kim

Mustang Carole or anyone interested in the ongoing research on thimerosal, Did you listen to the Pessah lecture?

Jeff, I had read that too, and posted it under the articles thread, but like so many of the links there, when I went back to copy it, it didn't work. I think this is the article? http://www.newsinferno.com/archives/1568

Just for discussion purposes, this is what I'm getting out of it. When you get your first strep infection, it may take a long time to see the symptoms of PANDAS because the body is slow to mount an immune reponse, having h never delt with strep A. The immune system forms memory however, so with the second infection it recognizes the invader more quickly. Think of vaccinations. A baby gets dtap vaccine at 2 mos. and forms some antibodies, then, with the second injection at 4 mos. the body has "seen" the antigen before, and responds with more antibodies. By the third injection at 6 mos. the immune system has seen these antigens (what its contained in the vaccine..diptheria, acellular pertussis, tetanus) and recoginizes it even more quickly, and mounts the antibody response more quickly again. This is part of the TH2 arm of the immune system (forms memory to antigen), and why vaccines are given in series. An infant will not have what is considered full immunity after the first injection. The problem with PANDAS and strep, is part of the brain, has a surface protein that resembles strep and the immune system gets confused, and the antibodies attack the brain instead of, or along with, the strep. This is the autoimmune response, or sometimes referred to as molecular mimickry(sp?) The only real way to avoid this is to prevent the strep infection to begin with, hence prophylatic antibiotics. Did you notice where Dr. Swedo talks about the PANDAS reactions happpening more quickly with repeat infections? I think that the strep may loss the battle against the antibiotic, but if the immune system is sensing the brain surface as the threat, it keeps mounting the attack. Bolstering the immune system, and keeping the body in as healthy of a state as possible, may help prevent the strep in the first place. I'm not sure that "boosting" would make a difference, in what the body is doing anyway, which is attacking the wrong thing. I can see where bolstering the immune system after the infection has occured, may not be a good idea. That is where the modulating effect may be helpful, in lesseing the TH2 response. Does that make sense to anyone?? Cheri, do you feel people with TS/tic disorders are more prone to autoimmune problems as a whole (type one diabetes, PANDAS, chrons etc.) Do you think there are certain supplements that should be avoided?

Jkc, I would agree mild tics, like eye movements get worse as the day goes on, but at it's worst, a "bigger tic," could start as soon as their feet hit the floor in the morning. Wanted to add to the above post, my youngest son, also said that being in so many stores lately, made his tics "act up." He has always told me that the smell of stores bothers him a lot. We have had to physically leave the mall. He seems to be more chemically sensitive than my oldest son.

That was one of the most interesting things I have listened to, in a long time. I'm wondering how many parents will be having their kids come home from school and hold their arms out in front of them with their eyes closed! I was amazed when she made them remark about other Dr.s saying "you're not buying into this, are you?" I wouldn't have thought that someone in her position would have to deal with the same thing we have all felt when dealing with many Dr.s! Her remarks about not being able to replicate in animals was interesting, and the research that was done looking for a protein, when in fact it was a glycoprotein, too. It really helped shed a new light on the contradictory findings during different studies. Michele, where did I miss the info about glucosimine? I

Lenny, I have been through this with 2 sons now. My oldest is soon to turn 15 and youngest is soon to turn 11. I used to say that I thought my boys had mild tics. Now I think they probably have had about the same amt. of tic symptoms that the majority of children have. I was comparing their tics to what most people think of as TS (what we have all seen in the media) when I was using the "mild" description. We did not have any huge flair ups through puberty with my oldest son. His voice changed quite some time ago, he's darn near 6 ft. tall, and he's is wonderful. His drivers training instructor just made the remark that he is about 110% above average. He is so capable, I'm amazed at times that this boy is only 14. He will occasionally stretch his neck in the motion that many here have described. We will even have an occasional head shake. If he gets any kind of a chip or rough spot on a tooth, he will have a hard time leaving it alone, and if left unchecked, he will get a canker. He has used very little supplements this summer, and has eaten a fair amt of junk food. We do use Bonnie's vits. and extra mag, zinc, fish oil etc. when he seems to be getting twitchy. EPSOM salt baths are especially nice, for those little flair ups too. My youngest son shared some interesting stuff with me yesterday. He started putting his teeth on his bottom lip and making a vvvvvvv sound (sucking air in, to make the noise). It didn't sound any different then the noises kids sometimes make, but it was 50% of the day. By the day before school, he was head shaking pretty bad. This is probably the first time I have had that dreadful sinking feeling, since we started supplements with the boys. I felt like everyone else here, about him starting Jr. High, 6th grade, with something that was going to be hard for him socially, along with the fear of what was going on with him physically. He had dark circles again. Those had cleared up so nicely, when we started enzymes. By the 2nd day of school, the tics were 50% better. Yesterday, he came home and said "guess what, I only shook my head twice today!" This started a conversation about my thinking that his tics were being caused by anxiety about starting a new school, but I told him I was confused because the vvvvvvv sound started at least a week prior, and he didn't seem to be paying any attention to when school started. He was truly surprised Sat. when I told him school was only 3 days away. He said "no" he didn't think it was from being nervous about school, he thought it was allergies. He said he was wrinkling up his nose, and making the sound, because everything was itchy and it was bothering him. I was reading the messages that everyone was posting, and wondering if it was something in the air, or nerves too. I'm still confused. I would like to say that adding l carnitine back in, soaking him to the wrinkle state (which he loves) in epsom, upping his mag taurate, and a few other things (many hand packed sodium asorbate capsules) benedryl, helped speed us through this. We have had a vast reduction in symptoms and time btwn flairs since using supplements, but I don't know what the course would have been without them, so it's always hard to say. He also told me, Wed. a kid says to him "you have tourettes syndrome, don't you?" My guy said, he didn't answer him. He could see the look (probably anger) on my face and he says "Mom, he didn't say it to be mean, he said it was no big deal, about 1/2 of his friends have it." My son said a lot of kids have eye blinking and wrist shaking tics at school (I have seen this for myself, and have remarked about it here before) a few head shakers too. He said one boy has an allergy to red dye and can't have any. He talks about all of the kids that have ADHD. There is one boy who pokes and touches him all the time in one class, and can't sit still. One thing I want to remind everyone of and I think Tlk just mentioned, your child may be ticcing at home and not ticcing at school, or so little that no one really notices. We have had tics here, both ways. Only when relaxing, and bad on the ball field. As a rule, I think during a flair, they have been better when engrossed in something I'm going to end my short story here Lenny, but I hope I this was helpful in pointing out, that our kids are not alone with their differences, that tics at home, may be much less in school (I used to get the same thing from friends parents and teachers...they had never seen him tic when it was SO noticable to me at home) that the alternative methods, that many here are usiing, have been remarkably helpful for my sons, and so far puberty has not been a nightmare! .

