kim Posted September 4, 2014 Report Share Posted September 4, 2014 (edited) airial95, Such great points. I was never well versed in the MMR/Wakefield thing, although I did follow it somewhat for a period of time. My understanding was that the retracted study itself said that they didn't prove an association and further research was needed, so I'm not understanding the headlines about the "whistleblower," proving Wakefield right (which reinforces your insights as to gleaning anything meaningful from headlines). I'm guessing that the timing of the MMR to a subset of children is what they are referring to. Also, Wakefield denies that he ever had any interest in vaccine developement. The patient was in regards to transfer factor. You can read a couple of statements here http://issuu.com/wakefieldjusticefund/docs/1_3_12__plt_original_petition# page 144....about the retraction and what the claim of the study was in the first place page 146.....about funds from the patent On a different note, http://www.cctv-america.com/2014/09/01/hundreds-of-colombian-girls-been-hospitalized-after-vaccination excerpts A mystery illness has rocked a remote town in Colombia. More than 200 girls have been hospitalized after receiving shots of a vaccine to prevent cervical cancer, called Gardasil. Colombian health officials and the Colombia’s President have denied accusations over the vaccine. CCTV America’s Michelle Begue reports. and President Santos said scientist’s have several theories to explain these reports, including mass hysteria. Edited September 4, 2014 by kim Link to comment Share on other sites More sharing options...
WorriedDADNMOM Posted September 8, 2014 Report Share Posted September 8, 2014 Ariel, 19 months is very young for Pandas Onset. At what age did your kiddo have the 15-18 month MMR???? Interesting article here. www.klaire.com/images/PANDAS.pdf And another venn diagram of the similarities of ASD and Pandas..... http://www.ageofautism.com/2011/11/autism-and-pandas-.html Link to comment Share on other sites More sharing options...
airial95 Posted September 9, 2014 Report Share Posted September 9, 2014 His onset was within days of a positive strep infection - no correlation to the vaccines. His MMR was at 15 months. We put together a very detailed timeline of his onset, vaccinations everything because Dr. Murphy at the Rothman Center published a case study on him as the youngest documented case at the time. So she looked deeply into any - and all - other potential causes. His onset was within 24 hours of finishing a 10 day course of antibiotics for a strep infection. He is textbook. We continued to vax after onset - and even after diagnosis - although on a one at a time basis. He has never had a reaction to vaccines. I will say - I haven't looked at your link yet - but his onset DID look identical to autism. Had we had another doctor - I'm certain he would've been "labeled" and that would be that. What struck our doctor as odd in his presentation was the verbal regression - he was very advanced for his age - well over 50 words at his 15 month appointment and speaking in full, grammatically correct sentences by his 18 month check up. Within a few weeks of the strep infection - he lost almost all verbal ability. Had the regression been less drastic - if he had been on par with his peers verbally and then regressed - autism would've fit. But as our doctor summarized for us - you just don't go from being developmentally AHEAD of the curve to autistic over night - something else was up. He dx us at that point (took us 6 months to seek help beyond thinking it was the "terrible twos") and we started keeping detailed logs that pointed a clear connection to strep and his symptoms - also pointed out to us that our son was asymptomatic to strep and the initial infection at onset was the only time he ever showed tangible physical symptoms. I will also add as it relates to my son - his onset was sudden. Abruptly sudden. I can pinpoint it to the exact day and time - which isn't often heard of in lots of folks who suspect PANDAS in their younger ones. He was a classic textbook as it comes - with the exception of age of onset. Which thanks in part to Dr. Murphy's case study on my son, is no longer a major diagnostic criteria. Link to comment Share on other sites More sharing options...
