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I agree with pow pow and EAmom, and don't think vaccines are a cause for pandas.

 

However, what I do think is they could be the cause of a pandas episode, in an already pandas kid.

 

In which case, if your child has milder and undiagnosed pandas, and they get vaccinated, this could trigger a pandas response.

 

I am not a proponent of NO vaccinations (and my kids are pretty fully vaxed). But I am no longer a believer in following the mainstream schedule. If I were to have a new baby (who would obviously be at high risk for pandas), I would evaluate each vaccination MYSELF, to determine the risk of what we are vaccinating against, and if I considered it necessary, WHEN that risk enters their life, and have the vaccine done then, one at a time, when they are not/have not been sick. I am also no longer a believer in the flu shot, unless there are other medical circumstances.

 

I think the outrage to vaccinations in not really about the vacs themselves, but more about the lack of thoughtfulness about how and when to administer them to each precious child.

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EAMom,

 

Over the years it has occured to me that I have learned the most (in many instances) where people argued on threads. I mean some of them were down right nasty. They were, however, well informed people that were passionate about their subject. These forums (ACN) seem to be filled with some of the nicest people! I bet you and I can have different points of view here and still learn something from each other.

 

I'm glad that you pointed out the inaccuracies in the blog regarding PANDAS. Who ever made the remark about speaking to Dr.s and repeating that type of misinformation and how detrimental it is, is sooo right.

 

Ok, on this statement, I need to ask you something that I honestly don't know.

 

She's also pretty heavy-handed, anti-long term antibiotics. And seems convinced that vaccines are the PRIMARY cause of PANDAS (okay folks, remember, those mice didn't get ANY vaccines). (underling mine)

 

I believe that mouse was a strain that was prone to autoimmunity?

 

I completely agree that a child who already has PANDAS should be extremely leary of vaccines and that vaccines can cause problems in that situation. But, that is not the same as saying, it was the vaccines that caused it all in the first place. To me that's Strep (or even Mycoplasma or Lyme for those with those diagnoses). Period.

 

Have you ever read anything about the operation of the immune system during pregnancy or the infants immune system shortly after it's born? I'm not going to post a bunch of links, but Hilary Butler's article in the "adjuvant," thread is a good one. Basically, she explains how the TH1 (innate) shuts down during pregnancy so the fetus isn't identified as a "foreign," body and you are operating with the humoral (aquired...think antibodies here) or TH2 system, primarily. The baby and Mom will slowly switch back.

 

Decided to pull some of that info out of the artcle. I'm going to post this much now as I'm just hoping to lay a little ground work so other info. might make more sense regarding vaccinations. I also want to add that I surely don't have this all worked out in regards to PANS or anything else, but I believe that the vaccination program as it stands today IS involved in messed up immune systems, along with environment genetics etc.

 

http://www.whale.to/vaccines/butler.html

 

excerpt

 

By 1992, Pabst HF showed that vaccines could induce antibodies in the mother of a different isotype than that of the natural disease (Pediatr Res. 1992; 31: 173A) leading to speculation that this, and the lower titres, was the cause of babies not getting immunity from their mothers any more.(Arch Pediatr Adolesc Med Vol 148, July 1994, pg 698.)

 

It was only with the full realisation of the difference between the Th1 and Th2 immune system, that real difference in immunity were able to be characterised with more accuracy (I say more, because they say there is another cytokine class there as well, which they don’t understand what its function is. Who knows what they will find when they factor that in!)

 

The breakthrough came with the realisation that allergic people, people with asthma and immune system problems had immune systems which were skewed towards the Th2 system. So how do you get an immune system skewed towards Th2? It’s rather complicated…

 

“Modern vaccinations, fear of germs and absession with hygiene are depriving the immune system of the information input upon which it is dependent. This fails to maintain the correct cytokine balance and fine-tune T-cell regulation, and may lead to increased incidences of allergies and autoimmune diseases.” (Immunology Today, 1998, Vol 19, No 3 pg 113)

 

Just how much do medical people know about cytokines. Prior to the above article, Medical knowledge could be summarised by”

 

“cytokine modulation of immunity generated by vaccines has only been addressed in a very simple manner so far, and few studies have been carried out where the response has been fully characterized…Redirection of the immune response following immunization appears to be a fundamental problem which has to be overcome with some present, as well as future vaccines. Studies in which this concept is being assessed are in their infancy” Pg 112, “Modern Vaccinology”, By Edouard Kurstak, Pub. 1994.

 

To be precise, the only things they had looked at was the “end-product” i.e. antibodies, but there was a realisation that vaccines “redirected” the immune system. In other words, vaccines produce a different immunity to disease. Immunology Today gets more specific:

 

“Vaccination replaces recovery from infections with a rather different type of immunological stimulus. This can have unexpected effects. In the measles system, both vaccination and the infection itself have profound and long-lasting effects on the immune system, but these effects are not the same.”