Hi Mustang Carole, Thanks for the link! Wanted to add this too. It was nice reading the findings of several studies discussed in one place. I found the info under the PANDAS section interesting. One thing that caught my eye was the statement about the blood brain barrier normally being, I think they used the phrase, tight? So, what might be compromising this more now? Just one of several questions that this article brought to mind. http://jcn.sagepub.com/cgi/reprint/21/8/678.pdf Journal of Child Neurology DOI: 10.1177/08830738060210080901 J Child Neurol 2006; 21; 678 Kendra Harris and Harvey S. Singer Tic Disorders: Neural Circuits, Neurochemistry, and Neuroimmunology

Hi bmom and jkc I am using Gr8-Dophilus from NOW brands, 4 billion potency. We have used Culturelle in the past. I switched to this brand only because I could buy it locally, instead of ordering. I think the amt. is largely based on what your needs are. I remember one parent posting that her Dr. laughed about a dose like 4 billion. He said 100 billion (or 200 billion????) would be more like it. I can't remember if her child was taking antibiotics at that time or not. I can't i magine using capsules to reach anywhere near that amt. I'm lucky to get 2 a day in my youngest son. I have also found that biotin helps him. This was discussed on another forum, as being helpful for yeast. I also remember from the time he was just a baby, this kid had the thinnest finger and toe nails. Biotin is mostly talked about in relationship to healthy hair and nails. bmom, I have always been confused on the yogurt thing. One thing that makers of probiotics suggest, is that it's hard for the bacteria to survive the stomach acid and pancreatic secreations, yet many feel kefir is wonderful and commercial yogurt claims to help repopulate the gut. However, most commercial yogurts are high in sugar also, which would feed the yeast. I personally don't think yogurt alone would be enough to help a true overgrowth in yeast. I have read several times to get as much protein into the child as possible , but there are exceptions, where protein can cause problems with high ammonia levels. This gets pretty complicated, so I guess I would just say to carefully observe. I think as a general rule, most of us get excessive carbs, so balancing with fruits veggies and protein, would be wise in most cases, but again watch your particular childs reaction. This is some info. I ran across on the enzyme bd. Thought the relationship to the use of probiotics and tamping down a TH1 immune response was interesting. May be helpful info for anyone dealing with inflammatory bowel disease and other autoimmune issues. http://www.medscape.com/medline/abstract/15479680 Gut. 2004; 53(11):1602-9 (ISSN: 0017-5749) Hart AL; Lammers K; Brigidi P; Vitali B; Rizzello F; Gionchetti P; Campieri M; Kamm MA; Knight SC; Stagg AJ Antigen Presentation Research Group, Faculty of Medicine Imperial College London, Northwick Park Campus, Watford Road, Harrow, Middlesex HA1 3UJ, UK. Modulation of human dendritic cell phenotype and function by probiotic bacteria. This is a link from the product that they are talking about in the study. http://www.vsl3.com/VSL3/healthcare.asp

