Vaccines and PANDAS

[Mary M]

I was filling out sports physical forms for my dd12 and had to put the last tetanus shot date. I wrote the date, without paying attention and then when I scanned to ensure all the blanks were filled in I realized....she received her DT just before the change (we don't do pertussis since my middle daughter was hospitalized after her DPT as a baby, no Dr could ever could make a causal connection so we just avoided further innoculations of the stuff). She had the DT and got a new script for singulair on the same day-8/21/09. When sudden onset behavior changes occurred, the thought was it was a reaction to the singulair. Dropped the singulair, behaviors waxed and waned and then were unlivable. Ped dx PANDAS. We've had nearly a year of PANDAS now. This is her second PANDAS event (first at age 7.5). IVIG June 14/15 finally starting to see major improvement.

 

Does anyone know of any research that indicates autoimmune dysfunction or BBB breaches to be associated with the DT vaccination? I know I've read about MMR and autism...

 

Should I ponder this or just leave it alone?

Mary

from Michigan

[faith]

Mary,

I've read a little of your dd's history,...just to clarify, when did she have the DT vaccine? and you say her symptoms started 4 years ago? nothing before that ever?

 

I have no doubt that vaccines can contribute, and this one in particular, just my strong hunch from all i've read from parents. my son is due for this right now and I am going to lie down in the street in front of the school buses if they don't accept my exemption letter.....

 

I am inclined to beleive it played a big part in exacerbation of symtoms, wether it is exactly 'PANDAS', not sure, but if a child didn't have signs of pandas before, I do beleive it can definitely cause the nuerological symptoms in 'susceptable' children, especially those who have already exhibited something, however mild... your dd seems to be in the more severe category, with multiple symptoms, including rages? does she have any tics, any vocal tics? even before the vaccine? you say this started at 8, what vaccine did she have at 8, I am under impression this vaccine is due at 11 years old. I am really interested in your experience here and would really like to know more, if you don't mind relaying it, this is something I pay particular interest in.

 

could I ask how you got the DT but not the pertussis part? and how did you get out of that with the school?

 

thanks so much for posting your question and experience. I see your girl seems to be getting better, I do hope it continues....

 

Faith

[forjpj]

Yes, thanks for posting this. I just realized my ds10 is due for his tetanus, and I'm really interested in everyone's experiences. I'm so tired of making decisions like these...sorry needed to vent!

[wornoutmom]

Mary - As you know, my son's severe exacerbation at age 12, a week after receiving 3 vaccines at once (and passing out cold in the doc's office right afterwards). My understanding of vaccines in PANDAS kids is that, like catching an illness, you are starting the immune process to build new antibodies, which (in layman's terms) get confused and start attacking the brain instead of the antigen. To my knowledge there is no research - it is controversial enough in the autism community, but I believe all of the PANDAS docs are against vaccinating a known PANDAS child (someone correct me if I'm wrong). My youngest son, not PANDAS, is due for his 11 year shots this summer, and I am terrified. He has shown some strange symptoms this year (insomnia, lip biting, feeling the need to urinate over and over at night time) following illness, and with all the genetic predisposition and families with several PANDAS kids, I REALLY do not want to risk vaccinating him. Maybe it's PTSD, but I'm terrified of doing something harmful to him. I am VERY curious how you have dealt with this regarding the schools requirement? I was thinking to only let him get the tetnus, but after hearing your connection, I'm not so sure....

[thereishope]

There is actually a book about that vaccine DPT: A Shot in the Dark by Barbara Loe Fisher , founder of the NVIC

 

 

I just got back from my non-PANDAS 4 yr old check up. They wanted to give her the MMR/chicken pox combo vaccine! Uh....NO!!!!!

[Kayanne]

but I believe all of the PANDAS docs are against vaccinating a known PANDAS child (someone correct me if I'm wrong)

 

I don't think that is true...there have been conflicting reports on this forum about what PANDAS docs say about vaccines...even from the same doctor.

 

My guess is that it is more of a case-by-case basis...depending on where your child is in the healing process, and if they have had prior reactions to vaccines. I really think they just don't know, but yes, some kids do get worse with vaccines. For us specifically, I was told that vaccines were okay. I haven't seen any adverse reactions in my 4 children with their vaccines --- but only one has PANDAS.

[mama2alex]

Dr. K has told us absolutely no more vaccines for our son. I don't know what the other PANDAS docs recommend.

 

For anyone who needs it, here's info about vaccine exemptions (which you use for school purposes) from the National Vaccine Information Center (www.nvic.org):

 

Philosophical Exemption

The following 18 states allow exemption to vaccination based on philosophical, personal or conscientiously held beliefs: Arizona, Arkansas, California, Colorado, Idaho, Louisiana, Maine, Michigan, Minnesota, New Mexico, North Dakota, Ohio, Oklahoma, Texas, Utah, Vermont, Washington and Wisconsin.