 

“For example, recovery from natural measles infection reduces the incidence of atopy, and of allergic reactions to house dust mite to half the incidence seen in vaccinated children, suggesting a systemic and non-specific switch to Th1 activity.”

 

The interesting thing is that this new knowledge comes from another modern vaccine disaster - the Gulf War syndrome. So what relevance does this have to vaccinating babies? The author of this study says:

 

“indeed learning (immunological) is an absolute necessity, and these systems have evolved in the “anticipation” of appropriate inputs provided in an appropriate sequence after birth, and continuing throughout life”

 

The immune system has two “sides”. One is Th1, which is the usual response to diseases caught naturally. A healthy immune system has a “bias” towards Th1. Th2 is the “other” side, and people who have allergies, asthma and disease with an auto-immune origin have what is known as a Th2-skewed immune system. (New England J. Med 1992, Vol 326, No 5, 298-304 was one of the first references, now there are hundreds).

 

When a mother is pregnant, her pregnancy is controlled by cytokines, and requires a predominance of Th2 cytokines in order not to reject the baby. (Acta Paediatra 1997; 86: 916-918) A “Th1 driven” immune system would treat the baby as a graft, thereby miscarrying. Drugs are used to suppress the immune systems of transplant recipients for the same reason.

 

When a baby is born, it’s immune system is initially Th2-skewed, by virtue of the mother’s immune system. The mother’s immune system changes very quickly, and her breastmilk will help to change the baby’s balance, and will also “buffer” and assist in the development of the baby’s immune system.

 

The first years of life if the time when the “difference” between “vaccine” and “natural” immunity is so important, because most diseases promote a Th1 immunity. The portal of entry, and learning pathways teaches and matures the immune system, and helps in the prevention of both allergy-development and auto-immune disease. The “antigen” is processed, with the help of immunological factors in breastmilk and the baby’s cued-in immune system through the mucous membranes and the various “layers” of the immune system, producing an end-point called antibodies.

 

Some recent research which is as yet unpublished (I wonder who would have the guts to publish it) is looking at hundreds of mothers who have abnormally high level of antibodies to measles following vaccination. Their children, who became autistic after the MMR vaccine, are also found to have abnormally high levels of antibodies to Measles. The unsolved puzzles to this question are: Is there an inheritted immuno-dysfunction here? Did the high level of antibodies from the mothers cause the babies to have a catastrophic reaction to the MMR vaccine? What cytokine model are we looking at in the children?

 

The answer is that we don’t know, because no-one will research these issues. Not one vaccine company wants even the remote possibility of corporate suicide if the results show that vaccines do, as thought, damage the basic integrity of the immune system in some people.

 

The medical research that has so far been published, already makes it clear that vaccines can and do skew the immune system towards Th2 system, which is not what we want. Researchers looking at the cytokine balance of Gulf War Vets have found that their cytokine system is Th2 skewed. Right from the start, the soldiers blamed the vaccines they were given, but the medical people didn’t want to know so research centred around that fact that it was “all in their minds” (some doctors still do think that), then looked at a mite-sized sand fly in the middle east called “Phlebotomus papatasi” which can cause leishmaniasis (the Honolulu Advertiser, December 11, 1994, Front page). The next excuse was that an unlicensed drug called pyridostigmine bromide which the US thought would protect against nerve agents that Iraq might use could have done it. But the nail in all those coffins came when it was found that military personnel who had never gone to the middle east and experienced either mites or pyrodostigmine were also showing identical problems. All those tested so far appear to have Th2-skewed immune systems, and the only common factor is the vaccines given to them all. In a medical article discussing this skewing affect it was written:

 

“Indeed, the same effect can occur sporadically in the general population as a result of vaccinations or other Th2-inducing environmental stimuli and infections, and may also account for the frequency of chronic fatigue syndrome.”

 

“Unlike BCG, most of the vaccines that are administered to children are Th2 inducing; furthermore the only adjuvant licenced for use in adults is alum which is a Th2 adjuvant. Pertussis is given to children at the same time as other vaccines in order to exploit its adjuvant effect, but this is also Th2 inducing. The effects of these vaccines are mediated largely through neutralizing antibodies, so Th2 responses are adequate, but they do not provide a balanced stimulus for Th1 activity” (pg 114)

 

If an end-point is all they look for, it’s all they see. And if they assume that is the be-all and end-all of immunity

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My children are fully vaccinated, and I don't see any correlation to vaccines and PANDAS in my daughter's case. Since PANDAS has hit my house, I've agreed to get my children the flu shots too. My daughter was at a healed point when we've done them. If she was still in an exacerbation, I wouldn't have done it.

 

I just can't take that website seriously (vaxtruth.org)...after the blatent misinformation put up about PANDAS. Perhaps it's unfair to make this judgement, but if she is willing to just put up that c%^&, then what misinformation has she put up about vaccines? That is just where my mind goes...of course everyone is free to make their own conclusions.