Errrrrrrr.....From the statement below, where are the safety studies on kids with an existing neuro conditions??????? Where are the safety studies on aluminum????? there aren't any. Where's the tipping point? They failed to add up the cummulative effect where thimerosal was concerned, but we are just supposed to trust that these experiments with our kids can continue indefinitely, and when bad consequences occur, they will just say it was a coincidence and had nothing to do with all of this bull*****. Sorry, as you can tell, I have a bit of negative passion on this subject. I'm really tired of TS/tic syndromes NOT being included in conditions like what's listed in the in the second bolded statement! It's like it's an invisable disorder, when these things are discussed. Why is that? An unprecedented amount of protection has beenn passed to protect pharma companies from law suits assoc. with vaccine damage. So all is clear now. Let the profits roll. Excerpt Equally concerning is the lack of scientific evidence supporting the safety of giving children entering puberty multiple vaccines, such as Tdap, meningococcal, HPV and chicken pox vaccine and others without long term studies evaluating the impact of pre-adolescent vaccination on brain and immune function. Today, the CDC recommends that, by age 11, children should have received 53-56 doses of 15 or 16 vaccines depending upon if the child is a boy or girl. Where are the safety studies that demonstrate this much vaccination leads to greater long term good health? and America's highly vaccinated children are in the midst of a chronic disease and disability epidemic, with millions of them suffering with learning disabilities, ADHD, autism, asthma, diabetes, inflammatory bowel disorder, severe food allergies and other kinds of brain and immune dysfunction that affected far fewer children in the past when far fewer vaccines were given to them. The last thing our sick children need now is one more vaccine. August 29, 2007 National Vaccine Information Center A young boy on the beach was throwing the washed-up starfish back into the ocean. A stranger passing by told him not to bother, because it would not make any difference, there were thousands of beaches and millions of starfish, and it would not be possible to save all of them. The boy reached down, picked up a starfish, threw it back into the ocean and said, smiling softly, " I made a difference for that one!" NVIC E-news "While there are a few exceptions, students who begin school without this [Tdap] vaccination will have two weeks from September 1 to get it or, legally, the schools will be obligated to exclude them from attending school, according to Claire Pospisil, spokesperson for the New York State Department of Health.....The reason for the new vaccine is simple: to protect the health of children and adults, Pospisil said. "We have had a widespread outbreak of pertussis or whooping cough in New York State throughout the previous year, 2006, and because of this, there will be a protective benefit against whooping cough if people are vaccinated," she explained....."The drug manufacturers have just approved a pertussis [vaccine] for adults," she noted....But according to Dr. Lawrence Palevsky, a holistic pediatrician at the Northport Wellness Center, the new immunization requirement, especially for pertussis, may be a bit premature...."I don't think true due diligence has been done to evaluate the potential neurological complications in children above seven years old who are given this vaccine"....According to Dr. Alan Sherr, chiropractor and director at the Northport Wellness Center, individuals who have not received any vaccinations may have a natural immunity to a particular virus. However, the case may be different for those who already have participated in routine vaccinations since infancy." - Michelle Gabrielle Centamore, Suffolk Life (August 22, 2007) "A reported boom in U.S. whooping cough cases is now being questioned after health officials discovered a regularly used lab test misdiagnosed cases in suspected outbreaks in New Hampshire, Massachusetts and Tennessee. The false test results led thousands of people to take antibiotics unnecessarily and even caused a New Hampshire hospital to limit the number of patients admitted since hospital workers were thought to be infected....Government health officials say cases have tripled in the United States since 2001, with nearly 26,000 cases reported in 2005. Nearly half of those cases were diagnosed with the testing method now called into question, and that has raised doubts about the true number of cases......"It's been a roller coaster. Whoa, look at this big outbreak! Whoa, it wasn't really pertussis!" said Dr. William Schaffner, chairman of Vanderbilt University's department of preventive medicine." - Mike Stobbe, Associated Press (August 23, 2007) Barbara Loe Fisher Commentary: When public health authorities choose to scare us by hyping the dangers of infectious disease, like whooping cough (pertussis), the least we can expect is that they have gotten their scientific facts straight. The Keystone Cops act is not very reassuring: "Whoa, look at this big outbreak! Whoa, it wasn't really pertussis!". For the last several years, public health officials have been beating the drums, warning us that whooping cough is on the rise despite a more than 95 percent uptake of pertussis (whooping cough) vaccine by all children entering kindergarten, who are required by most states to have 3-5 doses of DTaP (diphtheria- tetanus-acellular pertussis) vaccine before they can attend school. The CDC's solution has been to recommend yet another dose of pertussis vaccine via a booster Tdap shot for all 11-12 year old children. New York and other state health officials are in the process of persuading politicians to add Tdap to state mandatory vaccination laws. That "more is better" solution, say federal health officials, will finally stamp out whooping cough. But now, we find out that many of the whooping cough cases reported in the "outbreaks" around the country, such as in New Hampshire, Massachusetts and Tennessee, were bogus cases because some "speedy" lab tests to confirm whooping cough give a false positive the majority of the time. So the reported tripling of whooping cough cases in the past five years may be a total fabrication and the push for children to get another booster dose of Tdap at 11-12 years old may not make any difference at all. There are other infectious organisms, such as parapertussis, which cause respiratory disease that can mimic whooping cough and they are not covered in the Tdap vaccine. Lab diagnosis is critical to accurately confirming and treating whooping cough and it is unfortunate that it has taken so long to uncover the ineffectiveness of the lab test used to confirm many suspected whooping cough cases today. But more importantly, the rush by federal health officials to add yet another booster dose of vaccine without carefully investigating why whooping cough is apparently occurring in a highly vaccinated child population does not inspire confidence in the evidence with which the CDC supports vaccine recommendations. Assumptions are a poor replacement for scientific evidence. Equally concerning is the lack of scientific evidence supporting the safety of giving children entering puberty multiple vaccines, such as Tdap, meningococcal, HPV and chicken pox vaccine and others without long term studies evaluating the impact of pre-adolescent vaccination on brain and immune