kim Posted September 10, 2014 Report Share Posted September 10, 2014 (edited) I was going to leave this at the bottom of this post, but I think I'll put it here Key Step Toward a Safer Strep Vaccine http://www.rtmagazine.com/2014/06/key-step-toward-safer-strep-vaccine/ If you click on the link within the article "The findings." you will be where they are trying to knock out GlcNAc from the strep bacteria. They call it a unique polysaccharide. airial, I'm just thinking out loud here. Young children are supposed to be able to mount an immune response to polysaccharides, but not form "memory," to them. I have read different things in different places. Most say at 2 yrs. this changes. I have read in the 3-5 year range too (i think). That's why a conjugated vaccine is recommened for younger children. They attach a protein to the polysaccride(s) and absorb it on alum. to get a response that the body just normally wouldn't produce. I'm talking about the vaccines for something like the Pneumococcal illness here, not MMR, varicella or live viral vaccines.The vaccine for adults is a polysaccharide only, Prevnar is conjugated. So your son would have had an immune response that created an antibody with memory to strep (I'm presuming here) at what would have been thought to be on the low end of the age range. One of the concerns regarding vaccines is that childrens immune systems are shifting from how they were naturally programmed. I'm going to go back and read here. http://www.beyondconformity.org.nz/hilarys-desk/vaccines-and-neonatal-immune-development I hope everyone on this forum will read this (all 3 pages +part 4.) Not to prove anything, just some things to think about, even in regards to naturally occruing illness. She explains this stuff way better than I can. I have read it several times and get something new out of it every time. edit cause I can't spell polysaccharide Edited September 10, 2014 by kim Link to comment Share on other sites More sharing options...
airial95 Posted September 10, 2014 Report Share Posted September 10, 2014 I appreciate the additional info, but in my son's case there is absolutely no connection to his onset and vaccines. Furthermore, we have a genetic history of the HLA B27 genetic mutation, which makes our family predisposed to autoimmune and inflammatory conditions genetically, I had chronic strep as a child and our family also has a family history of Rhuematic Fever and strep complications. Two different PANDAS experts have said unequivocally that I had it as a child, and one look at my medical history would leave no one in doubt - my chart reads like a textbook for PANDAS until I was in my early 20's (which is when they theorize that "classic" PANDAS kids may "outgrow" the immune response). To date, there has been no research connecting HLA B27 to PANDAS directly, but there has been research linking it to chronic strep and RF. So while I appreciate all of the additional information. My child was not vaccine injured in any way shape or form, the only way to even make that leap is to ignore all other aspects of his medical history except the age of onset and the fact that he is vaccinated. My daughter didn't have her onset until she was 5 years old, well over a year after her last vaccination. In our family's case there is no correlation. I know that is not the case for everyone, and some have clear connections to their onset related to a vaccine. We do not. We just have the wonderful genetic jackpot that makes my kids prone to strep, and opens the door for this disease. I will add that his strep infection was not strep throat - which is uncommon in children under 2, but impetigo (which can also be caused by staph, but in this case it was strep), which is very common in children under 2 - especially in a daycare setting. Link to comment Share on other sites More sharing options...
kim Posted September 10, 2014 Report Share Posted September 10, 2014 (edited) Airial, Do you consider the genetic history of the HLA B27 genetic mutation, which makes your family predisposed to autoimmune and inflammatory conditions genetically, when making vaccine decisions? If so, I would think that the information in the link provided above would be of interest to you, mostly because of the information regarding inflammation and how an infants body is programmed to avoid it during the first year or two. I understand that you have a very clear cut classical PANDAS picture and that you don't believe that vaccines played any part in that condition. However, you are in the same boat as many parents (and maybe ahead of the game because you do know of a genetic family history) that are trying to learn which vaccines may be beneficial or harmful and by what mechanism. Do you have any feeling regarding an adjuvanted vaccine or a live viral vaccine? It seems I have read an occasional remark by a parent that says that their childs Dr. treating PANDAS say "no viral vaccines," but I don't think I have ever heard anything about avoiding aluminum, so I'm curious. I know that there are kids with tics, ocd, autism etc. that have never gotten a vaccine. I don't think anyone wishes to make any leaps and ignore any aspect of a condition. Quite the contrary. Connecting dots, keeping dialouge open and learning from one another is what I think we are all doing here and I appreciate your responses! I Edited September 10, 2014 by kim Link to comment Share on other sites More sharing options...