 

I've gotten into the habit of googling such things as "critisims of xxx.org" in order to get a more balanced view.

 

EAmom and dcmom, once again you summarize how I feel...I don't need to add anything else. Thanks for all the contributions to the forum. I wish I had more time to contribute like I did in the past, but I'm trying to climb out of the chaos that has happened in my house as a result of being obsessed with PANDAS since 2009.

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The first years of life if the time when the "difference" between "vaccine" and "natural" immunity is so important, because most diseases promote a Th1 immunity. The portal of entry, and learning pathways teaches and matures the immune system, and helps in the prevention of both allergy-development and auto-immune disease. The "antigen" is processed, with the help of immunological factors in breastmilk and the baby's cued-in immune system through the mucous membranes and the various "layers" of the immune system, producing an end-point called antibodies.

 

 

Kim,

 

Is this saying that the skewing toward Th2 activity due to vaccines "cheating the immune system of learning its lessons properly" results in limited production of antibodies or over production of antibodies, or both? If both, why? Why do we have kids half of whom produce way too many and half of whom don't produce hardly any antibodies?

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EAMom,

 

Over the years it has occured to me that I have learned the most (in many instances) where people argued on threads. I mean some of them were down right nasty. They were, however, well informed people that were passionate about their subject. These forums (ACN) seem to be filled with some of the nicest people! I bet you and I can have different points of view here and still learn something from each other.

 

I'm glad that you pointed out the inaccuracies in the blog regarding PANDAS. Who ever made the remark about speaking to Dr.s and repeating that type of misinformation and how detrimental it is, is sooo right.

 

Ok, on this statement, I need to ask you something that I honestly don't know.

 

She's also pretty heavy-handed, anti-long term antibiotics. And seems convinced that vaccines are the PRIMARY cause of PANDAS (okay folks, remember, those mice didn't get ANY vaccines). (underling mine)

 

I believe that mouse was a strain that was prone to autoimmunity?

 

I completely agree that a child who already has PANDAS should be extremely leary of vaccines and that vaccines can cause problems in that situation. But, that is not the same as saying, it was the vaccines that caused it all in the first place. To me that's Strep (or even Mycoplasma or Lyme for those with those diagnoses). Period.

 

Have you ever read anything about the operation of the immune system during pregnancy or the infants immune system shortly after it's born? I'm not going to post a bunch of links, but Hilary Butler's article in the "adjuvant," thread is a good one. Basically, she explains how the TH1 (innate) shuts down during pregnancy so the fetus isn't identified as a "foreign," body and you are operating with the humoral (aquired...think antibodies here) or TH2 system, primarily. The baby and Mom will slowly switch back.

 

Decided to pull some of that info out of the artcle. I'm going to post this much now as I'm just hoping to lay a little ground work so other info. might make more sense regarding vaccinations. I also want to add that I surely don't have this all worked out in regards to PANS or anything else, but I believe that the vaccination program as it stands today IS involved in messed up immune systems, along with environment genetics etc.

 

http://www.whale.to/vaccines/butler.html

 

excerpt

 

By 1992, Pabst HF showed that vaccines could induce antibodies in the mother of a different isotype than that of the natural disease (Pediatr Res. 1992; 31: 173A) leading to speculation that this, and the lower titres, was the cause of babies not getting immunity from their mothers any more.(Arch Pediatr Adolesc Med Vol 148, July 1994, pg 698.)

 

It was only with the full realisation of the difference between the Th1 and Th2 immune system, that real difference in immunity were able to be characterised with more accuracy (I say more, because they say there is another cytokine class there as well, which they don’t understand what its function is. Who knows what they will find when they factor that in!)

 

The breakthrough came with the realisation that allergic people, people with asthma and immune system problems had immune systems which were skewed towards the Th2 system. So how do you get an immune system skewed towards Th2? It’s rather complicated…

 

“Modern vaccinations, fear of germs and absession with hygiene are depriving the immune system of the information input upon which it is dependent. This fails to maintain the correct cytokine balance and fine-tune T-cell regulation, and may lead to increased incidences of allergies and autoimmune diseases.” (Immunology Today, 1998, Vol 19, No 3 pg 113)

 

Just how much do medical people know about cytokines. Prior to the above article, Medical knowledge could be summarised by”

 

“cytokine modulation of immunity generated by vaccines has only been addressed in a very simple manner so far, and few studies have been carried out where the response has been fully characterized…Redirection of the immune response following immunization appears to be a fundamental problem which has to be overcome with some present, as well as future vaccines. Studies in which this concept is being assessed are in their infancy” Pg 112, “Modern Vaccinology”, By Edouard Kurstak, Pub. 1994.

