violence or rage make> people think that "they need their medicine" when in fact their body> is going through withdrawal.> >> > I want to snap Donovan into our world naturally and soon, with out> causing so much stress on his siblings. (His tantrums make the other> kids cry and get scared>)> >> > I hope someone can relate to my situation and give me some advice> on how to help my son. I would also like to know what services your> children get through the school district and if you get daily living> skills assistance also and if so, how did you get those services.> >> > Thanks for taking the time to read my story.> >> > a Calderon> >> >> >> >> >> >> >> >> ____________ _________ _________ _________ _________ _________ _> > This e-mail has been scanned by MCI Managed Email Content Service,> using Skeptic technology powered by MessageLabs. For more> information on MCI's Managed Email Content Service, visit http://> www.mci.com.> >> ____________ _________ _________ _________ _________ _________ _> >> > ____________ _________ _________ _________ _________ _________ _> This e-mail has been scanned by MCI Managed Email Content Service, using Skeptic technology powered by MessageLabs. For more information on MCI's Managed Email Content Service, visit http://www.mci.com.> ____________ _________ _________ _________ _________ _________ _> > ____________ _________ _________ _________ _________ _________ _> This e-mail has been scanned by MCI Managed Email Content Service, using Skeptic technology powered by MessageLabs. For more information on MCI's Managed Email Content Service, visit http://www.mci.com.> ____________ _________ _________ _________ _________ _________ _> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 20, 2008 Report Share Posted September 20, 2008 Hi a, I'm new to this group also. My son is 16 years old. I first recognized that something just wasn't " right " with him when he was only 10 months old. He would laugh really loud in his crib (in the dark) in the middle of the night, he's rock back and forth a lot, he didn't start vocalizing until he was almost 2 years old. He also didn't like being held much, and loved throwing toys everywhere, especially at people's heads! He did pull my hair on occasion, and pulled the dog and cat's hair, tails, etc. I remember how GREAT his memory was at a very young age. He still has a tremendous memory, and has always been good at remembering anything he takes an interest in. However, he has lots of other problems in school with various subjects. I have him getting help with Life Skills now that he's in 10th grade. For some stupid reason, the school systems in Alabama REQUIRE that a child be on at least ONE prescribed medication to qualify for any kind of help at school. It is a stupid law in my opinion, but that is the way it is... I have tried to get help for my son ever since he was born, and I knew something wasn't right. I don't want to try to discourage you, but you will have a BATTLE to endure throughout your child's life.... The BEST advice I can give you is to EDUCATE yourself, your family, and do EVERYTHING you can possibly do for your child. They didn't ask to be brought into this world, especially with a handicap... They have NO ONE else but YOU to be their VOICE for them. They CAN'T speak for themselves. They don't UNDERSTAND WHY they do what they do, or HOW to change their behavior without HELP to learn. Fortunately, more people are hearing about Autism because of US (PARENTS). My son is almost 6 feet tall and because of all the medicines he has been on over the YEARS...he has gained a LOT of weight. He is bigger and stronger than me or my daughter. His dad hasn't had any contact with us or seen Bronson in MANY years. We receive NO support or money from him. We don't even know where he is.. I have NO other family support, etc... My parents are both dead. My mother and father in law are both dead (many years ago). I have NO ONE except me and my daughter... It has been VERY hard. My son has his moments of rage, he's been VERY destructive to our home, I can't keep tools or scizzors, knives, etc, etc. NOTHING... I learned quite painfully that IF he wants to, he can make a WEAPON out of ANYTHING...regardless of how much stuff I throw out... I can't imagine what the FUTURE will be for ANY of us, because I can't think that far in advance...I ONLY live for TODAY...sometimes just for each minute, since he's VERY UNPREDICTABLE... So PLEASE, just EDUCATE yourself about Autism, educate your parents (give them books). READ, READ, READ... JOIN SUPPORT GROUPS, ANYTHING. GET A THERAPIST, TALK TO A PHYCOLOGIST (not phychiatrist).There's a BIG difference. See LINK BELOW: http://www.mind.org.uk/Information/Factsheets/History+of+mental+health/A+brief+g\ uide+to+whos+who+in+mental+health.htm#Psychiatrist This group is WONDERFUL!! My thoughts and prayers are with ALL of you and your children!! :-) DIANE > > Hi Everyone, > > My name is a, I am a 24 year old mother of 4 kids aged 4 months (boy), 2 years (girl), 4 years (boy with ASD) and 5 years (girl). My 4 year old son Donovan was diagnosed with Autism when he was 25 months old. He never really spoke as a baby other than mama and dada (with no meaning), but he didn't start to lose eye contact or start stimming until after he had his 12 month and 18 month vaccinations. I don't fully believe that these shots caused my son's autism- but I know they