function. Today, the CDC recommends that, by age 11, children should have received 53-56 doses of 15 or 16 vaccines depending upon if the child is a boy or girl. Where are the safety studies that demonstrate this much vaccination leads to greater long term good health? America's highly vaccinated children are in the midst of a chronic disease and disability epidemic, with millions of them suffering with learning disabilities, ADHD, autism, asthma, diabetes, inflammatory bowel disorder, severe food allergies and other kinds of brain and immune dysfunction that affected far fewer children in the past when far fewer vaccines were given to them. The last thing our sick children need now is one more vaccine. -------------------------------------------------------------------------------- Motives Behind Vaccine Requirements Questioned Suffolk Life August 22, 2007 by Michelle Gabrielle Centamore Click here for the URL: The New York State Department of Health has announced a change in the immunization requirements for school entry. Students who are entering sixth grade on or after September 1, 2007 and who are 11 years of age or older are now required to receive a combination vaccination called Tdap, related to diphtheria, tetanus and acellular pertussis, or whooping cough. While there are a few exceptions, students who begin school without this vaccination will have two weeks from September 1 to get it or, legally, the schools will be obligated to exclude them from attending school, according to Claire Pospisil, spokesperson for the New York State Department of Health. In addition, Pospisil said, "we anticipate that there will be a new requirement regarding a booster dose for varicella - chicken pox - in the near future." Although notice of the new immunization requirements was announced in spring 2007, time is running out for those students who have not updated their immunizations to meet the new requirements by the state. Prior to the new requirement, Pospisil said, "students would have received a 'booster' with tetanus and diphtheria, which has been recommended every 10 years - most sixth-graders would have originally received their first diphtheria, tetanus and pertussis vaccine in infancy - so the pertussis bundled in with the other two is an opportunity for them to get immunity for all of them at the same time." Students who have received a Td, DT, or DTaP vaccination within the past two years, may defer their Tdap for another two years, said Pospisil. Students who are 10 years old and are entering sixth grade may also wait until they turn 11 before they receive the vaccination, Pospisil said, but they will be expected to follow through with the vaccinations once they turn 11. Regarding children entering grades above sixth, Pospisil added, "We recommend an eighth-grader, for example, who has not had a booster in two years, consult with their healthcare provider regarding the Tdap." The reason for the new vaccine is simple: to protect the health of children and adults, Pospisil said. "We have had a widespread outbreak of pertussis or whooping cough in New York State throughout the previous year, 2006, and because of this, there will be a protective benefit against whooping cough if people are vaccinated," she explained. Until recently, she added, a vaccine for pertussis was only available for children, not adults. "The drug manufacturers have just approved a pertussis [vaccine] for adults," she noted. "One is good for [those] ages 11 to 65, called Adacel, and the other, for children ages 10 to 18, [is] called Boostrix." "In infancy, children receive DTP - diphtheria, tetanus and pertussis - but the pertussis only lasts about seven years and then that child, as well as all adults, would not be protected against pertussis or whooping cough," explained Donna McPartlan, a school nurse at Elwood Middle School. Requiring 11-year-olds to receive this vaccine, said McPartlan, assures a greater protection for not just children, but adults and infants, as well. "How many adults go for shots?" McPartlan said. "Nobody. How am I going to immunize my brand new mothers bringing home infant babies? I don't see them before they are pregnant. So wouldn't it be great if I could immunize them while they are in school so it would last," she said, adding that all of her students and their families have been reminded several times since the initial announcement by the state DOH. "We support anything that is going to provide good health for children," stated Adrienne Robb-Fund, assistant superintendent for elementary education in Commack. "If the department of health thinks this is important, we support it." Moreover, Robb-Fund noted that, like most schools, Commack sent notification of the new immunization requirements to students and their families back in spring. "We haven't mandated it ... it's the law, and technically, after 14 days, we are supposed to not have the child in school, and that is what we want to avoid," she said. But according to Dr. Lawrence Palevsky, a holistic pediatrician at the Northport Wellness Center, the new immunization requirement, especially for pertussis, may be a bit premature. While Pospisil said that a pertussis vaccine was not given to older children (versus infants) because there was not one available for them, Palevsky said it is more a matter of health and safety. Regarding the DPT, Palevsky said, "Every single study that has been done in the past on the DPT has clearly shown that it is not safe to give it to children above the age of seven because of neurological complications. But now all of a sudden what they are saying is that the new studies show that there is no worry about neurological complications for children above seven years old. It is a huge leap to go from 'there may be severe neurological complications if children above the age of seven are getting the vaccine' to 'it's now safe to give it to children at 11 years old.' I don't think true due diligence has been done to evaluate the potential neurological complications in children above seven years old who are given this vaccine." There is not enough evidence to support the safety of the new vaccine or effectiveness in reducing the incidence of pertussis, according to Palevsky. "We need to explore how an outbreak of an illness really occurs, to understand why vaccination may not reduce the incidence of an infectious illness like pertussis," he said. According to Dr. Alan Sherr, chiropractor and director at the Northport Wellness Center, individuals who have not received any vaccinations may have a natural immunity to a particular virus. However, the case may be different for those who already have participated in routine vaccinations since infancy. "There is a dilemma in the argument when you are looking at a population that has already received all of their vaccines to this point and do not carry any natural immunity on their own," Sherr said. This dilemma, he said, may raise the question: "Is it then appropriate to vaccinate that population because they are already immune deficient? Should we? Maybe .... Those children never had the opportunity of getting these conditions on their own; by receiving them artificially, they don't have them naturally." "The medical community believes that having the illness is bad for the child. I don't believe it is," said Palevsky. "In reality, experiencing the natural illness has immune-boosting effects on the body." And as for the viruses in the required vaccines, if contracted, Palevsky said, "most people can make a full