 

To be precise, the only things they had looked at was the “end-product” i.e. antibodies, but there was a realisation that vaccines “redirected” the immune system. In other words, vaccines produce a different immunity to disease. Immunology Today gets more specific:

 

“Vaccination replaces recovery from infections with a rather different type of immunological stimulus. This can have unexpected effects. In the measles system, both vaccination and the infection itself have profound and long-lasting effects on the immune system, but these effects are not the same.”

 

“For example, recovery from natural measles infection reduces the incidence of atopy, and of allergic reactions to house dust mite to half the incidence seen in vaccinated children, suggesting a systemic and non-specific switch to Th1 activity.”

 

The interesting thing is that this new knowledge comes from another modern vaccine disaster - the Gulf War syndrome. So what relevance does this have to vaccinating babies? The author of this study says:

 

“indeed learning (immunological) is an absolute necessity, and these systems have evolved in the “anticipation” of appropriate inputs provided in an appropriate sequence after birth, and continuing throughout life”

 

The immune system has two “sides”. One is Th1, which is the usual response to diseases caught naturally. A healthy immune system has a “bias” towards Th1. Th2 is the “other” side, and people who have allergies, asthma and disease with an auto-immune origin have what is known as a Th2-skewed immune system. (New England J. Med 1992, Vol 326, No 5, 298-304 was one of the first references, now there are hundreds).

 

When a mother is pregnant, her pregnancy is controlled by cytokines, and requires a predominance of Th2 cytokines in order not to reject the baby. (Acta Paediatra 1997; 86: 916-918) A “Th1 driven” immune system would treat the baby as a graft, thereby miscarrying. Drugs are used to suppress the immune systems of transplant recipients for the same reason.

 

When a baby is born, it’s immune system is initially Th2-skewed, by virtue of the mother’s immune system. The mother’s immune system changes very quickly, and her breastmilk will help to change the baby’s balance, and will also “buffer” and assist in the development of the baby’s immune system.

 

The first years of life if the time when the “difference” between “vaccine” and “natural” immunity is so important, because most diseases promote a Th1 immunity. The portal of entry, and learning pathways teaches and matures the immune system, and helps in the prevention of both allergy-development and auto-immune disease. The “antigen” is processed, with the help of immunological factors in breastmilk and the baby’s cued-in immune system through the mucous membranes and the various “layers” of the immune system, producing an end-point called antibodies.

 

Some recent research which is as yet unpublished (I wonder who would have the guts to publish it) is looking at hundreds of mothers who have abnormally high level of antibodies to measles following vaccination. Their children, who became autistic after the MMR vaccine, are also found to have abnormally high levels of antibodies to Measles. The unsolved puzzles to this question are: Is there an inheritted immuno-dysfunction here? Did the high level of antibodies from the mothers cause the babies to have a catastrophic reaction to the MMR vaccine? What cytokine model are we looking at in the children?

 

The answer is that we don’t know, because no-one will research these issues. Not one vaccine company wants even the remote possibility of corporate suicide if the results show that vaccines do, as thought, damage the basic integrity of the immune system in some people.

 

The medical research that has so far been published, already makes it clear that vaccines can and do skew the immune system towards Th2 system, which is not what we want. Researchers looking at the cytokine balance of Gulf War Vets have found that their cytokine system is Th2 skewed. Right from the start, the soldiers blamed the vaccines they were given, but the medical people didn’t want to know so research centred around that fact that it was “all in their minds” (some doctors still do think that), then looked at a mite-sized sand fly in the middle east called “Phlebotomus papatasi” which can cause leishmaniasis (the Honolulu Advertiser, December 11, 1994, Front page). The next excuse was that an unlicensed drug called pyridostigmine bromide which the US thought would protect against nerve agents that Iraq might use could have done it. But the nail in all those coffins came when it was found that military personnel who had never gone to the middle east and experienced either mites or pyrodostigmine were also showing identical problems. All those tested so far appear to have Th2-skewed immune systems, and the only common factor is the vaccines given to them all. In a medical article discussing this skewing affect it was written:

 

“Indeed, the same effect can occur sporadically in the general population as a result of vaccinations or other Th2-inducing environmental stimuli and infections, and may also account for the frequency of chronic fatigue syndrome.”

 

“Unlike BCG, most of the vaccines that are administered to children are Th2 inducing; furthermore the only adjuvant licenced for use in adults is alum which is a Th2 adjuvant. Pertussis is given to children at the same time as other vaccines in order to exploit its adjuvant effect, but this is also Th2 inducing. The effects of these vaccines are mediated largely through neutralizing antibodies, so Th2 responses are adequate, but they do not provide a balanced stimulus for Th1 activity” (pg 114)

 

If an end-point is all they look for, it’s all they see. And if they assume that is the be-all and end-all of immunity

 

Interesting Kim. You know, I am already a big believer in the Hygeine Hypothesis...and your information jives with that. So, the TH1/TH2 argument that would be a logical reason for delaying vaccines until after the first year. Or, I wonder if there are ways to skew the things back to the TH1 side when vaccines are given to a younger baby?

