Vaccines

[thereishope]

I saw on the news last night that there will be a swine flu vaccine available by Oct. There's also rumor that the government will make a flu vaccine and swine flu vaccine mandatory, no exceptions. I can see them doing this for school age chilldren. My anxiety is raising since my son's 6 year checkup will be in early Oct and I know I will have to defend my decision for no flu shot or swine flu shot. I am still not sure what to do about all other vaccines.

 

Does anyone know what vacines are "acceptable" for PANDAS kids vs ones to definitely to avoid? All I know is to avoid chicken pox and flu. Do you think it's ok for siblings in the same house to get a reg flu shot? I know not to do Flu mist.

[colleenrn]

This is only my opinion, but I feel that once you know your child has PANDAS, any vaccine would be dangerous for them. I know there is also the fear that the actual disease could be dangerous for PANDAS children, but I am more afraid of the vaccines. In 2008, three of my children had pertussis (whooping cough) and chicken pox and made it through with flying colors.

 

I have been following the swine flu vaccine closely and think that they will try to make it mandatory, but I am pretty sure they won't be able to do that. If they make it mandatory for school without any opt out clause, I have already decided that I will keep my children home and have to homeschool them until the flu is gone or summer comers around again. I have not made this decision lightly.

 

I also think that any vaccine that is a "live vaccine" is even more dangerous (chicken pox and MMR, FluMist, small pox). The swine flu should be a killed virus, not live.

 

I am very eager to hear what others think.

Colleen

[P_Mom]

dr.K told us...."no viral vaccines" for my kids. I personally will not vaccinate at all.......I have seen first hand the damage it can do. I also know of many Moms whose PANDAS children had severe episodes from vaccines.

 

Regarding the flu shot and the "Swine FlU" shot..........

 

the annual flu shot is hit or miss...they do not even know the strain of flu that will hit for the winter when they make the vaccine....probably more than half of the time, your child gets the flu shot and is not even protected from the particular strain that hits. The media is going to run wild with the swine flu thing and scare the crap out of everyone enough for us to all run out to get a shot. I wonder how effective and safe it even is. But, they will make LOTS of money off it with people allowing the media to scare them enough. Remember the whole West Nile virus scare? People were afraid to go outside in the summer because of what the media portrayed. Does anyone personally know anyone who got West Nile? According to the media, it was everywhere. After looking into it...I found out that the chances of getting it were VERY remote...even if bitten multiple times by mosquitoes...also, if you did happen to get it...it was generally a mild illness. The media doesn't tell you that.

 

Well, just my feelings here. And, there is no one who can make me give my child these shots. All these "mandatory" shots aren't even mandatory. There are many avenues to avoid them, there are always exceptions even when they try to make you believe otherwise. All I did for my 5 year old to avoid his "mandatory" K shots was tell his pediatrition I didn't want them for medical reasons...he said no problem and wrote up a slip for the school. That is all it took...no questions asked. They just tell you that you will then have to pull your child from class if there is an outbreak in something.

 

I am not sure about the question about siblings getting flu shots....the PANDAS child having exposure to a close contact that will have a fresh virus of "something" going on in them...well, PERHAPS it could cause a small episode? Don't know. We never get the flu shot here....my son is almost 10 and never got it....we have never had a problem with the flu either...go figure.

 

Kelly

[Ellen]

My son's PANDAS became much worse two years ago after Chicken Pox and Hep A vaccines which he received during a time when his environmental allergies were acting up. I remember asking the pediatrician if it was okay for him to have the shots together while his allergies were troublesome that summer, and she assured me that it was fine. Within two weeks after the vaccines we saw a huge explosion of symptoms which involved not just a return of tics and OCD but also bizarre spacing out episodes that lasted for minutes at a time, hyperactivity, pacing, major sleep problems, an inability to do homework or focus (he was previously an A student who never missed an assignment), and eventually screaming episodes and rage attacks. After two years and numerous treatments and interventions including plasma exchange, he has made some great progress but he still has many issues and I do blame those vaccines. Now, after much reading and talking to medical experts, I have learned that children with PANDAS can have exacerbations following vaccines and the two most commonly seen associations are the chicken pox and hepatitis vaccines. I was also told by one doctor that children with PANDAS should not have vaccines but that I would not find that anywhere in writing. I so wish I had this information before I let Simon have those vaccines. Even though I believe Chicken Pox and Hepatitis vaccines may be the worst ones for kids with PANDAS, I think all vaccines including flu shots pose a risk and it is a decision that should be carefully thought out and discussed with a doctor who is very knowledgeable about PANDAS. I personally would not agree to any vaccine for a PANDAS kid even if it becomes a legal requirement, and if I were you, I would check about the laws in your state as far as what you need to do to get an exemption.If you do decide to vaccinate, never do more than one at a time and never when your child has allergies or a cold or any other immune system issue going on at the time. Any vaccine including a flu shot can overwhelm the immune system, and it is my personal belief that it is not worth the risk. My husband and I made choice to refuse vaccines for Simon since this happened, and we have also stopped vaccines for his younger brother who does not have PANDAS but could share the genetic vulnerability. I know this is a very controversial issue, but I feel I must speak out to possibly spare other parents from going through the nightmare our family has experienced. I hope this helps.