 

In many of these states, individuals must object to all vaccines, not just a particular vaccine in order to use the philosophical or personal belief exemption. Many state legislators are being urged by federal health officials and medical organizations to revoke this exemption to vaccination. If you are objecting to vaccination based on philosophical or personal conviction, keep an eye on your state legislature as public health officials may seek to amend state laws to eliminate this exemption.

 

Religious Exemption

All states allow a religious exemption to vaccination except Mississippi and West Virginia. The religious exemption is intended for people who hold a sincere religious belief opposing vaccination to the extent that if the state forced vaccination, it would be an infringement on their right to exercise their religious beliefs. Some state laws define religious exemptions broadly to include personal religious beliefs, similar to personal philosophical beliefs. Other states require an individual who claims a religious exemption to be a member of The First Church of Christ, Scientist (Christian Science) or another bonafide religion whose written tenets include prohibition of invasive medical procedures such as vaccination. (This kind of language has been ruled unconstitutional when it has been challenged in state Supreme Courts.) Some laws require a signed affidavit from the pastor or spiritual advisor of the parent exercising religious exemption that affirms the parents' sincere religious belief about vaccination, while others allow the parent to sign a notarized waiver. Prior to registering your child for school, you must check your state law to verify what proof may be needed.

 

Due to differences in state laws, the National Vaccine Information Center does not recommend or provide a prewritten waiver for religious exemption because it may not conform with what is required in your state, and may actually draw attention to your child, and you may be singled out and challenged.

 

If you are challenged, you could end up in litigation brought by your state or county health department to prove your religious beliefs. The religious exemption is granted based on the First Amendment of the Constitution, which is the right to freely exercise your religion. Because citizens are protected under the First Amendment of the United States, a state must have a "compelling State interest" before this right can be taken away. One "compelling State interest" is the spread of communicable diseases. In state court cases which have set precedent on this issue, the freedom to act according to your own religious belief is subject to reasonable regulation with the justification that it must not threaten the welfare of society as a whole.

 

However, parents have successfully obtained religious exemptions to vaccination. The constitutional right to have and exercise personal religious beliefs, whether you are of the Christian, Jewish, Muslim or other faith, can be defended. If you exercise your right to religious exemption, you must be prepared to defend it. It is always best to define your personal religious beliefs opposing vaccination in your own words when you write a letter defending them. If you do belong to a church and take the time to educate the head of your local church about the sincerity of your personal religious beliefs regarding vaccination, obtaining a letter from your pastor, priest, rabbi or other spiritual counselor affirming the sincerity of your religious beliefs may also be advisable.

 

Medical Exemptions

All 50 states allow medical exemption to vaccination. Proof of medical exemption must take the form of a signed statement by a Medical Doctor (M.D.) or Doctor of Osteopathy (D.O.) that the administering of one or more vaccines would be detrimental to the health of an individual. Most doctors follow the AAP and CDC guidelines. Most states do not allow Doctors of Chiropractic (D.C.) to write medical exemptions to vaccination.

 

Some states will accept a private physician's written exemption without question. Other states allow the state health department to review the doctor's exemption and revoke it if health department officials don't think the exemption is justified

[kim]

Should I ponder this or just leave it alone

 

Mary,

 

Read this insert and I think it will answer this question for you.

 

https://www.vaccineshoppe.com/image.cfm?doc_id=5972&image_type=product_pdf

 

Read the incidence of tetanus reported in the highest year they could find (1947.. prior to widespread use of the vaccine)

 

Read the section labeled "nervous system."

 

Read the CONTRAINDICATIONS section

 

A hypersensitivity to thimerosal???? Yea, bet this will jump right to your Doc's mind. Most that I have tried to talk to about this have NO CLUE and act like you're nuts, yet the manufacturer warns about it.

 

Read the statement a little further down that starts with this

IT IS EXTREMELY IMPORTANT WHEN THE CHILD RETURNS FOR THE NEXT DOSE

 

Now, discuss this with your DD Dr. and ask why he/she isn't doing their job, if you aren't questioned concerning the occurrence of ANY SYMPTOMS AND/OR SIGNS OF AN ADVERSE REACTION TO A PREVIOUS DOSE.

Edited August 6, 2010 by kim

[peglem]

Dr. K has told us absolutely no more vaccines for our son. I don't know what the other PANDAS docs recommend.

 

For anyone who needs it, here's info about vaccine exemptions (which you use for school purposes) from the National Vaccine Information Center (www.nvic.org):

 

Philosophical Exemption

The following 18 states allow exemption to vaccination based on philosophical, personal or conscientiously held beliefs: Arizona, Arkansas, California, Colorado, Idaho, Louisiana, Maine, Michigan, Minnesota, New Mexico, North Dakota, Ohio, Oklahoma, Texas, Utah, Vermont, Washington and Wisconsin.