played a role is poisoning his system. Since his diagnosis he has made much less progress than we had hoped. The most progress he has made is regaining eye contact, bringing things he wants opened to us, pushing a chair to climb and get something he wants and sometimes pushing buttons on a communicative device with pictures to say what he wants every now and then. He is non-verbal with no real functional communication for daily needs and desires. We tried ABA, PECS and signing for the first year and he wouldn't respond. He throws frequent tantrums, often for no apparent reason. When he gets upset he will sometimes hit at me. Donovan is affectionate though. He will come to me for hugs and kisses and likes to be tickled. But sometimes when giving or receiving affection, he will pinch me or grab and pull my hair all of the sudden- when he does this, he is still smiling and does not seem to understand that he is hurting me. I tell him " no " and I think he understands what no is, but he continues to do this. He has recently pulled my mom's hair and she was shocked- I never told her that he pulled my hair because my family is already weary to be around him because of the behaviors he exhibits. Donovan also stims all the time. He stims by flicking his spit with his finders in front of his eyes and especially in streams of indoor and outdoor light. When he stims he gets so excited that he stands on his toes and you can almost feel the excitement and energy building up in him and he says " aaahhhhh " and other vocalizations when stimming. He also gets " overstimulated when he stims and will go from being excited to crying really loudly. Donovan also likes to knock things off of tables, turn cups filled with liquid upside down, and " mess up " things by moving them back and forth real fast under his hands. He used to be totally infatuated with strings and would flick them in front of his face, now he only flicks them in light and doesn't seem to be obsessed with them anymore (which is great, he used to unbraid the hair on his older sisters dolls, tear it out and leave it all over the house and tear up the strings in carpet. > > I often think about his future and fear that my family will never truly be comfortable around him because he requires so much attention and tends to destroy their houses. I fear that as he gets older that, since he is so big (he's only 4 taller than my 5 year old and weights 49 pounds from height and stature, not fat) that his dad and I won't be able to physically handle him like we can now, especially during tantrums. > > I often hear how autistic kids tend to have an area they excel at or have high interest in- I have yet to see what that area might be for Donovan. I hope and pray that he will grow to be accepted by my family and his peers, communicate with us in some way and stop his aggressive behaviors. I have also heard that stimming is neurodegenerative, so when he tries to stim all the time, I keep thinking that he is ruining his brain or something by doing it. > > It is difficult to say the least, raising four kids that already have health issues like sever eczema and asthma, sleeping issues, etc. then to worry about Donovan all the time and how his future will be is enough to really stress me out. On top of everything else, I go to school full-time, work full-time and never seem to bet sleep. My children's father is a tremendous help, but both of us are exhausted and we often get discouraged at the lack of progress for Donovan. > > I do not want to medicate my son. I have read how often these stimulants and anti-depressants are medicines made for adults, but given to children in lower doses- with no real un-biased studies of their efficacy in children. I have also seen first hand how children who are on medicines as kids, grow up and stop taking their medicine, and the chemical imbalance is a sort of shock to their system and they act out violently. And that these acts of violence or rage make people think that " they need their medicine " when in fact their body is going through withdrawal. > > I want to snap Donovan into our world naturally and soon, with out causing so much stress on his siblings. (His tantrums make the other kids cry and get scared>) > > I hope someone can relate to my situation and give me some advice on how to help my son. I would also like to know what services your children get through the school district and if you get daily living skills assistance also and if so, how did you get those services. > > Thanks for taking the time to read my story. > > a Calderon > > > > > > > > ______________________________________________________________________ > This e-mail has been scanned by MCI Managed Email Content Service, using Skeptic technology powered by MessageLabs. For more information on MCI's Managed Email Content Service, visit http://www.mci.com. > ______________________________________________________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 22, 2008 Report Share Posted September 22, 2008 Hi a, I'm late but I wanted to welcome you to the list anyway. I am Astrid, a 22-year-old woman with ASD. My autism wasnt'diagnosed till about 1 1/2 years ago, even though my parents said at the diagnostic interview that they'd thought I had some signs when I was as young as two years. They always blamed other things though, since I was born prematurely, am blind and am highly intelligent. I