recovery." But what about a second chicken pox vaccine, which according to Pospisil, may be the next new immunization requirement imposed by the DOH on middle-school-aged children? According to McPartlan, an 11-year-old child who gets the chicken pox may experience discomfort, a fever, itchiness and scarring. This child, she said, will be excluded from school or day care. It also impacts the child's mother or father economically and socially, she added, and could even pose a greater health risk on other individuals, a pregnant aunt, for example. "The virus could cause problems to the fetus .... if you spread it to someone who is immuno-compromised, it can cause death," she said. But Palevsky argues that the main reason for giving children the varicella vaccine is purely economic. "It is to keep parents from having to miss work by having to stay home for a week when their kids get the chicken pox and stay out of school," he said. "It is more of an economical reason to give the vaccine versus, 'a child has a great likelihood of suffering a bad outcome from getting the chicken pox.'" The new Tdap vaccine requirement has left some parents and caregivers feeling more confident that their children will be further protected against disease, and others feeling frustrated, questioning the intent of the DOH, as well as the effectiveness and safety of the vaccine. Jackie Carbone, a Centereach resident and an educator at a preschool in Sayville, said that she is in full support of the new vaccine, as well as others required by the DOH. "I think that it helps to protect children and their immune systems against diseases that we could previously not protect against, diseases that, if contracted, are debilitating or possibly life- threatening." Deer Park resident Alayna Becker recently took her 13- year-old daughter to be immunized with the Tdap. "I'm sure there is a good reason to have it - protecting her health and that of others - that is why I got it for her," she said. But still, Becker questions the vaccine's effectiveness, since it still is new. "They could change it along the way because, like other new drugs, they may find it is not accurate," Becker added. "I am always leery when there are new requirements for vaccinations." "I am very concerned about another vaccine for our kids," said Irene Schmidt, a Huntington resident and mother of two children, ages three and five. "How many more vaccines will be required when my children enter sixth grade? I fear both the accumulating effects of additives like mercury and also the unnatural influence that more vaccines will have on our children's immune systems." As a parent to a child on the autism spectrum, added Schmidt, "I feel that the rise in the rate of autism needs to be definitively explained before any new vaccines are mandated for our kids." According to the state DOH, by grade 12, students are required to receive one to four doses of up to 10 different vaccines. Pospisil noted that, as with any of the vaccines, exemptions for Tdap are made for those who have proof of antibodies for the virus, valid religious justifications or valid medical reasons explained by a child's physician. For more information on the current state immunization requirements, visit www.health.state. ny.us CDC: Whooping cough cases misdiagnosed Associated Press August 23, 2007 By Mike Stobbe Click here for the URL: A reported boom in U.S. whooping cough cases is now being questioned after health officials discovered a regularly used lab test misdiagnosed cases in suspected outbreaks in New Hampshire, Massachusetts and Tennessee. The false test results led thousands of people to take antibiotics unnecessarily and even caused a New Hampshire hospital to limit the number of patients admitted since hospital workers were thought to be infected. The testing errors were reported Thursday by researchers with the Centers for Disease Control and Prevention. Pertussis, or whooping cough, is a potentially fatal bacterial respiratory infection. Its name comes from the sound victims make as they try to recover their breath after a coughing fit. Government health officials say cases have tripled in the United States since 2001, with nearly 26,000 cases reported in 2005. Nearly half of those cases were diagnosed with the testing method now called into question, and that has raised doubts about the true number of cases. "Are we in fact seeing an increase?" asked Dr. Tom Clark, summarizing what some are wondering. Clark, a CDC epidemiologist, is co-author of the report on the misdiagnoses. The most accurate diagnostic testing for whooping cough requires a week or more to grow the pertussis bacteria from a sample from a patient's nose or throat. Sometimes that's too long for health authorities to take action to prevent the disease from spreading. Increasingly, doctors have depended on a faster, but less accurate test. Different labs do the tests differently, leading to uneven results, experts say. Last October, the less accurate method was used to diagnose a 20-month-old child with whooping cough at Children's Hospital Boston. Three dozen specimens from hospital workers also tested positive as well. But those results were wrong, according to the more reliable bacteria culture test results, the CDC reported. The same situation occurred in March 2006, when a lab worker at Dartmouth-Hitchcock Medical Center in Lebanon, N.H., was diagnosed with the illness. Nearly 1,000 hospital workers were tested, treated and furloughed to prevent infecting patients. Thousands were given antibiotics and vaccinations. The precautions affected staffing levels, and the hospital had to close off some beds. About 100 employees were diagnosed with pertussis using the speedy test, results later found to be wrong. In April 2004, a 5-week-old infant in one Tennessee community, which CDC wouldn't identify, was diagnosed with whooping cough. Health officials began looking for the illness in other residents. Ultimately nearly 1,500 people were checked or offered antibiotics; 43 tested positive at first. But the more reliable test turned up negative results for all except the baby, the CDC said. "It's been a roller coaster. Whoa, looks at this big outbreak! Whoa, it wasn't really pertussis!" said Dr. William Schaffner, chairman of Vanderbilt University's department of preventive medicine. It's not clear why so many errors were detected in each incident, Clark said. Contamination of samples does not appear to be the explanation, he added. The CDC is planning a study to improve and standardize the method of faster testing. In the meantime, people should still get recommended pertussis vaccinations, Clark said. Clark said he believes there is a real increase in cases, and that many are going undiagnosed. Two states, Minnesota and Massachusetts, have beefed up their case-finding and testing and have both seen whooping cough increases, he said. On the Net: The CDC's Morbidity and Mortality Weekly Report: http://www.cdc.gov/m mwr National Vaccine Information Center -------------------------------------------------------------------------------- email: news@nvic.org voice: 703-938-dpt3 web: http://www.nvic.org NVIC E-News is a free service of the National Vaccine Information Center and is supported through membership donations. NVIC is funded through the financial support of its members and does not receive any government subsidies. Barbara Loe Fisher, President and Co- founder. Learn more about vaccines, diseases and how to protect your informed consent rights at www.nvic.org