 

Ellen

 

I saw on the news last night that there will be a swine flu vaccine available by Oct. There's also rumor that the government will make a flu vaccine and swine flu vaccine mandatory, no exceptions. I can see them doing this for school age chilldren. My anxiety is raising since my son's 6 year checkup will be in early Oct and I know I will have to defend my decision for no flu shot or swine flu shot. I am still not sure what to do about all other vaccines.

 

Does anyone know what vacines are "acceptable" for PANDAS kids vs ones to definitely to avoid? All I know is to avoid chicken pox and flu. Do you think it's ok for siblings in the same house to get a reg flu shot? I know not to do Flu mist.

[thereishope]

The idea of making the swine flu mandatory is different. From what I've read, they would give no exceptions, not even religious. I know you can opt out of other vaccines, but it sounds like this would be very strict. Part of me doesn't think that they would be able to pull off making it absolutely mandatory, but it still scares me.

 

Here's a link to one of the stories...

http://salsa.democracyinaction.org/o/568/c...paign_KEY=27275

 

As for my other kids, they have had strep and appear to not have PANDAS. I watched them like a hawk. My theory is to go ahead and vaccinate them w/ the normal boosters and POSSIBLY get them a flu shot. But I am staying away from the swine flu shot. That way, in a round about way, I am lessening the likelyhood of brinigng things into the house, and thus making my PANDAS child sick. If that makes sense.

 

I haven't made any real decisions on the siblings.

[ShaesMom]

Our Immuno Doc told us that we should never give a vaccine with a "live virus" such as the flu mist and that no one in the family should receive the flu mist either. He did recommend that everyone other than her receive the flu shot though. I have gotten the flu shot annually and swear by it but that is my opinion. I am currently undecided on the swine flu vaccine--leaning towards not getting one though.

[colleenrn]

My oldest child was fully vaccinated, except for the last MMR booster. My three youngest have received the polio vaccine only.

 

My fully vaccinated child has FAR worse PANDAS than my other three. I have always believed, without question, the difference is b/c of the vaccines. I truly believe this is the reason and that is why I won't vaccinate my other three.

 

Colleen

[Guest asaxon]

I saw on the news last night that there will be a swine flu vaccine available by Oct. There's also rumor that the government will make a flu vaccine and swine flu vaccine mandatory, no exceptions. I can see them doing this for school age chilldren. My anxiety is raising since my son's 6 year checkup will be in early Oct and I know I will have to defend my decision for no flu shot or swine flu shot. I am still not sure what to do about all other vaccines.

 

Does anyone know what vacines are "acceptable" for PANDAS kids vs ones to definitely to avoid? All I know is to avoid chicken pox and flu. Do you think it's ok for siblings in the same house to get a reg flu shot? I know not to do Flu mist.

 

Vaccines artificially stimulate the immune system to create antibodies that target a particular bacteria or virus, and PANDAS is almost certainly an autoimmune disorder. So, I personally would tend to avoid all vaccines, unless an immunologist very familiar with the current PANDAS research (particularly Dr. Cunningham's research) convinced me that the vaccine was worthwhile based on a realistic assessment of the risks of contracting the disease being vaccinated against, and was not an unnecessary risk to my PANDAS child.

 

-asaxon

[kim]

I'm terrified to think what may happen to our kids (and even our adult population in regards to two or possibly 3 flu vaccines along with Pneumococcal vaccine etc.) IF they end up getting a regular flu vaccine, two doses of the H1N1, HPV. menningitis, etc. I'm talking about kids with no known autoimmune conditions, not to mention ones with known problems! Another HUGE concern of mine is the possibility that squalene might be used as an adjuvant in some of these vaccines (more on that below). I was looking at some of the clinical trails planned for H1N1 and have to notice the EXCLUSIONS as usual......Also notice that an allergy to thimerosal/mercury (and this is for a pediatric trial) is listed.