airial95 Posted September 24, 2014 Report Share Posted September 24, 2014 My kids can't have the live viral vaccines because my treatment for AS is immune suppressive, and live vaccines are not recommended for anyone in the household of someone on my meds. So it has nothing to do with their PANDAS, or if they are HLA B27+, but more to do with my treatment. We didn't know about my status until about the time my son was diagnosed - so I honestly can say it wasn't a factor in any of our decisions up to that point. Had we known sooner would it have been a factor? I doubt it, but can't say for sure, it may have affected what additional research we looked at. We did not make the decision to vaccinate our kids lightly - we thoroughly researched the best available data at the time (actual published papers - not summaries or blog posts as I mentioned), and did our own risk/benefit analysis of what was right for our family. And frankly, that's what every new parent should do for their children. I know you probably didn't mean to come across this way, but when you say you know I "don't believe that vaccines played any part in that condition" it sounds very disrespectful and dismissive. You are right, I don't believe it played any part - I KNOW it. Why? Because it's very well documented. We know the exact date (May 19, 2009) and time (2:15 - upon waking from nap at day care) of his onset. We have the incident reports from that day, and every subsequent day after that documenting the increase in symptoms - which at the time we thought were just "terrible twos". We have the emails to the pediatrician asking for information on developmentally appropriate behavior (weekly emails, starting May 22, 2009) and advice. And more importantly, we have the medical records, which show that he was in the pediatrician for an impetigo infection on May 8th, and finished a 10 day course of oral (and topical) abx the morning of May 17th. His last round of vaccinations happened March 17, 2009. We are one of the rare few that have such a detailed history of our son's early onset - most were diagnosed at 4, 5 or 6 and then in retrospect believe it started younger. Because of our (accidentally) meticulous record keeping of both the day care records and correspondence with our pediatrician, his records, and our own data collection prior to diagnosis (attempting to identify patterns and causes of his behavioral outbursts - which we continued after diagnosis), a very clear presentation of his onset -and the causes of it were easy to identify. When Dr. Murphy did her case study, she even took it one step further than we did with a comprehensive review of his medical records going all the way back through my pregnancy records, and even looked at my daughter's records for comparison (she had not had her onset at the time). By saying I don't "believe" vaccines had anything to do with it, it implies that I am just not willing to acknowledge that it is the case, which I'm sure you didn't mean. But it forces me to defend my son, and our parenting decisions - which is counter productive to what we are all trying to do here - which is support each other and share our stories. I do believe that there are kids who are triggered by vaccines - I've said it before. It is just not the case for us. I've read all the links you have posted, and while they are interesting, they don't change our son's medical history. Link to comment Share on other sites More sharing options...
amysash Posted September 30, 2014 Report Share Posted September 30, 2014 Here is a list of medical articles that you can site: Serological association of measles virus and human herpesvirus-6 with brain autoantibodies in autismhttp://www.ncbi.nlm.nih.gov/pubmed/9756729 Abnormal measles-mumps-rubella antibodies and CNS autoimmunity in children with autismhttp://www.ncbi.nlm.nih.gov/pubmed/12145534 Neurodevelopmental disorders following thimerosal-containing childhood immunizations: a follow-up analysishttp://www.ncbi.nlm.nih.gov/pubmed/15764492 Persistent behavioral impairments and alterations of brain dopamine system after early postnatal administration of thimerosal in ratshttp://www.ncbi.nlm.nih.gov/pubmed/21549155 Maternal thimerosal exposure results in aberrant cerebellar oxidative stress, thyroid hormone metabolism, and motor behavior in rat pups; sex- and strain-dependent effectshttp://www.ncbi.nlm.nih.gov/pubmed/22015705 Administration of thimerosal to infant rats increases overflow of glutamate and