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PANDAS vaccine injury?


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What I saw matches the info you've posted-- and clearly these girls were born prior to 2008...

 

This is from the NY State DOH website:

 

 

Pneumococcal conjugate vaccine is recommended for all children less than 24 months old and for children between 24 and 59 months old who are at high risk of disease. Persons who are 2 years and older and at high risk for disease (e.g., sickle cell disease, HIV infection, or other conditions that weaken the immune system) should also receive PPSV23.

 

Adults aged 19-64 years who have asthma or who smoke should receive a single dose of PPSV23.

 

All adults should be vaccinated with PPSV23 at age 65 years. Those who received PPSV23 before age 65 for any indication should receive another dose of the vaccine at age 65 or later if at least 5 years have passed since their previous dose. Those who receive PPSV23 at or after age 65 should receive only a single dose.

 

In New York State, pneumococcal conjugate vaccine is required for pre-kindergarten attendance for children born on or after 1/1/08.

 

 

If the recommendation is only for high risk disease patients, why is this vaccine mandated for ANY age group in ANY state for school entry???? My dd was given this vaccine WITHOUT being in the high risk group, it was presented to me that it was part of the "normal" schedule and would help with ear infections..... shortly after, ear infections and asthma started. Seems there is misinformation all around. I will not let my dd be a vaccine guinea pig anymore though.

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Just to add to the vaccine curiosity, I wonder how many dementia/parkinsons patients have been really good about getting their yearly flu vax ????? I know they are pushed on the elderly population as well, and those senior centers have their vax clinics right on time every year.

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Priscilla,

 

The vaccine that I believe you're referring to is probably the PCV (the series that your daughter received). That one is on the routine schedule. The one that thenmama and I were discussing is PPSV23. Honestly, I know how confusing that this can get. One of the first things that you might want to do, is to get familiar the schedule and then start researching.

 

http://www.cdc.gov/v...schedule-pr.pdf

http://www.cdc.gov/v...schedule-pr.pdf

 

 

Jag,

 

I wanted to point out that the paper that I posted somewhere here about the conjugate vaccines is a hypothesis only. Without going back and reading again, I got the impression that his idea was that by lowering the age that the conjugate vaccines were given, it may have contributed to the autism epidemic by effecting Myelin.

 

Also, I went back to edit the post about the meningococcal vaccine. It looks like there is a new one that I wasn't aware of. Here is what I added.

 

 

EDIT: MENVEO looks like the latest approved meningococcal vaccine. It is conjugated. I suspect the unconjugated vaccine is not going to be readily available in most practices. Do notice the warning regarding of Guillain-Barré Syndrome. Further warnings are included in the packge insert

http://www.menveo.com/

https://www.novartis...motional_PI.pdf

Edited by kim
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more from vax"truth" dot org:

 

In the comments below the Mechtler-pneumovax post, she responds to a commenter-- here are the lowlights:

 

"If you have read my other articles about The LeRoy Twelve (now 19 and counting), you will know that I have also asked for Dr. Trifiletti to investigate the vaccine-injury connection, particularly as it relates to the mandatory vaccination of students in New York with Pneumovax, which is not recommended for mass vaccination. I am very concerned that the students who are diagnosed with PANDAS may be lulled into a false sense of security if they have a positive response to antibiotics. It this is vaccine-related, they need to know that so they can protect themselves from future injury."

 

If she really did contact him, I'd love to know how Dr. T responded to her request!

 

and:

 

"I do agree with your last question completely. I would also like to see a comparison of titers, particularly for the 23 strains contained in Pneumovax. There appears to be a reason why these particular students are demonstrating an inappropriate immune response to the strep bacteria. I would love to know more about why that is happening. That’s exactly what I’ve been calling for all along.