 

I have also heard about giving probiotics to a baby to help prevent allergies. What do you think of that? And of course not raising your child in an overly sterile environment makes sense (I have to tell you, my ped was kind of shocked when I told her 11 years ago, that my infant dd slept on the same bed with us AND 3 cats, and the dogs (well at least not on the bed) were about 1 foot away on the floor! he he)

 

Do you think this "skew" is the same as the "temporary immunosuppression" (usually thought to last 2 weeks) that some peole talk about? I think the "temporary immunosuppression" is more well-known in the Veterinary community. For this reason, vets want to space vaccines at least 3 weeks apart. If you give 1 vaccine (eg Distemper), and then another 1 week later (eg Rabies), you are still in the window of "temporary immunosuppression" and it is thought that body won't respond effectively to the 2nd vaccine (Rabies). (I'm actually having a hard time searching/googling this topic, maybe I'm putting in the wrong words...but it is something I have heard of.)

 

And, if this temporary immunosuppression is correct, that makes sense to me (in combination with stress-opening the BBB) that it might make a child who is perhaps "carrying" assymptomatic strep (or mycoplasma), the strep/mycoplasma might then have the chance to really take hold and trigger PANDAS.

 

And if there IS a temporary immunosuppresion (and if that is a real problem in these kids developing PANDAS/PANS)...does that mean it actually MIGHT be worse to space vaccines and give them all individually (thus giving the child a LONGER time period where she is immunosuppressed, and muliple "stressors"/trips and pokes)...or is it actually worse (as most seem to think) to just do 4 vaccines at once (so there is only a single 2 week window of immunosuppression, and the TH1/TH2 gets skewed less times)?

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In my heart and soul I believe that my daughter's abhorrent immune response to infectious agents is primarily due to vaccines, the poisonous by-products in them, and the increasing toxin burden planet earth provides these days.

I do not believe 25 or so shots/boosters prior to the age of one year is a wise schedule for any infant. Just my opinion. I very much appreciate the different points of view on this God-send of a forum, for it forces me to be a better mom, to do more research and question, question, question the status-quo. Little ol' Le Roy New York is putting PANS on the map due to the controversy of diagnosis and cause. Whether it turns out to be PANS or not, it's one small step for man and one giant leap for mankind. Those parents, parents on this blog and a few

dedicated open-minded docs are making history as we speak. It will be bittersweet if ever I read an article entitled, "Are too many vaccines causing mental illness?" with the subheading, "researchers have found a link between over-inoculation and failing auto-immunity."

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I just can't take that website seriously (vaxtruth.org)...after the blatent misinformation put up about PANDAS. Perhaps it's unfair to make this judgement, but if she is willing to just put up that c%^&, then what misinformation has she put up about vaccines? That is just where my mind goes...of course everyone is free to make their own conclusions.

 

 

Exactly!!

 

And Ms. Vax Truth (esp. when she speaks as a DAN! professional) is really no better than Dr. Conversion Disorder (of DENT) spouting misinformation about PANDAS on national TV (eg saying it is "exceedingly rare", doesn't happen after age 11, only a strep throat infection will cause it...). In a sense she is almost worse, bc it further confuses parents who turn to her b/c they feel the can't trust mainstream docs (who are also misinformed re PANDAS).

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My intention was not to start a big debate, although I knew it might. I just wanted to share information which I felt helpful and lend support for those who share my opinions. I do have to say that most of us feel PANDAS is under researched. Well, so is the possible vaccine link to our childrens problems, and probably moreso. There is case after case of parents that witnessed their childs decline after a vaccine, can we just discount them? think they are crazy? grasping at straws? NO! that wouldn't be fair, since we have all been there with our ill children. It would be nice if some of the 180 billion dollars made from vaccines could go to research to make sure it is not causing these problems in our children. It seems we can't see the forest for the trees. You can rattle off paper after paper but the fact is 50 yrs ago children didn't have these problems (at least not to this scale)So what has changed??? Environmental toxins, food supply (pesticides, processed foods), EMF, and vaccines. Quite simply put, its probably a combination of all of these.So why aren't we at least doing the research to rule it out???? NONE of us have all the answers, even the "PANDAS experts".I am not saying ALL vax are bad, but we need to look at the additives (which are KNOWN toxins to adults!), what we REALLY need to vax for (dont need a vax for every damn illness), and the schedule of when to give (hep B not necessary in a newborn!) As I previously stated, no immune system is designed to meet all of those illnesses in nature, much less when they are engineered in a laboratory, its just not natural. That doesn't take hours and hours of research and book smarts to figure out. Its common sense really. As I said, "forest for the trees". The answer to our childrens suffering is most likely right in front of our faces. Other countries dont have these issues with Autism on this scale, nor do they have as many vaccines (along with the other factors mentioned previously).