have/had some of the issues your son has and then some I don't. In fact I coudl be one of those autistics who are told we dont'know what " real " autism is because, being able to write coherently ont he Internet, we cannot possibly have other issues. Let me give you some hope in the communication area: while I spoke early (even fot NTs, I spoke in short sentences by one year of age, and I have only mild communication difficulties), I know several autistics who cannot speak even as adults but who still learned a workable communication system. If pictures are still too abstract for you rson to work with, you might work with real objects for a while and then along with the pictures, so he learns to make the connection. You know, to some autistics a picture of, say, a drink just isn't the same as a real drink, and they want the real drink, not a picture of a drink, so why point at the picture? As for stimming, I stim a lot in one way or another, and have very occasional self-injurious behaviors (used to be much more frequently). While obviously it's not socially attractive, I never heard that stimming, if not physically dangerous like self-injury, would be harmful to the nervous system or anything. Many autistics stim to regulate their sensory processing, so etiher to get sensory input when they are under-aroused, or to unwind from sensory overload. I also have some aggression. Currently it's mostly just screaming and I stop when someone tells me to (my biggest problem si I begin all over again a minute later). I used to get physically aggressive, including hitting and bitign (myself and my sister, mostly) and it would not at all surprise me if I hair-pulled too (since hair twirling is currently my main stim) I don't know whether I did it to extended family, etc. though. I don't know how I stopped but I must've been quite old since I remember still having some aggression when I was about 11. I'm not physically aggressive now. Since I wasn't diagnosed till 1 1/2 years ago, I never got any of the specialized interventions. As a child, I got some speech, PT and probably OT because of my blindness, but nothing targeted at my ASD-specific issues of course. As for medication, I'm pretty much against it, too, but tha t is mostly cause, in my case, it's always been that drugs were more of a substitute for proper support. Like, last year, I was on an antipsychotic called Risperdal, which is frequently prescribed to autistics who have aggression. The thing is, I took medication when it was obvious to everyone that the reason for my stress and subsequent aggression was a really ill-prepared move to another city, into independent living for the first time, starting a new school, etc. Well, in part it's an " if I knew then " situation, but I knew, and so did eveyrone else, that really the transition was just far too major for me. (Some had hoped that medicating would get me through the transition and I could go off meds after I'd transitioned.) I would never go on meds again jsut to ease a transition that everyone should know was ill-prepared anyway, because that is not what meds are for. I am now only on as-needed oxazepam (a benzodiazpine that really just makes me fall asleep and have a major meltdown the minute it's worn out, but my doctor doesnt'seem to care) and don't plan on going on any daily meds unless it's clear the issue cannot be settled any other way. Drugs are not a substitute for services. Well it's nice to meet you. I'm somewhat amazed to find someone hardly older than me who is already a mother of four. I always wanted to be a Mom myself, but now that I'm already 22 and still having meltdowns, I've come to think that maybe parenting isn't for me, cause I wouldn't want to subject my child to a screaming mother at every bit of stress. Astrid astrid@... http://www.astridvanwoerkom.com/ I'm protected by SpamBrave http://www.spambrave.com/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 22, 2008 Report Share Posted September 22, 2008 Dear Astrid, thank you for sharing your story with me. You are an inspirational person, being that you have so many challenges and are able to communicate and even attempt independent living. Thanks for the suggestion to use real objects instead of pictures. I will try this tonight when I get home. When you exhibit self-injurious behaviors, what makes you do this? Is it a result of being upset or is it an uncontrollable urge? How about screaming? My son will start screaming and then cry for no reason. When you scream- are you upset or just over or under-stimulated? My son also likes to play with his hair. We keep it cut short though, but up until the age of 2 we let his hair grow (he had beautiful curls). Back then he always twirled his hair. Now he mostly pats it and feels it. However when he stims on his hair he doesn’t make the vocalizations like he does when stimming in light or on strings. Thanks again for sharing your story- I hope that one day your situation will get better and might be able to have a family. Thanks, a From: AutismBehaviorProblems [mailto:AutismBehaviorProblems ] On Behalf Of Astrid Sent: Monday, September 22, 2008 9:13 AM To: AutismBehaviorProblems Subject: Re: New to Group Hi a, I'm late but I wanted to welcome you to the list anyway. I am Astrid, a 22-year-old woman with ASD. My autism wasnt'diagnosed till about 1 1/2 years ago, even though my parents said at the diagnostic