 

I do have to say that while I think Dr. Trifiletti’s explanation of PANDAS is too simple, I at least agree with his approach of doing the bloodwork. Dr. Mechtler’s diagnosis of “Conversion Disorder” without ruling out medical conditions first is inexcusable and goes against the multi-axial assessment guidelines of the DSM-IV-TR. To me, that just smacks of covering the butts of those who ply him with hundreds of thousands of dollars in speaking fees."

 

It's not Dr T' definition of PANDAS. Obviously he can't re-define a medical condition while he's under a microscope for even raising it as a possibility. Plus, the only definition she's interested in is her own, so she'd only be satisfied if the pneumococcal vax is named as as the cause. Maybe she'll contact Swedo about that one ;)

 

How can one be an anti-vax crusader and clearly not get the basic science stuff? And she claims to have treated people's children with biomed!

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Kim (and anyone else who has infor for me) - you seem to have done so much research on the vacs- which I am envious of. I don't have the time or energy to do it right now, but wanted to see if you would give me a few thoughts.

 

I have two pandas kids who now react to pretty much any immune challenge: strep, colds, virus, loose teeth, illness exposure. After what we have been through, I cannot sit and watch someone willingly inject them with something that is targeting their immune system- this is not even mentioning the ingredients in the vax.

 

My kids, however, are 8 ant 11- so they are pretty fully vaccinated. HPV is out of the question for them, not doing it. But, there are three that I am left wondering about:

 

1. Tetanus. DD 11 is overdue (I need to test her titers). I imagine this can realistically wait and be given if there is a laceration that could have been contaminated with soil. If this happened- is there a tetanus booster that comes alone?

 

2. Meningococcal. Certainly meningitis is a rather rare, but scary and fast moving disease. However, the vaccination is pretty scary to me (as a pandas parent as well). Any thought on the risk/ benefit ratio, or the safety of the vaccination? I would not even consider this until college age.

 

3. Hep A, Typhoid and vacs needed for certain international travel. I have some long- term (after we recover from our pandas exependitures, and I go back to work) dreams of travel to China, and also volunteer vacations in Africa- with my kids. I know typically some vaccines are required (?) for this type of travel.

 

Thanks!!

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While I would have been inclined to support her, I'm now just outraged.

 

thenmama,

 

In the interest of fair and balanced outrage, I have to say that I have encountered many medical professionals in the last several years who have spouted info that has had no real basis or was just down right inaccurate too. A couple of examples

 

Mercury is illegal in this state. There is no such thing as mercury in any vaccine (refused to get package insert from multidose flu vaccine..had never heard the word thimerosal) insisted we wouldn't be there if I had gotten my son his flu shot. Next day, family Dr. swabs strep positive. This child was violently ill, "Dr. uninformed," insisted it was viral flu. It got ugly enough for a receptionist to chase me down in the parking lot and ask me if I minded telling her what that was all about.

 

Bee's are filthy animals. You need a tetanus vaccine. Tetanus used to kill hundreds of thousands of people (In the US? highest ever reported year around 560?).

 

I've posted this one before, but it's a favorite. In regards to aluminum & thimerosal "I don't believe any of those things are in vaccines." The Dr. who started those rumors has apologized. Again, refused to look at vax insert.

 

I've got a real problem with this fella too

 

http://therefusers.com/refusers-newsroom/vaccine-fanatic-says-refusers-should-be-sued-by-disease-victims-chairman-of-american-academy-of-pediatrics-committee-on-bioethics-michigan-law-review/

 

CHOICES SHOULD HAVE CONSEQUENCES: FAILURE TO VACCINATE, HARM TO OTHERS, AND CIVIL LIABILITY

Michigan Law Review

Douglas S. Diekema

 

excerpt

 

Should an individual harmed by an infection transmitted from a child whose parents chose to forgo vaccination have a negligence claim against those parents? While I do not hold a legal degree and therefore cannot speak directly to issues of law, as a physician and ethicist it seems to me that the basic elements that comprise negligence claimsharm, duty, breach of duty, and causationare met in some cases where parents forgo vaccination.

