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Vaccinations and the non-PANDAS child


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My 4 year old is due for her annual well child check up. I am still undecided about vaccinations. I live in a state where I can take a philosophical exemption. I think I am on the fence about this because my older kids are up to date since PANDAS didn't surface in our family until they were both up to date for kindergarten. Since then, I have opted not to do flu vaccines, second chicken pox, etc for my older kids.

 

What's your opinion on this? Would you opt out of immunizations for the 4 year old, would you just space them out more, would you get antibody tests done to see if the previous ones still show immunity? Would would you do?

 

I'll add that my 4 year did have strep before without any PANDAS symptoms surfacing. However, I do believe we caught the strep very fast. She does not get symptoms. She was only tested for strep because my PANDAS son had strep. That was in March 2009. Her last strep test was in May 2010. Rapid and cuture were negative. She was tested because her non-PANDAS brother exposed and the ped didn't run a culture on him, so we couldn't be sure he didn't have strep.

Edited by Vickie
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The Immunization thing is something I have not even thought about. I guess I need to do some research as to whether we need to be considering stopping them too. Do they cause exacerbations? Trigger PANDAS even? Is that what you are worried about with your youngest...it triggering things for them? Sorry to butt into your post with questions! Hopefully some others will offer some good advice from personal experience!

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Some PANDAS kids do have exacerbations with vaccinations, esp if the child has an active infection or isn't full recovered. I do not plan on doing anymore vaccinations on my older boys (one PANDAS, one not). What my concern is what if she has the predisposition for PANDAS and it just didn't surface the last time she had strep. I'm also wrried about activating an immune system in a girl who has a family history of autommmune disorders and PANDAS in particular. Also, the MMR is one vaccine scheduled. I'm worried about that one. If she did get that one, that one is live, right? Does it shed and would my PANDAS son be exposed? Am I worrying too much? My husband said it's my decision what we do. I don't think you can pick and choose when it comes to declaring an exemption.

Edited by Vickie
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My 4 year old is due for her annual well child check up. I am still undecided about vaccinations. I live in a state where I can take a philosophical exemption. I think I am on the fence about this because my older kids are up to date since PANDAS didn't surface in our family until they were both up to date for kindergarten. Since then, I have opted not to do flu vaccines, second chicken pox, etc for my older kids.

 

What's your opinion on this? Would you opt out of immunizations for the 4 year old, would you just space them out more, would you get antibody tests done to see if the previous ones still show immunity? Would would you do?

 

I'll add that my 4 year did have strep before without any PANDAS symptoms surfacing. However, I do believe we caught the strep very fast. She does not get symptoms. She was only tested for strep because my PANDAS son had strep. That was in March 2009. Her last strep test was in May 2010. Rapid and cuture were negative. She was tested because her non-PANDAS brother exposed and the ped didn't run a culture on him, so we couldn't be sure he didn't have strep.

I just went through this with my 15 year old non PANDAS daughter. I don't know if I did the right thing, but I decided to continue her immunizations, but ONLY immunize in the summer, when she is feeling well, and to allow several weeks between shots. I am hoping I don't regret it. I guess I could regret it either way.

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Vickie --

 

Based largely on Dr. Kenneth Boch's work and hearing him speak passionately on this topic, I would probably do a couple of things. Firstly, I would submit to the vaccines on a slower schedule . . . not packaged, but a single vaccine at a time. Secondly, I wouldn't even enter into the chicken pox or flu vaccines at all, unless your child has other prevailing medical concerns that could turn the flu into pneumonia or something threatening like that.

 

Dr. Boch says he's not "anti-vaccine," he's just for "smart vaccination." So why give an infant, or even a four-year-old, a vaccine for Hepatitis B, a sexually-transmitted disease? And why assault an immature immune system with four or five infectious agents at once, let alone the thimerasol or whatever preservative they're stored in?

 

Honestly, I wish I could turn back the clock on my DS13 and do some of these things over again. Low and slow is my current motto for just about everything, but I can't change what I didn't know back in DS's early years.

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Hi Vickie,

 

This is such a personal decision, so I can only answer based on the information you provided and what I would do if I were in your shoes. Given the fact that there is a history of PANDAS in your family and your DD has had strep (even without getting PANDAS symptoms), I would err on the side of caution. I would definitely get her titers done. You may be having angst over nothing if her titers are high enough. I have checked my DD's titers ever since she was 5 and she has not needed one vaccination since. If, however, she is not immune, then I would look at each vaccination individually. What is the risk of her getting each disease? Can you get the immunization broken out if it is a combined immunization? Certainly space them out and make sure your DD is in perfect health if you do administer any vaccinations. Ken Bock is my DD's primary doctor and he is very wise in what he says in his book.