Faith, I never had the pyroluria testing done, mostly because I knew the boys were low zinc from blood test done through their reg. Ped. I have used 25 mgs. of zinc picolinate for youngest son pretty consistently. I recently got 50 mgs because they were out of my reg 25 mg. I am hesitant to use the 50's long term though. I only give that every other or every 3rd nite. They also get B6 and zinc in Bonnie's vits, so I have to take that into consideration too. I'm lucky to get 10 a day, into youngest son, and that provides an extra 10 mgs of zinc.

Becky, I'm just wondering how you are doing and if you were able to locate a Dr? I can imagine you are! You might want to try an epsom salt soak for yourself, they really can be soothing. I am also taking quite a few supplements myself now. I'm so glad you found this site. A big welcome!!!!!!!! Kim

That was beautiful CP. Thank you so much for being here!

tlk, My oldest son seemed to repond to Mortin and benedryl with decreased head shaking tic. I wonder if the antinflammatory properties of motrin helped, or just pain relief. I am not a fan of motrin at all, or long term use of benedryl, but they did seem to help.

Mary, I'm sorry that it has taken me so long to respond. Sometimes, I have to physically move the computer so I stay off for a while. By the time I'm done reading the new posts, somedays, my mind is so full of things that I want to respond to, that I just get overwhelmed and have to shut down. I physically feel the pain and frustration of every single person going through this ordeal. Anyway, I did try really hard to keep my son off of cow's milk, but he started to lose weight. He hated rice and soy milk (extremely taste sensitive and suspicious of every different food). The only thing I can get into him before school, is a Carnation Instant breakfast drink. I decided to ditch the milk avoidance (also I felt this was one of his only sources of methionine and sulfur) and start using digestive enzymes instead. We did avoid peanut butter for about 2 mos. You have no idea how hard food restrictions are, unless you have one of these kids who literally exists on 4 to 5 foods. Milk and peanut butter are two of the only foods that can even remotely be associated with any nutritional value that he eats. Other things like pretzels, crackers, french fries, just don't provide much, although I do wonder if he needs the salty things for iodine (thyroid). One of the biggest improvements that we saw with the use of enzymes was the frequent stomach aches stopped. This was an improvement that was really a "wow," however, he did not start adding new foods, which was my biggest hope. A while back, another parent shared with me, that maybe I was focusing on a particular food too much, when the main issue with many of these kids is the overall condition of the gut. If there is damage to the mucosal lining, or leaky gut, caused by yeast overgrowth or gut flora issues (overgrowth of "bad" bacteria in relationship to benefical bacteria) you may lose one sensitivity and just develope another. This made sense to me. So we started probiotics, continue to use Houston enzymes, and I am always on the lookout for new ideas for gut healing (there are MANY). It is an ongoing, hopefully healing, process here

Oh good greif, we love brown rice here. This article mentions the use of rice milk too. http://www.telegraph.co.uk/earth/main.jhtm...9/eababy129.xml 'Dangerous' levels of arsenic in 10pc of rice He said that brown rice, favoured by macro-biotic, healthfood fans, had even higher levels of arsenic. Bran from the United States used as a food supplement had levels approaching Britain's food standard of one part per million, set in 1959. "That is incredibly high," he added.