 

 

Has he not heard of serotype replacement? Should children who contracted strains of S pneumonia that were not included in the original 7 strain vaccine, sue parents who vaccinated their child with it? Ok, now we've got a 13 strain vaccine. There are around 90 known serotypes. What's next?

 

How about staph

 

http://jb.asm.org/content/190/7/2275.full

 

Nasal colonization by Staphylococcus aureus is a major predisposing factor for subsequent infection. Recent reports of increased S. aureus colonization among children receiving pneumococcal vaccine implicate Streptococcus pneumoniae as an important competitor for the same niche.

 

 

How about these folks

 

http://cid.oxfordjournals.org/content/53/12/1230.full

 

With the dramatic reduction of Hib disease in young children because of universal vaccination, the epidemiological trends of H. influenzae have shifted, and recent reports describe an increase of disease in adults aged >65 years [12] and an increase of H. influenzae disease caused by non-b encapsulated serotypes [1315].

Surveillance for H. influenzae disease is essential to monitor for shifts in disease incidence, to understand the burden of invasive H. influenzae disease, and to develop public health prevention strategies. The greatest burden of disease occurs at both ends of the life spectrumin the youngest infants and in older adults.

 

 

If you want to know what those "prevention strategies," might include keep reading

 

The non-Hib invasive disease burden might be an opportunity for prevention through development of new vaccines.

 

 

"Opportunity," is an interesting word. "Necessity," might have made me feel a little better.

 

Again, inaccurate and incomplete information is maddening. However, there is seems to be a lot of it around.

Edited by kim
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Kim (and anyone else who has infor for me) - you seem to have done so much research on the vacs- which I am envious of. I don't have the time or energy to do it right now, but wanted to see if you would give me a few thoughts.

 

I have two pandas kids who now react to pretty much any immune challenge: strep, colds, virus, loose teeth, illness exposure. After what we have been through, I cannot sit and watch someone willingly inject them with something that is targeting their immune system- this is not even mentioning the ingredients in the vax.

 

My kids, however, are 8 ant 11- so they are pretty fully vaccinated. HPV is out of the question for them, not doing it. But, there are three that I am left wondering about:

 

1. Tetanus. DD 11 is overdue (I need to test her titers). I imagine this can realistically wait and be given if there is a laceration that could have been contaminated with soil. If this happened- is there a tetanus booster that comes alone?

 

2. Meningococcal. Certainly meningitis is a rather rare, but scary and fast moving disease. However, the vaccination is pretty scary to me (as a pandas parent as well). Any thought on the risk/ benefit ratio, or the safety of the vaccination? I would not even consider this until college age.

 

3. Hep A, Typhoid and vacs needed for certain international travel. I have some long- term (after we recover from our pandas exependitures, and I go back to work) dreams of travel to China, and also volunteer vacations in Africa- with my kids. I know typically some vaccines are required (?) for this type of travel.

 

Thanks!!

 

Yeah, I have the same questions.

 

My next-door neighbor's brother died suddenly of Meningitis...so I would take that seriously.

 

My PANDAS dd also wants to travel internationally, and I think, ugh, vaccinations.

 

DCmom, were you the one who had a dd that wanted to be a vet? With, any puncture wounds (including bite wounds)docs will want to make sure the Tetanus is current. Also, I believe it is still standard practice (at least at many vet schools?) to vaccinate all vet students for Rabies.

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It really depends on where you are traveling as to whether or not you might need vaccinations. I lived in Germany for two years and traveled all over Western and Eastern Europe, including Russia, w/out nary a vaccination (aside from those few I received decades ago as a child). Now, the continent of Africa, some Asian countries you are talking an entirely different matter.

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Of course it is the Asian countries I am most interested in :( However this is years away....

 

Yes- EAmom- one seriously wants to be a vet. Believe it or not, our whole family has our rabies series- so she is already covered there (I guess I should get copies of that)- I guess only needs a booster upon a bite?

 

Meningococcal- I am thinking I would like to have it done prior to college?