 

In many of these states, individuals must object to all vaccines, not just a particular vaccine in order to use the philosophical or personal belief exemption. Many state legislators are being urged by federal health officials and medical organizations to revoke this exemption to vaccination. If you are objecting to vaccination based on philosophical or personal conviction, keep an eye on your state legislature as public health officials may seek to amend state laws to eliminate this exemption.

 

Religious Exemption

All states allow a religious exemption to vaccination except Mississippi and West Virginia. The religious exemption is intended for people who hold a sincere religious belief opposing vaccination to the extent that if the state forced vaccination, it would be an infringement on their right to exercise their religious beliefs. Some state laws define religious exemptions broadly to include personal religious beliefs, similar to personal philosophical beliefs. Other states require an individual who claims a religious exemption to be a member of The First Church of Christ, Scientist (Christian Science) or another bonafide religion whose written tenets include prohibition of invasive medical procedures such as vaccination. (This kind of language has been ruled unconstitutional when it has been challenged in state Supreme Courts.) Some laws require a signed affidavit from the pastor or spiritual advisor of the parent exercising religious exemption that affirms the parents' sincere religious belief about vaccination, while others allow the parent to sign a notarized waiver. Prior to registering your child for school, you must check your state law to verify what proof may be needed.

 

Due to differences in state laws, the National Vaccine Information Center does not recommend or provide a prewritten waiver for religious exemption because it may not conform with what is required in your state, and may actually draw attention to your child, and you may be singled out and challenged.

 

If you are challenged, you could end up in litigation brought by your state or county health department to prove your religious beliefs. The religious exemption is granted based on the First Amendment of the Constitution, which is the right to freely exercise your religion. Because citizens are protected under the First Amendment of the United States, a state must have a "compelling State interest" before this right can be taken away. One "compelling State interest" is the spread of communicable diseases. In state court cases which have set precedent on this issue, the freedom to act according to your own religious belief is subject to reasonable regulation with the justification that it must not threaten the welfare of society as a whole.

 

However, parents have successfully obtained religious exemptions to vaccination. The constitutional right to have and exercise personal religious beliefs, whether you are of the Christian, Jewish, Muslim or other faith, can be defended. If you exercise your right to religious exemption, you must be prepared to defend it. It is always best to define your personal religious beliefs opposing vaccination in your own words when you write a letter defending them. If you do belong to a church and take the time to educate the head of your local church about the sincerity of your personal religious beliefs regarding vaccination, obtaining a letter from your pastor, priest, rabbi or other spiritual counselor affirming the sincerity of your religious beliefs may also be advisable.

 

Medical Exemptions

All 50 states allow medical exemption to vaccination. Proof of medical exemption must take the form of a signed statement by a Medical Doctor (M.D.) or Doctor of Osteopathy (D.O.) that the administering of one or more vaccines would be detrimental to the health of an individual. Most doctors follow the AAP and CDC guidelines. Most states do not allow Doctors of Chiropractic (D.C.) to write medical exemptions to vaccination.

 

Some states will accept a private physician's written exemption without question. Other states allow the state health department to review the doctor's exemption and revoke it if health department officials don't think the exemption is justified

We live in AZ and since I made the decision to stop vaccinating, have been using the personal philosophical exemption. But the exemption paper that was sent home for this coming school year, does not have the philosophical exemption listed as an option, so I wonder if AZ law has changed. I know things have been getting stricter regarding vaccines here- They now require DDD caseworkers to check vaccine records...I now fear that w/ the federal government getting involved in medical reform, vaccines will soon become federally mandated.

[mama2alex]

We live in AZ and since I made the decision to stop vaccinating, have been using the personal philosophical exemption. But the exemption paper that was sent home for this coming school year, does not have the philosophical exemption listed as an option, so I wonder if AZ law has changed. I know things have been getting stricter regarding vaccines here- They now require DDD caseworkers to check vaccine records...I now fear that w/ the federal government getting involved in medical reform, vaccines will soon become federally mandated.

 

It's really scary that the Federal Government might take away our choice as to whether to vaccinate or not. Maybe they just took it off the paper to discourage parents from using the exemption. Hopefully they didn't change the law! If they did, can you get a doctor's letter?