 

Nancy

 

My 4 year old is due for her annual well child check up. I am still undecided about vaccinations. I live in a state where I can take a philosophical exemption. I think I am on the fence about this because my older kids are up to date since PANDAS didn't surface in our family until they were both up to date for kindergarten. Since then, I have opted not to do flu vaccines, second chicken pox, etc for my older kids.

 

What's your opinion on this? Would you opt out of immunizations for the 4 year old, would you just space them out more, would you get antibody tests done to see if the previous ones still show immunity? Would would you do?

 

I'll add that my 4 year did have strep before without any PANDAS symptoms surfacing. However, I do believe we caught the strep very fast. She does not get symptoms. She was only tested for strep because my PANDAS son had strep. That was in March 2009. Her last strep test was in May 2010. Rapid and cuture were negative. She was tested because her non-PANDAS brother exposed and the ped didn't run a culture on him, so we couldn't be sure he didn't have strep.

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Does your pediatrician also treat your PANDAS son? If he's up to speed on that, I would call your pediatrician and discuss it as well. He may provide other options or alternatives. My non PANDAS daughter just went in for her 4 year visit back in May, and I did go ahead with her shots at that time. I didn't give much thought to it with her to be honest, because we've never had issues.

 

I won't be doing the flu shots with either of them anymore however. We did the H1N1 last fall (because we were taking a trip to Mexico, it was recommended) and it affected my son very badly. We didn't know about his PANDAS yet, but he reacted to the H1N1 with major tantrums and rages, complete flare up of what we now know are his PANDAS symptoms. My kids didn't get the live vaccine then either, since my arthritis drugs compromise my immune system, our pediatrician won't give them the live vaccines if there's an alternative.

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Vickie,

 

I think I could say we would not be on this forum if it had not been for a vaccine on March 30. My daughter probably had PANDAS lying dormant for a while with no symptoms, but a Hep A vacinne has changed our lives dramatically to say the least. We did the Hep A vax for the whole family b/c of our adopting twin 3 year olds from Ethiopia. Dr k says this was the trigger for our dear daughter. The exacerbation was immediate.

 

The choice must be yours of course after weighing the risks and benefits. This was our experience and I wish it could be undone. Unlike many children from Ethiopia, ours did not come home with Hep A.

 

PANDAS McNuggetsw/fry/coke

 

 

 

 

 

 

 

 

 

quote name='Vickie' date='28 July 2010 - 09:26 AM' timestamp='1280323609' post='77293']

My 4 year old is due for her annual well child check up. I am still undecided about vaccinations. I live in a state where I can take a philosophical exemption. I think I am on the fence about this because my older kids are up to date since PANDAS didn't surface in our family until they were both up to date for kindergarten. Since then, I have opted not to do flu vaccines, second chicken pox, etc for my older kids.

 

What's your opinion on this? Would you opt out of immunizations for the 4 year old, would you just space them out more, would you get antibody tests done to see if the previous ones still show immunity? Would would you do?

 

I'll add that my 4 year did have strep before without any PANDAS symptoms surfacing. However, I do believe we caught the strep very fast. She does not get symptoms. She was only tested for strep because my PANDAS son had strep. That was in March 2009. Her last strep test was in May 2010. Rapid and cuture were negative. She was tested because her non-PANDAS brother exposed and the ped didn't run a culture on him, so we couldn't be sure he didn't have strep.

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Hi Vickie-

 

Even when our kids are well- life will never be simple again, will it?

 

I think you are thinking about, what I would, and will do, when vaccines come up again.

 

I would (like you and others said) look at each individual vaccine: is it really needed? if so when? what are the real stats on the illness the vaccine is trying to prevent?

 

I would then decide which ones I thought were important (hopefully with the help of a concerned ped). I would then check for titers if the vaccine is a booster.

 

Then, I think I would go ahead, one vaccine at a time, and only when the child is extremely healthy.

 

I don't even remember what vaccines are for a four year old! Please keep us posted on what you decide and why- as we will all face this challenge!

 

BTW- I would totally advocate any parent of one pandas child, being as vigilant with their other children. There are just so many of us with multiples!

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I have opted not to vaccinate either of my boys b/c they both displayed early signs of autism. But the thing I wanted to mention is that I don't see why you can't "pick and choose" when it comes to exemption. The exemption is something that you get through the state health dept. then you turn it into the school. At your ped's office, you get the shots and they don't have to know anything about what you turn into the school. Are you concerned that the state will compare your shot records to your exemption? If that is the case then I would go get the shot(s) and then go get the exemption. I don't think there has to be any time period between the last shot and the exemption.

 

Just some thoughts...

Some PANDAS kids do have exacerbations with vaccinations, esp if the child has an active infection or isn't full recovered. I do not plan on doing anymore vaccinations on my older boys (one PANDAS, one not). What my concern is what if she has the predisposition for PANDAS and it just didn't surface the last time she had strep. I'm also wrried about activating an immune system in a girl who has a family history of autommmune disorders and PANDAS in particular. Also, the MMR is one vaccine scheduled. I'm worried about that one. If she did get that one, that one is live, right? Does it shed and would my PANDAS son be exposed? Am I worrying too much? My husband said it's my decision what we do. I don't think you can pick and choose when it comes to declaring an exemption.