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In the interest of fair and balanced outrage, I have to say that I have encountered many medical professionals in the last several years who have spouted info that has had no real basis or was just down right inaccurate too.

 

Kim,

 

I agree with you that there are problems on this front all the way around. But, I also think that we can't let individual polluters off the hook just because the pond is already contaminated. To take a stand against pollution while spewing your own toxins into the water makes you no better than those you're railing against--you're equally unethical and untrustworthy, just standing on a different bank...

 

And looking from there to the bigger picture, this method of resistance is simply that--resistance. And this unproductive, hostile dichotomy leaves those who're undecided with nowhere to turn, nothing to trust as they try to choose what's best between one set of lies and another. The opposing sides of the issue then just perpetuate the opposition and animosity, by hurling accusations back and forth and easily dismissing one another because neither side is operating honestly, ethically, or in the best interest of ALL involved.

 

I would LOVE to see both sides let go of that dysfunctional model and meet where they agree rather than where they diverge: nobody wants children to suffer or die due to preventable illness and nobody wants children to suffer and die due to the vaccinations used to prevent those illnesses. What if they started there? What if both came to the table willing to work as allies? If they stopped trying to disprove one another, stopped retaliating by funding and producing studies designed to counter what the other camp says, and instead started working toward the same goal--protecting children. Maybe started funding and producing studies aimed at figuring out which children the vaccines are safe for, and which they may harm, and how to proceed from there.

 

Anyway, that's how it'd play out in the just and peaceful world of my imagination, but out here in the real world it ain't gonna happen b/c of $$, deep-seated (not unwarranted) mistrust, and a cultural proclivity for divisiveness.

 

Sigh. Think I'll crawl back into my head for a while this afternoon...

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Of course it is the Asian countries I am most interested in :( However this is years away....

 

Yes- EAmom- one seriously wants to be a vet. Believe it or not, our whole family has our rabies series- so she is already covered there (I guess I should get copies of that)- I guess only needs a booster upon a bite?

 

Meningococcal- I am thinking I would like to have it done prior to college?

 

If she's already had the series, I don't know what would happen if she went to vet school, maybe drawing titers would be enough if they are still high?

 

If she does get bit, what happens is they quarantine the animal (usually 10 days). If the animal is okay after 10 days, she doesn't need to do anything.

 

If the animal dies (or is euthanized) they can determine (post-mortem) if the animal in question had rabies.

 

But, yes, if it does turn out that she gets bit by a rabid animal, she'd still need boosters/after a bite, but I think the series is less involved.

 

Also, there is the problem if you don't have the animal that bit (like in Precious' case). Did you see this? It's an interesting/cool story!

http://abcnews.go.com/Health/california-girl-us-survive-rabies/story?id=13830407

 

and here's a sad story of a US soldier who contracted rabies in Iraq

http://seattletimes.nwsource.com/html/health/2016438574_soldierrabies07.html

 

And yeah, it seems like the Menigoccal is important if you are in a college (esp dorm) situation.

Edited by EAMom
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We all had the rabies series (this was prior to pandas, thank goodness) because we woke up one night and a bat was flying around in the hallway outside the kid's bedrooms (lovely!). I freaked out! Then my dh freaked out and killed the bat by stomping on it. Later we found that anyone who has been sleeping in a room with a know bat, is at risk. There apparently was a case in our area of the country where a toddler died from rabies, after spending the night in a room where they found a bat the next day, even though she had no visible marks. (Bats teeth are like pins). So, since the bat's skull was crushed, we ALL needed the rabies series!!

 

EAMom- I think your dd is around the age of mine, did you do a tetanus booster or test titers?

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The girls' illness is likely due to strep exposure via the mandatory pneumovax. This is why NY State wants no outside interference.

 

OHHHH Boy, thenmama, are you or anyone else thinking of taking her to task on those comments?

 

Can anyone from NY even confirm the statement about pneumonia vaccines? Not talking about PCV series, but mandating the PPSV?