 

This is my opinion and I am entitled to it. DD was first diagnosed with PANDAS, this has become frustrating with a drop in strep ab to normal and still symptoms.. Then lyme/ myco. The vaccine issue tied it all together for me. Luckily, my dd is doing quite well and we have started weaning abx.

 

I dont think Marcella ever claimed to be a PANDAS expert and there was no intention to spread "misinformation". Although it could all be misinformation since no one really has it all figured out. I may have been wrong about her credentials, but that doesn't mean the hours and hours of research she has put in should be discounted. She has suffered with a sick child just as us. I guess her credentials would then put her right here at the level of MOST OF THE MOMS ON HERE with her knowledge; NOT BELOW! A MOM who has taken it upon herself to do the research and consume her LIFE with trying to help others. Just as many on here are considered knowledgable WITHOUT ADVANCED DEGREES, I consider her knowledgable and I have learned from her. I don't think she should be disrespected because her opinions may differ from some of those on here. My conversation about this ends here. Again, this was my opinion not intended to start a debate, but to share and support. I think it helps when a parent that has a child that is doing well shares their thoughts and insights. Thanks for your opinions, but we need to remain respectful and supportive of ALL moms with sick children.

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My intention was not to start a big debate, although I knew it might. I just wanted to share information which I felt helpful and lend support for those who share my opinions. I do have to say that most of us feel PANDAS is under researched. Well, so is the possible vaccine link to our childrens problems, and probably moreso. There is case after case of parents that witnessed their childs decline after a vaccine, can we just discount them? think they are crazy? grasping at straws? NO! that wouldn't be fair, since we have all been there with our ill children. It would be nice if some of the 180 billion dollars made from vaccines could go to research to make sure it is not causing these problems in our children. It seems we can't see the forest for the trees. You can rattle off paper after paper but the fact is 50 yrs ago children didn't have these problems (at least not to this scale)So what has changed??? Environmental toxins, food supply (pesticides, processed foods), EMF, and vaccines. Quite simply put, its probably a combination of all of these.So why aren't we at least doing the research to rule it out???? NONE of us have all the answers, even the "PANDAS experts".I am not saying ALL vax are bad, but we need to look at the additives (which are KNOWN toxins to adults!), what we REALLY need to vax for (dont need a vax for every damn illness), and the schedule of when to give (hep B not necessary in a newborn!) As I previously stated, no immune system is designed to meet all of those illnesses in nature, much less when they are engineered in a laboratory, its just not natural. That doesn't take hours and hours of research and book smarts to figure out. Its common sense really. As I said, "forest for the trees". The answer to our childrens suffering is most likely right in front of our faces. Other countries dont have these issues with Autism on this scale, nor do they have as many vaccines (along with the other factors mentioned previously).

 

This is my opinion and I am entitled to it. DD was first diagnosed with PANDAS, this has become frustrating with a drop in strep ab to normal and still symptoms.. Then lyme/ myco. The vaccine issue tied it all together for me. Luckily, my dd is doing quite well and we have started weaning abx.

 

I dont think Marcella ever claimed to be a PANDAS expert and there was no intention to spread "misinformation". Although it could all be misinformation since no one really has it all figured out. I may have been wrong about her credentials, but that doesn't mean the hours and hours of research she has put in should be discounted. She has suffered with a sick child just as us. I guess her credentials would then put her right here at the level of MOST OF THE MOMS ON HERE with her knowledge; NOT BELOW! A MOM who has taken it upon herself to do the research and consume her LIFE with trying to help others. Just as many on here are considered knowledgable WITHOUT ADVANCED DEGREES, I consider her knowledgable and I have learned from her. I don't think she should be disrespected because her opinions may differ from some of those on here. My conversation about this ends here. Again, this was my opinion not intended to start a debate, but to share and support. I think it helps when a parent that has a child that is doing well shares their thoughts and insights. Thanks for your opinions, but we need to remain respectful and supportive of ALL moms with sick children.

Where has anyone stated that you’re not entitled to your opinion? I understand your good intentions in posting this site, but please understand that this is a public forum in which anyone can respond to what is posted…even if they disagree. Personally, I thought the tone of the posts were fine.

 

Again, in my post, I stated that it makes me discount her other information if she is going to get the basic explanation of PANDAS so completely wrong. This is just my opinion, but it shows a lack of care. Therefore, I don’t think it’s unreasonable to extrapolate that into questioning how much care she has put into the rest of the information provided on her website.

 

Just as an example, if you were reading a science website that had a lot of environmental information, but the scientist who runs the site keeps insisting that the world is flat…how are you going judge the overall quality of the site? It’s an extreme example, but bacteria crossing the BBB…is extreme and like JAG10 stated would get you laughed out of any Doctor’s office.