aspartate in the prefrontal cortex: protective role of dehydroepiandrosterone sulfatehttp://www.ncbi.nlm.nih.gov/pmc/articles/PMC3264864/?tool=pubmed Neurological Complications of Pertussis Immunizationhttp://www.ncbi.nlm.nih.gov/pmc/articles/PMC2025848/?page=1 DPT Vaccine and Chronic Nervous System Dysfunction: A New Analysishttp://www.nap.edu/catalog.php?record_id=9814#toc Pertussis toxin is required for pertussis vaccine encephalopathyhttp://www.ncbi.nlm.nih.gov/pmc/articles/PMC391511/pdf/pnas00364-0469.pdf Hepatitis B triple series vaccine and developmental disability in US children aged 1-9 yearshttp://www.tandfonline.com/doi/abs/10.1080/02772240701806501 CNS demyelination and quadrivalent HPV vaccinationhttp://msj.sagepub.com/content/15/1/116.short Increased Incidence and Clinical Picture of Childhood Narcolepsy following the 2009 H1N1 Pandemic Vaccination Campaign in Finlandhttp://www.plosone.org/article/info%3Adoi%2F10.1371%2Fjournal.pone.0033723 Safety and immunogenicity of H5N1 vaccinehttp://www.thelancet.com/journals/lancet/article/PIIS0140-6736(06)69891-7/fulltext Child influenza vaccination: Ramifications of adverse events in children in Australiahttp://www.bmj.com/content/340/bmj.c2994 Progression of Renal Disease in Henoch-Schönlein Purpura After Influenza Vaccination(Click PDF in upper right corner for full text)http://jama.jamanetwork.com/article.aspx?articleid=367705 Henoch–Schönlein purpura following meningitis C vaccinationhttp://rheumatology.oxfordjournals.org/content/40/3/345.full Fatal outcome after postexposure rabies vaccination in a patient with Parkinson’s diseasehttp://www.ncbi.nlm.nih.gov/pubmed/15675624 Acute disseminated encephalomyelitishttp://www.neurology.org/content/68/16_suppl_2/S23.abstract . Acute disseminated encephalomyelitis following influenza vaccinationFull text available by clicking PDF in upper right cornerhttp://archneur.jamanetwork.com/article.aspx?volume=37&issue=9&page=564 . A Case Series of Children with Apparent Mercury Toxic Encephalopathies Manifesting with Clinical Symptoms of Regressive Autistic Disordershttp://www.ncbi.nlm.nih.gov/pubmed/17454560 Vaccination against Whooping-Cough: Efficacy versus Riskshttp://www.sciencedirect.com/science/article/pii/S0140673677910285 DPT Vaccine and Chronic Nervous System Dysfunction: A New Analysishttp://www.nap.edu/catalog.php?record_id=9814#toc Acute disseminated encephalomyelitishttp://pmj.bmj.com/content/79/927/11.full Acute necrotizing encephalopathy secondary to diphtheria, tetanus toxoid and whole-cell pertussis vaccination: diffusion-weighted imaging and proton MR spectroscopy findingshttp://www.springerlink.com/content/44xt417387hx4877/ The smallpox vaccine and postvaccinal encephalitishttp://www.ncbi.nlm.nih.gov/pubmed/12170398 Encephalo-Myelitis following Vaccinationhttp://www.ncbi.nlm.nih.gov/pmc/articles/PMC2047920/ Encephalo-Myelitis following Vaccinationhttp://actx.beta.download.thelancet.com/journals/lancet/article/PIIS0140-6736(01)28386-X/fulltext Subacute sclerosing panencephalitis–the continuing threatDeaths Attributable to Smallpox Vaccination, 1959 to 1966, and 1968Click PDF in upper right corner for full text.http://jama.jamanetwork.com/article.aspx?volume=212&issue=3&page=441 Acute encephalopathy and chronic neurological damage after pertussis vaccinehttp://www.ncbi.nlm.nih.gov/pubmed/7906066 Encephalopathies following prophylactic pertussis vaccinehttp://pediatrics.aappublications.org/content/1/4/437.abstract Treatment of lethal pertussis vaccine reaction with histamine H1 antagonistshttp://www.neurology.org/content/37/6/1068 Murine model for pertussis vaccine encephalopathy: linkage to H-2http://www.nature.com/nature/journal/v299/n5885/abs/299738a0.html Thimerosal-Derived Ethylmercury Is a Mitochondrial Toxin in Human Astrocytes: Possible Role of Fenton Chemistry in the Oxidation and Breakage of mtDNAhttp://www.ncbi.nlm.nih.gov/pmc/articles/PMC3395253/ ‘ASIA’ – autoimmune/inflammatory syndrome induced by adjuvantshttp://www.ncbi.nlm.nih.gov/pubmed/20708902 The common immunogenic etiology of chronic fatigue syndrome: from infections to vaccines via adjuvants to the ASIA syndromehttp://www.ncbi.nlm.nih.gov/pubmed/22054760 Aluminum as an adjuvant in Crohn’s disease inductionhttp://lup.sagepub.com/content/21/2/231.abstract Aluminum is a potential environmental factor for Crohn’s disease induction: extended hypothesishttp://www.ncbi.nlm.nih.gov/pubmed/17804561 Link to comment Share on other sites More sharing options...