Michele, I'm sorry I didn't warn you to give Andrew lots of water before that kind of a mega draw. I wonder if his arm ached? My youngest son is pretty tough, and he said the aching in his arm was pretty bad after a 10 vial draw. Then, a parent here told me about drinking water prior to, helping, and I have read that several times since. Boy, your "pretzel" remark really hit home here! Sugar cravings too. Could you give me any specifics about his diet? Did his eating patterns change over time, or was his diet like this from the git go? Does he limit protein containing foods? There was a BIG thread on an autism bd, titled something like "what's up with McDonalds french fries" You should have seen how many people were posting about their child wanting those fries! About hubby, I think many (not all) men are "action" guys. They are not the thinkers or planners. This is true of my husband. One thing that really helps is to point out behaviors, if Andrew reacts negatively to something like a red slurpee, or a Sunday morning donut and chocolate milk. It even took me a while to see this. I was always watching for tic increase. I failed to notice that my guys behavior deteriorated. I guess I will just say "noncompliant." When you point that out, he may get onboard a little more quickly, again, if this is true in your son's case. Hang in there Michele, this all gets easier as you go. Prayers are with you and all of our members, old and new!

Sunshine, Too cool!!!! Now I know what they're talking about when they refer to problems with VDR's. I will wait until you post the general info, then maybe PM you with specific questions. I know exactly what you mean about confusing info. and a reluctance to post. Until Giselle posted her info. I hadn't read the thread I linked to "Pathway Diagrams explanation/ A mothers view." I had been searching threads relating to specific things like PANDAS and eating disorders/sugar cravings (still my nightmare with youngest). That helped clear up a lot of the genetic results! I havn't had much time to go back, and try to piece more together though. As Cheri said, it just makes my heart sinnnnnnng, to hear of your sweeties improvements!

Tom's Mom, I think you are confusing the IgG and IgE. Rast is IgE. Now I think you are saying that you would like IgG. I know how easy it is to get tripped up with all of these initials! You know, our traditional old Pediatrician actually did order a form of IgG testing for me. He had no idea that it existed. It was covered by our insurance too. It was ordered through Labcorp, who then sent it on to Mayo labs. It covered 20 foods. It was horrible to get ordered then done, and took me quite some time on the tele. to get them to order the correct test. Noone knew the coding for the tests and apparently each food like soy, milk, wheat, corn, etc. had it's own code # for IgG. Then the girls who did the draw in the lab, didn't know how much blood was needed or how to write up their end of things. When the test results came back, under milk they had IgE (the rest were right, with the IgG) and that was one that I HAD to know. Luckily, I called MAYO, had a mini fit, and the lab tech called me back and said they still had the speciman and they would run the IgG on milk. It was one of his highest reactive sbustances. The other was peanut, and he had a weird one, pork. Mild for egg, grains. Just a tip, that someone else here shared with me. If you decide to pursue this, DO NOT MENTION TS OR TIC SYNDROME. Tell the Dr. that your son is having stomach aches or constipation or typical allergy (stuffiness etc.) after eating certain foods. Insurance will not cover, if the test is ordered for a symptom like tics.

I didn't read the comments, but a few statements in the article itself made me just a bit furious. Like Faith, my boys are not autistic, have no add or adhd, tics are minimal. I am not a "desperate parent" (please noone take that wrong, that just seems to be a favorate phrase for these reporters when describing families using DAN methods of treatment). The article states Chelation therapy, Mulick said, is a potentially dangerous process that uses a compound that is supposed to remove heavy metals from children's tissues. Many parents believe mercury contained in routine vaccines is the cause of autism. A 5-year-old Pittsburgh boy with autism died in 2005 after undergoing chelation therapy, according to news accounts. yet it was later discovered Drug Error, Not Chelation Therapy, Killed Boy, Expert Says http://www.pannaturopathic.com/chelationautism.html and I guess this one death although so so tragic, caused by one of these "off the wall and dangerous alternative practioners" can not even come close to the track record of the "safer" mainstream med. world. Medical errors kill tens of thousands annually, panel says http://www.cnn.com/HEALTH/9911/29/medical.errors/index.html back box warnings....yes a good thing to be aware of indeed. Any and all info that we are made aware of the better! However, this artcle fails to mention Antidepressants prescribed to children will have Black Box labels warnings http://www.ahrp.org/infomail/04/10/15.php And other drugs that may be familar to some here, barely dodged the black box warning recommendation http://www.psychiatrictimes.com/Children-a...cleId=187202607 Nelson's committee was responding to the action of the FDA's Drug Safety and Risk Management (DSaRM) Advisory Committee, which had voted in February to recommend adding a black box warning on labels for stimulants used in the treatment of ADHD. I vote for biased and uninformed too! There are children who have been recovered using DAN methods!!!!!