 

There is also a big difference between a website that puts itself out there as a source of information, a blog, and a discussion forum. An information website has a bigger responsibility to get their fact straight. So, in that regard, she’s not just a mom like me. She is holding her site up as a source of information. PANDAS Network, PANDAS Resource Network, and The PANDAS Foundation sites all have the same level of responsibility.

 

I want to add that I have only ever shared that I don’t believe that vaccines contributed to my daughter’s PANDAS. Never have I discounted anyone else’s story about vaccines.

 

Finally, I believe that pointing out bad information is being supportive to the parents who visit this discussion forum.

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My intention was not to start a big debate, although I knew it might. I just wanted to share information which I felt helpful and lend support for those who share my opinions. I do have to say that most of us feel PANDAS is under researched. Well, so is the possible vaccine link to our childrens problems, and probably moreso. There is case after case of parents that witnessed their childs decline after a vaccine, can we just discount them? think they are crazy? grasping at straws? NO! that wouldn't be fair, since we have all been there with our ill children. It would be nice if some of the 180 billion dollars made from vaccines could go to research to make sure it is not causing these problems in our children. It seems we can't see the forest for the trees. You can rattle off paper after paper but the fact is 50 yrs ago children didn't have these problems (at least not to this scale)So what has changed??? Environmental toxins, food supply (pesticides, processed foods), EMF, and vaccines. Quite simply put, its probably a combination of all of these.So why aren't we at least doing the research to rule it out???? NONE of us have all the answers, even the "PANDAS experts".I am not saying ALL vax are bad, but we need to look at the additives (which are KNOWN toxins to adults!), what we REALLY need to vax for (dont need a vax for every damn illness), and the schedule of when to give (hep B not necessary in a newborn!) As I previously stated, no immune system is designed to meet all of those illnesses in nature, much less when they are engineered in a laboratory, its just not natural. That doesn't take hours and hours of research and book smarts to figure out. Its common sense really. As I said, "forest for the trees". The answer to our childrens suffering is most likely right in front of our faces. Other countries dont have these issues with Autism on this scale, nor do they have as many vaccines (along with the other factors mentioned previously).

 

This is my opinion and I am entitled to it. DD was first diagnosed with PANDAS, this has become frustrating with a drop in strep ab to normal and still symptoms.. Then lyme/ myco. The vaccine issue tied it all together for me. Luckily, my dd is doing quite well and we have started weaning abx.

 

I dont think Marcella ever claimed to be a PANDAS expert and there was no intention to spread "misinformation". Although it could all be misinformation since no one really has it all figured out. I may have been wrong about her credentials, but that doesn't mean the hours and hours of research she has put in should be discounted. She has suffered with a sick child just as us. I guess her credentials would then put her right here at the level of MOST OF THE MOMS ON HERE with her knowledge; NOT BELOW! A MOM who has taken it upon herself to do the research and consume her LIFE with trying to help others. Just as many on here are considered knowledgable WITHOUT ADVANCED DEGREES, I consider her knowledgable and I have learned from her. I don't think she should be disrespected because her opinions may differ from some of those on here. My conversation about this ends here. Again, this was my opinion not intended to start a debate, but to share and support. I think it helps when a parent that has a child that is doing well shares their thoughts and insights. Thanks for your opinions, but we need to remain respectful and supportive of ALL moms with sick children.

Where has anyone stated that you’re not entitled to your opinion? I understand your good intentions in posting this site, but please understand that this is a public forum in which anyone can respond to what is posted…even if they disagree. Personally, I thought the tone of the posts were fine.

 

Again, in my post, I stated that it makes me discount her other information if she is going to get the basic explanation of PANDAS so completely wrong. This is just my opinion, but it shows a lack of care. Therefore, I don’t think it’s unreasonable to extrapolate that into questioning how much care she has put into the rest of the information provided on her website.

 

Just as an example, if you were reading a science website that had a lot of environmental information, but the scientist who runs the site keeps insisting that the world is flat…how are you going judge the overall quality of the site? It’s an extreme example, but bacteria crossing the BBB…is extreme and like JAG10 stated would get you laughed out of any Doctor’s office.

 

There is also a big difference between a website that puts itself out there as a source of information, a blog, and a discussion forum. An information website has a bigger responsibility to get their fact straight. So, in that regard, she’s not just a mom like me. She is holding her site up as a source of information. PANDAS Network, PANDAS Resource Network, and The PANDAS Foundation sites all have the same level of responsibility.

 

I want to add that I have only ever shared that I don’t believe that vaccines contributed to my daughter’s PANDAS. Never have I discounted anyone else’s story about vaccines.

 

Finally, I believe that pointing out bad information is being supportive to the parents who visit this discussion forum.

Sorry, It was Pow Pow -- not JAG10 who said they would be laughed out of a doctor's office if they said bacteria crossed the BBB.

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Nothing that I say is intended to be any kind of medical advice. Anything I say is only intended for discussion purposes!