amysash Posted September 30, 2014 Report Share Posted September 30, 2014 The Vaccine Information Sheets on the CDC's own website are also very telling. For instance, re the MMR vaccine the CDC advises: "Some people who are sick at the time the shot is scheduled may be advised to wait until they recover before getting MMR vaccine." To me, this supports the theory that your immune system can literally get overwhelmed - already sick and adding 4 viruses (probably more that day if you are following recommended schedule) isnt' a good idea. CDC also says: "Tell your doctor if the person getting the vaccine: Has ...another disease that affects the immune system Is being treated with drugs that affect the immune system... --- Has gotten another vaccine within the past 4 weeks --- Any of these might be a reason to not get the vaccine, or delay vaccination until later." Again, to me they are acknowleding that you don't kick a man while he's down, ie don't overload the immune system when it's already workign overtime. Finally, I look at the warnings that are printed right on the vaccine information sheets including: "Several other severe problems have been reported after a child gets MMR vaccine, including: Long-term seizures, coma, or lowered consciousness Permanent brain damage" Link to comment Share on other sites More sharing options...
kim Posted October 2, 2014 Report Share Posted October 2, 2014 Ariel,I can't find anything that I posted that gave you the impression that I doubted that your sons illness was triggered by any thing other than what you stated. I was hoping to have a discussion about the immune system in general and what effects vaccination could have either positive or negative in an infant vs. an older child or even adults (prior to or after an autoimmune reaction). I'm sorry if I phrased that in a way that offended you. You were miles and miles ahead of me in the medical decision making regarding vaccination for my own children. I just blindly trusted. I'm to the point where I'm almost ready to pass the baton to my young adults and let them make their own decisions. They will be parents that will have to wade through all of this themselves in the near future (it comes faster than you can imagine). I was actually looking for information on the shingles vaccine (I've always worried about them contracting chikenpox/shingles at an older age) when I ran into the news of the "whistleblower," Thompson/CDC. My kids were born during the years of the highest thimerosal exposure. I know how that was handled and what was being said behind closed doors (Simpsonwood). Yea, his remarks regarding thimerosal/tics in the video that I posted sat off a boat load of bad emotions.I do have to say though, that I don't necessarily think of adverse events relating to vaccines as being something that always happens within a week or month etc. I have been looking at possible long term effects for a number of years. I mean, if you look at the "tic," data they are looking at outcomes in 7-10 yr. olds vs exposure at 0-7 mos. etc. I think at least regarding thimerosal, it's safe to say that adverse effects can show up down the road. I want to add that I'm not suggesting that they played any part in your own childrens medical picture." I would venture to guess that you did not allow any thimerosal containing vaccines, I'm only using that as an example. On a different note, I was looking at the "mouse study," recently and noticed that they had used Complete Freund's adjuvant to induce the antibodies to strep. That confused me because that would provoke the TH1 cytokines? IDK, I would have to read it again, I haven't had any computer time recently. http://www.jneurosci.org/content/24/7/1780.fullThese are just some things that were in my head during that conversation. I hope that gives you a little better idea of where I was coming from. The background info from Hilary's site was just a jumping off point for discussion, that's why I said "not to prove," anything.Hope there are no hard feelings. Link to comment Share on other sites More sharing options...