 

If you look at the Recommended Schedule, you can see PPSV is only rec. for high risk groups. The first one is for 0-6 the second is ages 7-18

http://www.cdc.gov/vaccines/recs/schedules/downloads/child/0-6yrs-schedule-pr.pdf

http://www.cdc.gov/vaccines/recs/schedules/downloads/child/0-6yrs-schedule-pr.pdf

 

I don't see anything like that here and I think that was revised in 2011

 

http://www.health.ny.gov/publications/2370.pdf

 

I am the website administrator for VaxTruth.org and I always check the links to our website to track them. I noticed your concerns and echoed them to the author. I am writing to inform you of a retraction that was made on this subject, you can find the link from the author here.

 

At VaxTruth we welcome questions and we are on a crusade for truth, if we are wrong, we correct it. We apologize for writing misinformation, thank you for reading our article and for your feedback, it indirectly alerted us to a misinterpretation of the facts that we are obliged to repair. We appreciate your support and or criticism of any articles or facts we publish.

 

If you ever find something on our site you believe to be a factually inaccuracy, please contact us through our site and let your concerns be known.

 

Thank You!

Spencer Pond

Vaxtruth.org

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In our discussion threads (where her site has been mentioned and criticized), a member brings up Dr. B's PANDAS s. pneumo titer failure estimate of 99%. If that member was not the one to have emailed her about this, then it seems like she was either sent the post content by someone in our forum community, or perhaps she's visiting this forum-- reading, poaching, and spinning for her own purposes. In looking over her site, I also realized that her article pointing to Mechtler's big pharma payouts went up right after I posted that same info to this forum, and her article provides the same link to the info that was included in my post (there are multiple individual links that yield similar info on the doc, so I found it curious that she chose that one-- especially since that link only shows one year and there are pages with more recent info available). Perhaps it's just a coincidence and it occurred to her to do the same research on the same site and it was also coincidence that she published it later on that same day that I'd made my post and chose to link the same page. Our stars aligned that day. I honestly don't care if her piece was prompted by the info in my post-- I'm happy to see Mechtler's sleaze factor to outed to a wider audience. What I do care about, though, is whether she, or someone among us, is abusing the good faith of this forum community and using what transpires here in a manner that could do the PANDAS community at large a great disservice.

 

I know it is a public forum and anyone can read or join, but I care deeply about PANDAS and those whose lives are affected by it, and this forum community is important to me.

 

While I would have been inclined to support her, I'm now just outraged.

 

I am the website administrator for VaxTruth.org and I always check the links to our website to track them. No one used the information that you posted earlier, the information the author used is as she asserted, a contact from a parent through our contact info on our website or personally through facebook. I only noticed your post because of the high link rate from the page and decided to check out the source. I noticed your concerns and echoed them to the author. I am writing to inform you of a retraction that was made on this subject, you can find the link from the author here.

 

At VaxTruth we welcome questions and we are on a crusade for truth, if we are wrong, we correct it. We apologize for writing misinformation, thank you for reading our article and for your feedback, it indirectly alerted us to a misinterpretation of the facts that we are obliged to repair. We appreciate your support and or criticism of any articles or facts we publish.

 

The author has a child with PANDAS, just the same as many of you do. She is also on a quest to find the answers. Her hypothesis is a very good and thorough one. We all want answers for our children and for the students in Leroy. I know we may not agree of every aspect of the disease or it's cause, but we are fighting for answers together regardless of the avenue.

 

If you ever find something on our site you believe to be a factually inaccuracy, please contact us through our site and let your concerns be known.

 

Thank You!

Spencer Pond

Vaxtruth.org

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DCmom,

 

Dr B tests for tetanus titers in the initial work up. My girl was still covered. I'm going to ask him next week if the failing of Hib and Pneum., but tetanus protection is a common profile amongst his pandas. I'm also going to ask him about meningitis. I would definitely run the titers on tetanus.

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