interview that they'd thought I had some signs when I was as young as two years. They always blamed other things though, since I was born prematurely, am blind and am highly intelligent. I have/had some of the issues your son has and then some I don't. In fact I coudl be one of those autistics who are told we dont'know what " real " autism is because, being able to write coherently ont he Internet, we cannot possibly have other issues. Let me give you some hope in the communication area: while I spoke early (even fot NTs, I spoke in short sentences by one year of age, and I have only mild communication difficulties), I know several autistics who cannot speak even as adults but who still learned a workable communication system. If pictures are still too abstract for you rson to work with, you might work with real objects for a while and then along with the pictures, so he learns to make the connection. You know, to some autistics a picture of, say, a drink just isn't the same as a real drink, and they want the real drink, not a picture of a drink, so why point at the picture? As for stimming, I stim a lot in one way or another, and have very occasional self-injurious behaviors (used to be much more frequently). While obviously it's not socially attractive, I never heard that stimming, if not physically dangerous like self-injury, would be harmful to the nervous system or anything. Many autistics stim to regulate their sensory processing, so etiher to get sensory input when they are under-aroused, or to unwind from sensory overload. I also have some aggression. Currently it's mostly just screaming and I stop when someone tells me to (my biggest problem si I begin all over again a minute later). I used to get physically aggressive, including hitting and bitign (myself and my sister, mostly) and it would not at all surprise me if I hair-pulled too (since hair twirling is currently my main stim) I don't know whether I did it to extended family, etc. though. I don't know how I stopped but I must've been quite old since I remember still having some aggression when I was about 11. I'm not physically aggressive now. Since I wasn't diagnosed till 1 1/2 years ago, I never got any of the specialized interventions. As a child, I got some speech, PT and probably OT because of my blindness, but nothing targeted at my ASD-specific issues of course. As for medication, I'm pretty much against it, too, but tha t is mostly cause, in my case, it's always been that drugs were more of a substitute for proper support. Like, last year, I was on an antipsychotic called Risperdal, which is frequently prescribed to autistics who have aggression. The thing is, I took medication when it was obvious to everyone that the reason for my stress and subsequent aggression was a really ill-prepared move to another city, into independent living for the first time, starting a new school, etc. Well, in part it's an " if I knew then " situation, but I knew, and so did eveyrone else, that really the transition was just far too major for me. (Some had hoped that medicating would get me through the transition and I could go off meds after I'd transitioned.) I would never go on meds again jsut to ease a transition that everyone should know was ill-prepared anyway, because that is not what meds are for. I am now only on as-needed oxazepam (a benzodiazpine that really just makes me fall asleep and have a major meltdown the minute it's worn out, but my doctor doesnt'seem to care) and don't plan on going on any daily meds unless it's clear the issue cannot be settled any other way. Drugs are not a substitute for services. Well it's nice to meet you. I'm somewhat amazed to find someone hardly older than me who is already a mother of four. I always wanted to be a Mom myself, but now that I'm already 22 and still having meltdowns, I've come to think that maybe parenting isn't for me, cause I wouldn't want to subject my child to a screaming mother at every bit of stress. Astrid astridastridvanwoerkom http://www.astridvanwoerkom.com/ I'm protected by SpamBrave http://www.spambrave.com/ ______________________________________________________________________ This e-mail has been scanned by MCI Managed Email Content Service, using Skeptic technology powered by MessageLabs. For more information on MCI's Managed Email Content Service, visit http://www.mci.com. ______________________________________________________________________ ______________________________________________________________________ This e-mail has been scanned by MCI Managed Email Content Service, using Skeptic technology powered by MessageLabs. For more information on MCI's Managed Email Content Service, visit http://www.mci.com. ______________________________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 23, 2008 Report Share Posted September 23, 2008 Hi a, My screaming is usually when I'm upset like when there's an unexpected change or the like, but it can also occur when I'm overstimulated. Even then it's clear to others why I scream, so I don't usually start screaming out of the blue. The self-injury is not as obviously provoked, but I always know why it happens. If your son has aggression/self-injury that happens totally out of the blue, I'd suggest you discuss this with his medical doctor to rule out any physical causes. Many autistics, especially those who don't have speech, will respond to pain by becoming