Kayanne Posted October 4, 2014 Report Share Posted October 4, 2014 I will say - I haven't looked at your link yet - but his onset DID look identical to autism. Had we had another doctor - I'm certain he would've been "labeled" and that would be that. What struck our doctor as odd in his presentation was the verbal regression - he was very advanced for his age - well over 50 words at his 15 month appointment and speaking in full, grammatically correct sentences by his 18 month check up. Within a few weeks of the strep infection - he lost almost all verbal ability. Had the regression been less drastic - if he had been on par with his peers verbally and then regressed - autism would've fit. I am so grateful that my daughter's PANDAS happened at the end of a very successful year in kindergarten. If it had happened just 3 years prior, she would have gotten an autism diagnosis. She regressed in a matter of weeks--high functioning verbal and congnitive skills gone! You probably remember my daughter's story, I know I remember when you started posting. I hope your children are now symptom free! I pray that for all of our children! I appreciate the additional info, but in my son's case there is absolutely no connection to his onset and vaccines. Furthermore, we have a genetic history of the HLA B27 genetic mutation, which makes our family predisposed to autoimmune and inflammatory conditions genetically, I had chronic strep as a child and our family also has a family history of Rhuematic Fever and strep complications. Two different PANDAS experts have said unequivocally that I had it as a child, and one look at my medical history would leave no one in doubt - my chart reads like a textbook for PANDAS until I was in my early 20's (which is when they theorize that "classic" PANDAS kids may "outgrow" the immune response). To date, there has been no research connecting HLA B27 to PANDAS directly, but there has been research linking it to chronic strep and RF. I also know that vaccines play no part in my daughter's PANDAS. My sister has AS and has tested positive for the HLA B27 gene. She swears by the CVS brand of Curcurmin and getting her anemia under control by taking iron has made a huge difference for her. I also have family history of RF and complications to strep. Ariel, is there a lot of ADHD (inattentive type) in your family? There is a lot in mine...Just curious. Thanks Link to comment Share on other sites More sharing options...
nicklemama Posted October 4, 2014 Report Share Posted October 4, 2014 Amysash- that was a treasure trove of citations. THANK YOU! rowingmom 1 Link to comment Share on other sites More sharing options...
amysash Posted October 6, 2014 Report Share Posted October 6, 2014 Here are a couple more links: Impact of environmental factors on the prevalence of autistic disorder after 1979 http://www.ms.academicjournals.org/article/article1409245960_Deisher%20et%20al.pdf Vaccine bombshell: Baby monkeys given standard doses of popular vaccines develop autism symptoms http://www.naturalnews.com/035787_vaccines_autism_monkeys.html I'd check out the movie The Greater Good, and the corresponding website (where I found the links to the articles). Link to comment Share on other sites More sharing options...
airial95 Posted October 7, 2014 Report Share Posted October 7, 2014 Kim, no hard feelings at all, like I said, I'm sure you didn't mean for your words to come across the way they did. Kayanne, my son is the first to really present with typical ADHD symptoms, and even with PANDAS treatments they didn't subside until we added an ADHD medication (vyvanse). The undeniable success of the vyvanse in controlling the ADHD is leading our team to think of it separately from the rest of his PANDAS symptoms. (The theory being that if it was caused by the inflammation/immune response the ADHD meds wouldn't have an impact, and would actually compound the issues.) We have tried 3x to take him off the meds with no success even when ALL of his other PANDAS symptoms were in remission. No one else on my mom's side of the family (with the gene mutation) was ever formally diagnosed, however, looking back I often wonder about my sister as a child as well as one of my cousins - Link to comment Share on other sites More sharing options...
rowingmom Posted October 9, 2014 Report Share Posted October 9, 2014 J.J. Bradstreet, M.D.; J. El Dahr, M.D.; A. Anthony, M.B., Ph.D.; J.J. Kartzinel, M.D.; A.J.Wakefield, M.B. 2004. Journal of American Physicians and Surgeons Volume 9 Number 2 Summer 2004 Detection of Measles Virus Genomic RNA in Cerebrospinal Fluid of Three Children with Regressive Autism: a Report of Three Cases http://icdrc.org/documents/bradstreet.pdf Link to comment Share on other sites More sharing options...
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