 

http://clinicaltrials.gov/show/NCT00944073

 

Exclusion Criteria:

 

Have a known allergy to eggs or other components of the vaccine (including gelatin, formaldehyde, octoxinol, thimerosal and chicken protein).

Have a positive urine or serum pregnancy test within 24 hours prior to vaccination or are breastfeeding.

Have immunosuppression as a result of an underlying illness or treatment, or use of anticancer chemotherapy or radiation therapy (cytotoxic) within the preceding 36 months.

Have an active neoplastic disease or a history of any hematologic malignancy.

Have long term use of glucocorticoids including oral, parenteral or high-dose inhaled steroids (> 800 mcg/day of beclomethasone dipropionate or equivalent) within the preceding 6 months. (Nasal and topical steroids are allowed.)

Have a diagnosis of schizophrenia, bipolar disease, or other major psychiatric diagnosis including major depression.

Have been hospitalized for psychiatric illness, history of suicide attempt, or confinement for danger to self or others.

Are receiving any psychiatric drugs (aripiprazole, clozapine, ziprasidone, haloperidol, molindone, loxapine, thioridazine, thiothixene, pimozide, fluphenazine, risperidone, mesoridazine, quetiapine, trifluoperazine, chlorprothixene, chlorpromazine, perphenazine, trifluopromazine, olanzapine, carbamazepine, divalproex sodium, lithium carbonate or lithium citrate) or any drugs for treatment of depression.

Have a history of receiving immunoglobulin or other blood product within the 3 months prior to vaccination in this study.

Received an experimental agent (vaccine, drug, biologic, device, blood product, or medication) within 1 month prior to vaccination in this study or expect to receive an experimental agent during this study (prior to the Day 201 follow-up call - 180 days after the second vaccination).

Have received any live licensed vaccines within 4 weeks or inactivated licensed vaccines within 2 weeks prior to vaccination in this study or plan receipt of such vaccines within 21 days following the second vaccination.

 

and....... bolding mine (oops for some reason, I can't use the bold or quote feature. This next paragraph would be bolded if I could!!!!!!!!

 

Have an acute or chronic medical condition that, in the opinion of the investigator, would render vaccination unsafe, or would interfere with the evaluation of responses. (This includes, but is not limited to, known cardiac disease, chronic liver disease, significant renal disease, unstable or progressive neurological disorders, diabetes mellitus, autoimmune disorders and transplant recipients.)

Have a history of severe reactions following previous immunization with influenza virus vaccines.

Have an acute illness, including an axillary temperature greater than 100 degrees Fahrenheit or an oral temperature greater than or equal to 101 degrees Fahrenheit, within 1 week of vaccination

 

More clinical trails can be found here: http://www.clinicaltrials.gov/ct2/results?term=H1n1

Notice how many times you see the phrase "healthy adults/ healthy children"

This headline makes my hair stand on end from that page. Also note how many people are involved in the trials, the time frame of noted adverse reactions. Some of them won't be completed until well after they plan to start injecting this into the masses!

 

*Trial to Assess Safety, Tolerability, and Immunogenicity of Influenza Virus Vaccine, Trivalent, Types A & B, Live Cold-Adapted (FluMist) and Measles, Mumps, Rubella, and Varicella Vaccines Administered Concurrently to Healthy Children*

 

SQUALENE

 

http://anthraxvaccine.blogspot.com/

 

Two new adjuvants being prepared for a pandemic flu vaccine (ASO3 and MF59) contain "oil in water" emulsions. The oil is squalene, which is a cholesterol precursor. However, when injected, squalene may cause arthritis or autoimmune effects. The US government recently promised to purchase 119 million doses of ASO3 and MF59, made by Glaxo-Smith Kline and Novartis, for new pandemic flu vaccines.

 

Who is

Meryl Nass, MD

Diplomate, American Board of Internal Medicine

 

http://docs.google.com/Doc?docid=ac3k73cqj...xb3g6&hl=en

 

* ►July 23, 2009 - U.S. has bought 195 million doses of H1N1 vaccine - Reuters - "The U.S. Health and Human Services Department has also contracted for 120 million doses of adjuvant, a compound to stretch the number of doses of vaccine needed, the department's Dr. Robin Robinson told a meeting of Food and Drug Administration advisers."