Trent B, Don't give that another thought. These are the side effects of the drug that was prescribed for my oldest son when he was about 8 yrs old. More common Difficulty in speaking; dizziness or fainting; fast or irregular heartbeat; loss of balance control; lack of facial expression; mood or behavior changes; restlessness or need to keep moving; shuffling walk; slowed movements; stiffness of arms and legs; swelling or soreness of breasts (less common in males); trembling and shaking of fingers and hands; unusual secretion of milk (rare in males) This script was for Pimozide/orap. You know, the Dr. who said patients were dying from germs on sugical instruments was ridiculed. Not long ago, those who said amalgam or silver (mercury dental fillings) were dangerous "were nuts." At one time the world was thought to be flat............ Next time ask him what he thinks about the involvement of T reg cells in TS or cite other studies, and watch him squirm. http://ecam.oxfordjournals.org/cgi/content/full/3/2/209 Considerable inflammation, resulting from allergic hypersensitivity or immune response to infection, has the potential to induce deleterious effects on an individual's tissues and overall well-being. Recent evidence has served to elucidate the mechanism of action and substantiate the usage of a veritable array of traditional herbs, folk medicines and other compounds found in nature, which have been employed to attenuate inflammatory complications. Of interest to practitioners, researchers and patients of CAM modalities are those compounds that maintain powerful immunomodulatory capacity via direct or indirect action on Treg cells (Table 1). and Often, patients with allergic diseases have a deficient ability to suppress T cell responses to allergen by Treg cells (32,34). http://www.ncbi.nlm.nih.gov/sites/entrez?d...l=pubmed_docsum CONCLUSIONS: These data support our hypothesis that at least some TS patients may have a decreased capacity to inhibit autoreactive lymphocytes through a deficit in T reg cells. Interactions of host T cell immunity and microbial factors may also contribute to the pathogenesis of TS.

Michele, I know how confusing those tests can be. Without scrolling back up, it looks like he is testing thyroid (all the the TH3,4 etc) lipid (cholesterol and triglycerides) and this one, you might want to read about....Kryptopyrrole. I think you have mentioned that Andrew is small. This test can show zinc (can be related to "stunted" growth and it seems many kids with these types of disorders are low on zinc) and B6 deficiency. http://www.kryptopyrrole.com/ Heres a link on C diff http://www.cdiffsupport.com/aboutcdiff.html Just keep learning. It will all start to make sense. I know how hard school is when your dealing with all of this, but remember, there are many many children with issues and it's much easier when they are in the lower grades. Kids at that age are so accepting and I really don't think they notice (or dwell on) differences much at all. I only wish I would have been able to get started on the things you're doing when the boys were that young. Michele, you mentioned Andrew loves donuts. Does he crave sweets or have a limited diet?

Hi Tom's Mom & Pamela Kay, Tom's Mom, absolutely stay the course if you are seeing those kinds of results! Here are some articles that will help you understand the difference btwn IgE and IgG responses. I really like the last of these three. I think it's got some really good info. http://www.labtestsonline.org/understandin...lergy/test.html Allergy Testing Also known as: RAST test, Allergy screen Formal name: Allergen-specific IgE antibody test http://www.directlabs.com/ImmunoLabs.php#IgGFood IgG Delayed Food Allergy Assay The majority of adverse immune reactions to foods classified as Type II, III, or IV with delayed symptom onset, are mediated by IgG and are termed food sensitivities. It has been estimated that 90% of immune reactions to foods are non-IgE, or delayed symptom onset food allergies. A single blood test can identify food specific IgG antibodies and thus identify patients’ food sensitivities. Recommended treatment for food sensitivities is elimination of reactive foods from the diet for a period of 3 to 4 months followed by reintroduction and rotation. There are 115 foods tested in the Standard Panel Immuno 1 Bloodprint™. http://www.gdx.net/home/assessments/allerg...uide/index.html

Michele, I was wondering if you have decided to go ahead with testing? I was following a thread this morning on another forum about the genetics and what part it plays in ASD's (autism spectrum disorders) and it made me think about your post and the Dr. ordering the anti-mylin basic protein antibodies test. If/when you do have testing, I hope you will post results. This article talks about this a bit http://www.healing-arts.org/children/vacci...to-immunity.htm I hope Andrew is doing well.

Trent, Since the original "seizures" and the suspected tics are so similar, has anyone discussed discontinuing Keppra, to see what level of activity you see, without the med? I would be encouraged that you haven't seen any new or different movements since this started. Hopefully, your son will just outgrow it. I breifly looked up Keppra. The most I got out of it, was that they really don't know how it works, (like many drugs). Since you mention sinus infection, and a ruptured ear drum, have you tied the "breakthorough" symptoms to bacterial infections? Has your son been cultured for strep during these infections? I do believe that tic activity can be related to infection for quite sometime after an infection (i.e. he had the infection, then the spells started 3 weeks later). Hard to tie thiat type of thing together unless you're looking for it! It's wonderful that you are investigating all of this on your own. Your little guy is young, and it's nice that you are educating yourself about all of the options. If you think he may have some ADHD tendencies, you might want to try some diet changes, supplements (careful to clear with someone who knows about both vits/minerals and Keppra, if he's still taking it). You may find while treating those symptoms, you eradicate the movements

Sunshine, What a pleasure to read your post. Please post as many details as possible when your done creating all of that Vit. D. I'm so glad you are seeing positive things with the Yasko proto. I have a copy of the genetics from a Mom who posted the results from her two TS/OCD kids. It would be nice to compare your results, Hoyt's, and these to see how close (or not) they come. I can't remember Dee (Dominique) saying whether or not, they did the genetic testing for her PANDAS son. Since they were seeing Dr. Mullan too, I would think they must have?