self-injurious or aggressive (sort of to numb out the pain), and in some cases, even seizure activity may trigger this behavior (I myself don't have seizures). Even so, when you don't know the reason it doesnt'mean there is none. Your son is non-verbal and hasn't yet found an effective communication system, so that may also be the reason. By the way, I'm not living independently anymore. I fell apart mentally three months after moving into independent living and was subsequently hospitalized. I hope to find some form of supported living, but there are waiting lists and most places won't take a blind, autistic person with behavioral difficulties but no intellectual impairment. Astrid astrid@... http://www.astridvanwoerkom.com/ Re: New to Group Hi a, I'm late but I wanted to welcome you to the list anyway. I am Astrid, a 22-year-old woman with ASD. My autism wasnt'diagnosed till about 1 1/2 years ago, even though my parents said at the diagnostic interview that they'd thought I had some signs when I was as young as two years. They always blamed other things though, since I was born prematurely, am blind and am highly intelligent. I have/had some of the issues your son has and then some I don't. In fact I coudl be one of those autistics who are told we dont'know what " real " autism is because, being able to write coherently ont he Internet, we cannot possibly have other issues. Let me give you some hope in the communication area: while I spoke early (even fot NTs, I spoke in short sentences by one year of age, and I have only mild communication difficulties), I know several autistics who cannot speak even as adults but who still learned a workable communication system. If pictures are still too abstract for you rson to work with, you might work with real objects for a while and then along with the pictures, so he learns to make the connection. You know, to some autistics a picture of, say, a drink just isn't the same as a real drink, and they want the real drink, not a picture of a drink, so why point at the picture? As for stimming, I stim a lot in one way or another, and have very occasional self-injurious behaviors (used to be much more frequently). While obviously it's not socially attractive, I never heard that stimming, if not physically dangerous like self-injury, would be harmful to the nervous system or anything. Many autistics stim to regulate their sensory processing, so etiher to get sensory input when they are under-aroused, or to unwind from sensory overload. I also have some aggression. Currently it's mostly just screaming and I stop when someone tells me to (my biggest problem si I begin all over again a minute later). I used to get physically aggressive, including hitting and bitign (myself and my sister, mostly) and it would not at all surprise me if I hair-pulled too (since hair twirling is currently my main stim) I don't know whether I did it to extended family, etc. though. I don't know how I stopped but I must've been quite old since I remember still having some aggression when I was about 11. I'm not physically aggressive now. Since I wasn't diagnosed till 1 1/2 years ago, I never got any of the specialized interventions. As a child, I got some speech, PT and probably OT because of my blindness, but nothing targeted at my ASD-specific issues of course. As for medication, I'm pretty much against it, too, but tha t is mostly cause, in my case, it's always been that drugs were more of a substitute for proper support. Like, last year, I was on an antipsychotic called Risperdal, which is frequently prescribed to autistics who have aggression. The thing is, I took medication when it was obvious to everyone that the reason for my stress and subsequent aggression was a really ill-prepared move to another city, into independent living for the first time, starting a new school, etc. Well, in part it's an " if I knew then " situation, but I knew, and so did eveyrone else, that really the transition was just far too major for me. (Some had hoped that medicating would get me through the transition and I could go off meds after I'd transitioned.) I would never go on meds again jsut to ease a transition that everyone should know was ill-prepared anyway, because that is not what meds are for. I am now only on as-needed oxazepam (a benzodiazpine that really just makes me fall asleep and have a major meltdown the minute it's worn out, but my doctor doesnt'seem to care) and don't plan on going on any daily meds unless it's clear the issue cannot be settled any other way. Drugs are not a substitute for services. Well it's nice to meet you. I'm somewhat amazed to find someone hardly older than me who is already a mother of four. I always wanted to be a Mom myself, but now that I'm already 22 and still having meltdowns, I've come to think that maybe parenting isn't for me, cause I wouldn't want to subject my child to a screaming mother at every bit of stress. Astrid astrid@...