 

Such an excellent resource!!!!!!!!

http://www.vaccinationnews.com/

 

From recent headlines on this page

 

* ►July 26, 2009 - Drug firms dodge swine flu liability - The Scotsman - "The UK government has been forced to accept legal liability for the swine flu vaccine amid concerns it could trigger life-threatening side-effects among the population at large. Ministers have taken on all the risk for the 60 million doses they have ordered from GlaxoSmithKline and the Baxter group, after both firms said they would refuse to produce it unless legally protected."

[thereishope]

Thank you for posting this! I live in Cincinnati, where one of the hospitals doing the swine flu vaccine trials is being done at the Children's Hospital. On the news, locals are calling the hospital begging them to include thier children in the trials. I just don't understand that.

 

 

 

 

I'm terrified to think what may happen to our kids (and even our adult population in regards to two or possibly 3 flu vaccines along with Pneumococcal vaccine etc.) IF they end up getting a regular flu vaccine, two doses of the H1N1, HPV. menningitis, etc. I'm talking about kids with no known autoimmune conditions, not to mention ones with known problems! Another HUGE concern of mine is the possibility that squalene might be used as an adjuvant in some of these vaccines (more on that below). I was looking at some of the clinical trails planned for H1N1 and have to notice the EXCLUSIONS as usual......Also notice that an allergy to thimerosal/mercury (and this is for a pediatric trial) is listed.

 

http://clinicaltrials.gov/show/NCT00944073

 

Exclusion Criteria:

 

Have a known allergy to eggs or other components of the vaccine (including gelatin, formaldehyde, octoxinol, thimerosal and chicken protein).

Have a positive urine or serum pregnancy test within 24 hours prior to vaccination or are breastfeeding.

Have immunosuppression as a result of an underlying illness or treatment, or use of anticancer chemotherapy or radiation therapy (cytotoxic) within the preceding 36 months.

Have an active neoplastic disease or a history of any hematologic malignancy.

Have long term use of glucocorticoids including oral, parenteral or high-dose inhaled steroids (> 800 mcg/day of beclomethasone dipropionate or equivalent) within the preceding 6 months. (Nasal and topical steroids are allowed.)

Have a diagnosis of schizophrenia, bipolar disease, or other major psychiatric diagnosis including major depression.

Have been hospitalized for psychiatric illness, history of suicide attempt, or confinement for danger to self or others.

Are receiving any psychiatric drugs (aripiprazole, clozapine, ziprasidone, haloperidol, molindone, loxapine, thioridazine, thiothixene, pimozide, fluphenazine, risperidone, mesoridazine, quetiapine, trifluoperazine, chlorprothixene, chlorpromazine, perphenazine, trifluopromazine, olanzapine, carbamazepine, divalproex sodium, lithium carbonate or lithium citrate) or any drugs for treatment of depression.

Have a history of receiving immunoglobulin or other blood product within the 3 months prior to vaccination in this study.

Received an experimental agent (vaccine, drug, biologic, device, blood product, or medication) within 1 month prior to vaccination in this study or expect to receive an experimental agent during this study (prior to the Day 201 follow-up call - 180 days after the second vaccination).

Have received any live licensed vaccines within 4 weeks or inactivated licensed vaccines within 2 weeks prior to vaccination in this study or plan receipt of such vaccines within 21 days following the second vaccination.

 

and....... bolding mine (oops for some reason, I can't use the bold or quote feature. This next paragraph would be bolded if I could!!!!!!!!

 

Have an acute or chronic medical condition that, in the opinion of the investigator, would render vaccination unsafe, or would interfere with the evaluation of responses. (This includes, but is not limited to, known cardiac disease, chronic liver disease, significant renal disease, unstable or progressive neurological disorders, diabetes mellitus, autoimmune disorders and transplant recipients.)

Have a history of severe reactions following previous immunization with influenza virus vaccines.

Have an acute illness, including an axillary temperature greater than 100 degrees Fahrenheit or an oral temperature greater than or equal to 101 degrees Fahrenheit, within 1 week of vaccination

 

More clinical trails can be found here: http://www.clinicaltrials.gov/ct2/results?term=H1n1

Notice how many times you see the phrase "healthy adults/ healthy children"

This headline makes my hair stand on end from that page. Also note how many people are involved in the trials, the time frame of noted adverse reactions. Some of them won't be completed until well after they plan to start injecting this into the masses!