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Vickie -- and Company!

 

Don't have an opinion, but I do have the same question! -- so I decided to throw my story into this mix.

 

My sons are now 11 and 9, so most of the mandatory vaccinations are behind us. However, I will not allow either boy to receive another vaccination without careful consultation with an expert doctor or doctors whom we truly know and trust. (I plan to ask Dr. K. and Dr. L. about this, but at the moment I'm still waiting to hear back about precisely which Tetanus shot my PANDAS-stricken son should receive, since I've been advised that all vaccinations other than Tetanus are out for him, at least until adulthood).

 

My 11-year-old was stricken in January 2007 (@ his 8th birthday) by what I now know should have been readily recognized as PANDAS, but was not. He suffered a series of infectious illnesses in the fall or 2006 (which were nasty, but came and went, so no blood tests were done) -- then come January, it was like a lightning bolt from @#$%&*! (hallucinations, suicidal ideation, etc.). He was promptly misdiagnosed with early-onset bipolar disorder, struggled for three years (yes, a saw-tooth pattern -- always attributed to bipolar disorder), and finally seemed to be getting better. Then, at his well-child annual check-up in September 2009, he received a flu vaccination, and once again all @#$%&*! broke loose -- even worse this time. He has been incapacitated for nearly a year now. Movement disorders, can't speak, read, write, draw.... It took months and months to find a doctor to listen to us, to look at the overall health history, and to "connect the dots." Ironically, the bipolar diagnosis, which -- considered in context -- should have served as a neurological and immunological clue -- was used by a long series of awful doctors as an excuse to dismiss every word that came out of our mouths, including our suggestions that the flu shot had done something to our child. Why on earth would you listen to anything a family full of crazy, hysterical people has to say?...

 

PANDAS and the immune system and neuroscience in general are all so complex and so incompletely understood, even by the experts. Nevertheless, I figure the "real" experts must be in a better position to answer questions such as this one, so I plan to rely on them to help me make good decision(s).

 

Tenacity

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Thats a very diffiuclt decision. You also don't want to expose a known pandas child to somehting that an unvacianted non-pandas kid might bring home. I live in California. There is a whooping cough outbreak going on right now. Its killed 6 kids this year. The more likely the rest of your community to NOT vaccinate, the more likely you will be exposed.We deciced to get H1N1 for our entire family (except pandas son) because we didn't wnat him to be exposed to any illnesses last year. I've never even had a regular flu shot. But, our daughter is older than pandas son, and has never had any pandas symptoms, so I wasn't even thinking about it setting her off.

 

http://today.msnbc.msn.com/id/38447752/ns/health-infectious_diseases/

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It is a personal choice, and it is a very hard choice.My son had the flu mist October 2009. Two days later he woke up with uncontrollable eye blinks,later came motor tics, OCD and then anxiety. It took me months to put the two together. Our pediatrican suggested that my entire family not receive a flu shot or any type of nasal vaccine. I am not really clear on why this happens so if someone could please chime in that would be great. My pediatrician mentioned his brain working double time?? Does that sound right?

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also want to add that when my son was 4 he received his very last vaccine, polio, which triggered his worst pandas exacerbation yet (not to mention the worst croup attack I have ever witnessed - had to throw both small children in the car at midnight, husband wasn't home, son was barely breathing...drove 80 mph through several residential neighborhoods to get to the ER). took 1.5 years to pull him out, which brings us to now - he is 5.5. I will admit, could have been coincidence, as he did not get a strep test at the time, but that was the shot that put the nail in the coffin of my decision to stop all vaccines for both kids.

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The "whether to vaccinate or not" question is very difficult. I can only share my experience.

 

I fully vaccinated my oldest child, except she did not get her last MMR booster at age 5, nor has she recieved any since (only was due for a DTap and Gardasil at age 11-12). She has hard the most severe of the PANDAS symtoms so far. My opinion is that vaccines played some part in that.

 

My next 3 children have only received the polio vaccine b/c I was so afraid of what I had learned about vaccines and PANDAS. I researched it for years and came to the decision that not vaccinating my children was safer than vaccinating them.

 

My 3 youngest children have all contracted pertussis (whooping cough) and chicken pox. All 3 children did fine with both illnesses and I did not see an exacerbation of PANDAS symptoms with the illnesses.

 

I would be extremely hesitant to give any live vaccine to any child with PANDAS or a sibling of a child with PANDAS. I am very against the varicella vaccine (chicken pox) and the Gardasil vaccine (for HPV). I have seen it make children very sick before, but again, it is such a personal decision for your family.

 

I know it is such a hard decision that we struggle with.

 

Colleen

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