<mailto:astrid%40astridvanwoerkom.com> http://www.astridvanwoerkom.com/ I'm protected by SpamBrave http://www.spambrave.com/ ______________________________________________________________________ This e-mail has been scanned by MCI Managed Email Content Service, using Skeptic technology powered by MessageLabs. For more information on MCI's Managed Email Content Service, visit http://www.mci.com. ______________________________________________________________________ ______________________________________________________________________ This e-mail has been scanned by MCI Managed Email Content Service, using Skeptic technology powered by MessageLabs. For more information on MCI's Managed Email Content Service, visit http://www.mci.com. ______________________________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 6, 2009 Report Share Posted March 6, 2009 --- Tommy is being casted at Akron Children's Hospital in Ohio. His curve was 68.2 but with the first cast xray showed 33.1. I'm new to this so I dont know if he has a left curve or right curve. If I stand behind him his ribs protrude on the left side. Is there any way I can send pics of him in his cast and before the cast to the site? I saw some pics of other children, but am not sure how to post pics on here. Thanks again. Also, does anyone on here know of any dr.s in Ohio who are Mehta trained? Thanks again, April In infantile_scoliosis , " Hyatt " wrote: > > Hi April & Tommy! > > Welcome to the CAST Support Group. May I recommend that you go to > www.infantilescoliosis.org <http://www.infantilescoliosis.org/> for more > info on Early Treatment w/ Mehtas EDf casting. Please go to the Resource > Page and read a published, medical journal titled " Growth as a corrective > force in the early treatment of progressive infantile scoliosis, " by Mehta. > Another great resource in understanding the principles of this gentle, > corrective treatment is " A New Direction, " DVD. Both of these items will > help you better understand the differences between Risser casting and ET w/ > Mehtas modified version of EDf (elongation, derogation, flexion) casting. > > Risser casting is a technique to temporarily maintain scoliosis curvatures > in juveniles & adolescents. Early Treatment w/ Mehtas EDF can rid the child > of the deformity, gently & permanently. Where is Tommy being casted? > > HRH > > > > _____ > > From: infantile_scoliosis > [mailto:infantile_scoliosis ] On Behalf Of athompson405 > Sent: Wednesday, March 04, 2009 12:53 PM > To: infantile_scoliosis > Subject: New to group > > > > Hi my name is April, and my son Tommy has scoliosis. He is 4 years old and > just got his first cast. I noticed on this site that almost everyone here is > talking about plaster casts, and my son has a fiberglass Risser cast. Does > anyone know anything about this type of cast? Is it very different from the > EDF casts everyone here seems to know about? We took the watch and wait > approach. He was first diagnosed when he was 7 months old and was braced > from 1 1/2 to 4 yrs. When that was no longer working I decided to go ahead > with the casting as there seemed to be no other option. His dr. said that if > i didnt do the casting he would need growing rods within a year, but with > the casting we could put off the rods until he is 10 or older. I am praying > for a miracle that he wont need the rods ever, but I guess we will see... > Any insight you have will be appreciated thank you in advance, April > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 16, 2009 Report Share Posted May 16, 2009 Thanks to everyone who replied. i just wanted to answer some of the questions. Ashlee was xrayed standing up twice now. I'm not sure what method they are casting in. But after reading your notes i'm going to call on momday and just ask... Our Dr. is Gordon out of ST. s Hospital/Duluth clinic. If any one knows anything about him love to here it. Ashlee is also working with a pediatric cardiologist for a VSD and a ASD heart murmur. They were planning to do the Heart surgery first but decided to wait until she is finished with her casts. Which is looking to be next fall or winter. We havn't done an MRI yet, Dr. Gordon did tell us that the chest wall and plate looked normal. Ashlee does turn one of her feet out when she walks. Not sure if that is from her back or a balance issue. Well count done is 4 day to go until casting. thanks again Jann (mom to Ashlee, 19 months, getting first cast May 19th) > > > From: blubrd11 <blubrd11yahoo (DOT) com> > Subject: [infantile_scoliosi s] new to group > To: infantile_scoliosis @yahoogroups. com > Date: Friday, May 15, 2009, 4:11 AM > > > > > Hello everyone. I'm new here and have been reading all your posts for the last couple of weeks now. I found out that my daughter, Ashlee (19 months) has a 25 degree curve. I noticed the bump on her back about when she was 9-11 months old. Our family Doctor, at the time, told us that it didn't look like anything was wrong but he would take an xray when when she started to walk. Well she didn't walk until she was 16 months old. At her 18 month check up i asked again to have an xray taken. Her New Doctor did the xray and noticed the curve and set up an appointment with a Orthopaedics/ Pediatric Orthopaedics specialist two days later. I was impressed we got in so fast. He suggested doing two castings first. He told me about how he was getting great results from them. Ashlee goes for her first cast next Tuesday. I'm scared for her and not sure what to do once it's on. Thanks everyone for telling there stories they have helped me be more confortable about > whats to come. I will post again once things start going. > > thanks again > Jann > (Ashlee, 19 months first cast will be May 19th) > Quote Link to comment Share on other sites More sharing options...
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