 

*Trial to Assess Safety, Tolerability, and Immunogenicity of Influenza Virus Vaccine, Trivalent, Types A & B, Live Cold-Adapted (FluMist) and Measles, Mumps, Rubella, and Varicella Vaccines Administered Concurrently to Healthy Children*

 

SQUALENE

 

http://anthraxvaccine.blogspot.com/

 

Two new adjuvants being prepared for a pandemic flu vaccine (ASO3 and MF59) contain "oil in water" emulsions. The oil is squalene, which is a cholesterol precursor. However, when injected, squalene may cause arthritis or autoimmune effects. The US government recently promised to purchase 119 million doses of ASO3 and MF59, made by Glaxo-Smith Kline and Novartis, for new pandemic flu vaccines.

 

Who is

Meryl Nass, MD

Diplomate, American Board of Internal Medicine

 

http://docs.google.com/Doc?docid=ac3k73cqj...xb3g6&hl=en

 

* ►July 23, 2009 - U.S. has bought 195 million doses of H1N1 vaccine - Reuters - "The U.S. Health and Human Services Department has also contracted for 120 million doses of adjuvant, a compound to stretch the number of doses of vaccine needed, the department's Dr. Robin Robinson told a meeting of Food and Drug Administration advisers."

 

Such an excellent resource!!!!!!!!

http://www.vaccinationnews.com/

 

From recent headlines on this page

 

* ►July 26, 2009 - Drug firms dodge swine flu liability - The Scotsman - "The UK government has been forced to accept legal liability for the swine flu vaccine amid concerns it could trigger life-threatening side-effects among the population at large. Ministers have taken on all the risk for the 60 million doses they have ordered from GlaxoSmithKline and the Baxter group, after both firms said they would refuse to produce it unless legally protected."

[Suzan]

This topic freaks me out. dd 7 is current on her vaccines. dd6 is not. She still needs the second chicken pox vaccine and the mumps. But since you can't get just the mumps, she's due the MMR. I've seen dd7 have tourette like symptoms while on Tamiflu. There is no way I want my kids to have this flu shot. Our ped is not one to allow for medical exemptions. Will the autoimmune angle keep them from being on the manditory list for the flu shot?

 

Susan

[bronxmom2]

I have a 15 month old baby I have not vaccinated because I am convinced they were the underlying problem with my older, PANDAS child... I am still wondering, should I hold my ground and refuse to vaccinate?

 

About the flu vaccine... I cannot imagine how they could make a vaccine mandatory for every child in the country. That just seems impossible, not to mention ridiculous. I can tell you that would not go over well here in NYC. Many many many people would refuse-- and this is in NYC where the flu danger is probably the greatest.

[Guest asaxon]

This topic freaks me out. dd 7 is current on her vaccines. dd6 is not. She still needs the second chicken pox vaccine and the mumps. But since you can't get just the mumps, she's due the MMR. I've seen dd7 have tourette like symptoms while on Tamiflu. There is no way I want my kids to have this flu shot. Our ped is not one to allow for medical exemptions. Will the autoimmune angle keep them from being on the manditory list for the flu shot?

 

Susan

 

Susan, If your pediatrician is not on board with PANDAS, you should hire one who is. But in any case, with the exception of West Virginia and Mississippi, a parent can decline to vaccinate his child for religious reasons and, in some states, for "philosophical" reasons as well. What state do you live in?

 

-asaxon

[Suzan]

Susan, If your pediatrician is not on board with PANDAS, you should hire one who is. But in any case, with the exception of West Virginia and Mississippi, a parent can decline to vaccinate his child for religious reasons and, in some states, for "philosophical" reasons as well. What state do you live in?

 

-asaxon

 

He is on board with PANDAS, but newly, and he is pretty anti-vaccine, but doing things like spacing them out, giving one at a time, making sure you aren't sick at all...... maybe it will just take a while to work on him.... NC has a religious waiver that I may have to do but that makes me so nervous since I'm basically lying, but of course for my daughter's health I would lie.....

 

Susan

[thereishope]

I'm confused on the chicken pox vaccine. Not all states have a second shot. I live in OH, & its never been brought up for my 8 year old yet.I know that is one I will not give again.

 

Here's a link about which states allow exemptions for which reasons.

http://www.nvic.org/vaccine-laws.aspx