[dee45]

Mary - As you know, my son's severe exacerbation at age 12, a week after receiving 3 vaccines at once (and passing out cold in the doc's office right afterwards). My understanding of vaccines in PANDAS kids is that, like catching an illness, you are starting the immune process to build new antibodies, which (in layman's terms) get confused and start attacking the brain instead of the antigen. To my knowledge there is no research - it is controversial enough in the autism community, but I believe all of the PANDAS docs are against vaccinating a known PANDAS child (someone correct me if I'm wrong). My youngest son, not PANDAS, is due for his 11 year shots this summer, and I am terrified. He has shown some strange symptoms this year (insomnia, lip biting, feeling the need to urinate over and over at night time) following illness, and with all the genetic predisposition and families with several PANDAS kids, I REALLY do not want to risk vaccinating him. Maybe it's PTSD, but I'm terrified of doing something harmful to him. I am VERY curious how you have dealt with this regarding the schools requirement? I was thinking to only let him get the tetnus, but after hearing your connection, I'm not so sure....

[Mary M]

when did she have the DT vaccine?

 

most recent vaccination was 8-21-09, symptoms occurred within days/weks of that

 

and you say her symptoms started 4 years ago?

 

yes at age 7 and a half

 

nothing before that ever?

 

not that we can determine

 

 

 

your dd seems to be in the more severe category, with multiple symptoms, including rages?

she has many sypmtoms, almost every one documented with the excecption of g-i troubles and hallucinations although she may have had hallucinations durin gher first exacerbation

 

 

does she have any tics,

no distinguishable movement tics presently

 

 

any vocal tics?

 

tons

 

even before the vaccine?

 

no tics before the vaccine

 

 

you say this started at 8, what vaccine did she have at 8,

 

started at 7.5--no vaccine that I can think of at that time, I'll pull her record and look at it again though

 

 

I am under impression this vaccine is due at 11 years old.

she was 11 when she got the vaccine in AUg 09

 

 

 

could I ask how you got the DT but not the pertussis part?

 

I simply asked for it. We've always gotten just DT since my other daughter's reaction. We were led to believe it was just the pertussis part that was problematic and by leaving the pertussis out the shot was safe.

 

 

 

and how did you get out of that with the school?

 

We homeschool but our children go to electives in the public school. I have always provided their immunization record. No one ever questioned it, not in school,not in sports, nothing.

 

I see your girl seems to be getting better, I do hope it continues....

 

 

Thank you, she is improving daily, the IVIg has really seemed to make a difference.

Faith

[Mary M]

Yes, thanks for posting this. I just realized my ds10 is due for his tetanus, and I'm really interested in everyone's experiences. I'm so tired of making decisions like these...sorry needed to vent!

 

I can't think of any reason to get a tetanus shot having now read even more about it. I thought it was so important, especially for this daughter of mine as she is my athlete.

[peglem]

We live in AZ and since I made the decision to stop vaccinating, have been using the personal philosophical exemption. But the exemption paper that was sent home for this coming school year, does not have the philosophical exemption listed as an option, so I wonder if AZ law has changed. I know things have been getting stricter regarding vaccines here- They now require DDD caseworkers to check vaccine records...I now fear that w/ the federal government getting involved in medical reform, vaccines will soon become federally mandated.

 

It's really scary that the Federal Government might take away our choice as to whether to vaccinate or not. Maybe they just took it off the paper to discourage parents from using the exemption. Hopefully they didn't change the law! If they did, can you get a doctor's letter?

I think we're going to go ahead and claim religious exemption (that used to not be on there- it was swapped with philosophical). I'm pretty sure we could get a dr signature, w/ her getting IVIG monthly- but we don't want to be stuck if IVIGs gets discontinued. At this point, her immunologist is willing to continue as long as she is improving and insurance will cover, so not definite.

I tried searching- I couldn't find anything on AZ vaccine policies newer than last year.

I think the federal government will mandate vaccines in order to participate in government funded or subsidized healthcare, on the basis that it will cost taxpayers $$ to treat diseases, instead of preventing them.

[Mary M]

Mary - As you know, my son's severe exacerbation at age 12, a week after receiving 3 vaccines at once (and passing out cold in the doc's office right afterwards). My understanding of vaccines in PANDAS kids is that, like catching an illness, you are starting the immune process to build new antibodies, which (in layman's terms) get confused and start attacking the brain instead of the antigen. To my knowledge there is no research - it is controversial enough in the autism community, but I believe all of the PANDAS docs are against vaccinating a known PANDAS child (someone correct me if I'm wrong). My youngest son, not PANDAS, is due for his 11 year shots this summer, and I am terrified. He has shown some strange symptoms this year (insomnia, lip biting, feeling the need to urinate over and over at night time) following illness, and with all the genetic predisposition and families with several PANDAS kids, I REALLY do not want to risk vaccinating him. Maybe it's PTSD, but I'm terrified of doing something harmful to him. I am VERY curious how you have dealt with this regarding the schools requirement? I was thinking to only let him get the tetnus, but after hearing your connection, I'm not so sure....

Don't do it. Sign the waiver for school. After what you've been through already? We have neve had anyone question that we didn't innoculate the normal full vaccination. And there is a waiver you can sign to forego the vaccine totally.