 

Is this saying that the skewing toward Th2 activity due to vaccines "cheating the immune system of learning its lessons properly" results in limited production of antibodies or over production of antibodies, or both? If both, why? Why do we have kids half of whom produce way too many and half of whom don't produce hardly any antibodies?

 

I think what is most important to understand is that vaccines DO have an effect on the developing immune system that can have long term consequences. As an infant is supposed to be changing back to a TH1 or TH1/TH2 balance, seems we are forcing the TH2 (antibody response). I immediately think of my newborn son being injected with the Hep B vaccine. At that time, it contained thimerosal and aluminum. Hep B posed virtually zero risk to my son at that time. I didn't know it, but I had been tested and was negative. So my baby who had undergone the stress of birth and circumcision was injected with that vaccine for what? Did he have circulating autoantibodies from me that could have entered the cns due to the effects of thim/alum? Did that set the stage for future reactions to various antigens? INSERT BIG SPECULATION ICON

 

If both, why?

 

As older children with many variables we may see differences show up. Do some children learn an immune tolerence, do the antibodies become exhausted, is there an immundeficiency (non antibody producers)? Over producers, well you can make a boat load of antibodies but it doesn't mean they work well, or very few that repond just fine. That is why I'm not a big fan of titer testing anymore. It may be better than nothing, but it really doesn't tell you how someone is going to respond to the real deal. Especially without a challenge.

 

Jag, read this CDC statement regarding the pneumococcal polysaccharide vaccine. Near the end of the article it talks about the need for CONJUGATE VACCINE DEVELOPMENT which they DID develope. It says in children under 2 the antibody responses to the polysaccharide vaccine antigens are poor in this age group.

 

Now read this

 

http://www.cdc.gov/mmwr/preview/mmwrhtml/00047135.htm

 

you will see the GlcNAc that I keep harping about referred to as the dominant group A polysaccharide epitope (not a quote there). Near the end it talks about speculation regarding a change from a T cell independent response to T cell dependent response. I really didn't want to get into that right now, but if you've followed this so far maybe you (or anyone)have some ideas there.

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WOW!! Your description of your DD takes my breath away! We are on day 10 of her 1st round of antibiotics. Stumbled on Saving Sammy just 2 weeks ago & that was my A-HA moment!!! Someone out there was describing what I was seeing in my bright, outgoing, comedic DD!! But how you describe her rapid downword spiral, well, I couldn't describe it better for us :( She had a possessed look - - SO SAD & SCARY! Just knew something bigger than OCD was taking hold of my DD!! I felt her slipping away :( I am seriously wondering if she will need IVIG... Seeing some improvement on abx but OH I want my DD back!! Thank you for sharing about flumist. August 2011 was my DD 1st dose of flumist & her spiral started shortly after...hmmmmm

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Hi Kim- This is an interesting discussion; I wish I understood the fundamentals better so I could contribute some educated speculation. I mean, I still don't understand how one produces mass quantities of antibodies and is immune deficient at the same time.

But what you are thinking is that these early, numerous vaccinations could interrupt the necessary training that the baby's immune system needs to encounter so that the Th2 activity does not become persistently dominant?

I'm not sure what I would do if I could go back in time, which we obviously can't. This is all so complex and honestly, I would estimate generously 90% of parents could not figure this out on their own and determine their own vaccine protocol. I would not have the confidence that I was coming to the right conclusions. I'd probably throw my hands up and say "Give her the same 10 shots I got in the same order at the same ages" and cross my fingers. Of course then I'd probably worry that maybe those 10 really were harmful but it isn't evident until the next generation. On the other hand, would anyone be as sure in the decision not to vaccinate at all if that same philosophy was dominant and there was no "herd immunity"? You can torture yourself all night long like this. I don't want to beat myself or anyone else up about what is already done. I just want to make smart choices now and do whatever is possible to correct what can possibly be corrected.

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There is also a big difference between a website that puts itself out there as a source of information, a blog, and a discussion forum. An information website has a bigger responsibility to get their fact straight. So, in that regard, she’s not just a mom like me. She is holding her site up as a source of information. PANDAS Network, PANDAS Resource Network, and The PANDAS Foundation sites all have the same level of responsibility.

 

 

Exactly, and the fact that she worked as a professional in the field (DAN practice)treating PANDAS kids makes it worse. At least Beth Maloney says stuff like "I am not a doctor" and Beth is quite clearly talking about HER personal experiences with her son. So, if Beth gets a medical fact wrong, well it's sort of excuseable b/c Beth states very clearly that she's a lawyer, and medicine is not her area of professional experise. Ms. Piper-Terry really goes beyond that because she blogs from the perspective of a practitioner, having treated other people's kids with PANDAS/Autism, while making her recommendations (like her stance against long term antibiotics in PANDAS kids). She SHOULD be held to a higher standard.

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