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pr40

vaccines mmr, varicella -- your experience

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So, should we vaccinete or not? ds is due for a buster for mmr and varicella.

did you have any adverse effects if you did these?

any other advice is welcome.

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I think this topic will generate a LOT of interest. Many of us are struggling to keep our kids healthy and out of PANDAS flares.

 

Our childrens onset was episodic and gradual until major flare. We were not aware that they had PANDAS until things got bad. That said, when we look back we did not see any PANDAS symptoms until after their first round of vaccines at age 3 (we delayed due to concern of autism.) Furthermore both children got a booster vaccine last summer and exhbited a slow decline into the worst PANDAS flare to date. We are suspicious now of that link, but cannot positively associate. There are so many factors children are exposed to and it is hard to untangle cause and effect. But this is PANDAS - the setbacks are extremely painful - so our policy is to be over cautious.

Edited by dasu

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So, should we vaccinete or not? ds is due for a buster for mmr and varicella.

did you have any adverse effects if you did these?

any other advice is welcome.

 

Before making any decision, I would have titers drawn. Our kiddo's (13yrs old) titers are over 10 times higher than they should be and she had only one shot of each at 12 and 15 months of age. We have been on medication for almost 18 months to lower two of the four titers you are speaking about because her PANDAS immuno believes they are problematic. Getting titers done, you may find you are not in need of boosters after all.

Edited by mayzoo

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I like Mayzoo's suggestion for having titers drawn first; great idea, and if I'd known before we did DS's boosters, I would've done the same.

 

Frankly, except for the "optional" things like chicken pox (varicella) and HPV, I probably would vaccinate. But I would stagger the vaccines/boosters and not let the ped corner me into doing them all at once just because that may be more convenient. If it costs me another $25 co-pay to come back 3 weeks later for another shot, so be it.

Edited by MomWithOCDSon

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I agree with having titers drawn. We had our daughter's drawn and her varicella titers were through the roof and much higher than they would have been on a healthy child. She developed shingles on her ear two weeks to the day of receiving her varicella booster. We have a religious exemption in Texas and have those exemptions for both kids. I am hoping that we will continue to be able to keep that exemption with vaccines being a hot topic right now.

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Wow, I really don't know how to answer this.....since you don't get into too many specifics with your kiddos(except what is below in your description) be cautious.

 

I do agree with stretching them out, drawing titers and being proactive. With that said, when presenting an ID Doc and regular pedi about pandas/strep, age 6-7, associated with tics, tremors, mutism, changes in behavior, ODD, OCD, both those doctors asked if we had any adverse reactions to vaccines. Little did we realize that 18 month 1st MMR we had inconsolable crying......which would NOT classify as an adverse event per the CDC.....my gut tells me differently. We realized this from pulling her med records after the pandas pursuit began. More issues worsening after 2nd round of 60month vaccines.

 

We are fully vaxxed up to age 11-12. Not a snowballs chance for the HPV in my girls. I think the live attenuated vaccines have the worst history.

 

I would speak to the administering pedi and ask about it. Explaining their history and asking them for input BEFORE making any decision or appts.

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I agree with checking titers first. Both my kids have PANDAS and we had a difficult situation recently in that my daughter caught chicken pox from someone in her class (she had one vax as a baby, but not the booster), my son (14) also had one vax as a baby, but not the booster. The state stepped in and said that he could not return to school for 2 weeks unless he had the booster immediately or showed immunity. We tested titers and he had no immunity. We made the decision to vax and he had no negative reaction at all... not even a mild flare. I was very relieved, but I knew I was rolling the dice. Every child is different.

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3 weeks post MMR booster, a strep related illness and exposure to a virus our son woke up a different child. He was five years old at the time and is now 11. He has gestational Lyme et al and we feel it was the perfect storm at 5 that triggered his PANS. Thankfully, he now maintains a level of recovery that no one would know he is dealing with chronic illness. Its been a very long haul to get him well and would not vaccinate him while his health is still tentative.

 

Our twins had delayed MMR around 2 years old. By 2 and 1/2 years of age they both had ASD symptoms. Thankfully again due to early medical intervention all those symptoms have resolved for one child and most for the other child. They are now 8 years old and both twins have gestational Lyme et al as well.

 

Like others I would test for titers. However, due to our experience I fall in the camp of NOT vaccinating while undergoing treatment/dealing with chronic illness. We are also very tentative about ever vaccinating even if they are healthy. Thankfully we will most likely qualify for medical exemption in CA. Other children will not be so fortunate and for that I worry.

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DD13 lost obvious speech and motor ability with her first MMR (15 months), likely associated either with an exacerbation of what the LLMD says was the congenital lyme/bart infections that she was carrying or an improper immune response to the vaccine caused by the infections.

 

Oral apraxia is a loss of muscle control in the face and tongue which coincided perfectly with the loss of her other fine/gross motor abilities. She didn't loose cognitive ability at this time and was still obviously capable of reading at 2 years of age as she was able to point to words on a page when queried. This was all highly frustrating for her as the only way she was now able to communicate was to point at something she wanted and either scream or cry. With pretty intensive speech therapy (Prompt Method) which targeted muscle strength and control in the face/tongue, she regained her speech at age 4.

 

Because of this I was hesitant to vaccine in 2008 when she was 7 years old. I had our doctor draw titers, and even though 2 of them were good (I don't remember which), 1 was low. Unfortunately the three vaccines are not even manufactured separately any more. If you need only one you still have to inject 3.

 

It was 1 month after her second MMR vaccination in 2008 (and also an insect bite with a non-EM rash) that she developed Tourette's. Her ADHD and SPD had been pretty much present since birth. Because of the bite I am unable to say that the second vaccine was the cause of her downswing, but intuitively I feel that it was a major component.

 

I have now taken out vaccine exemptions for both of our children (Canadian), although both were pretty much up to date at ages 10 and 14.

Edited by rowingmom

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In hindsight, my son displayed PANS symptoms after his second MMR and varicella at age 5. It lasted about six months. Then he had a flumist in the fall and fell into PANS . Now we know he had Lyme and co. He will be due for DTap and meningococcal vaccines in a year, at age 12. There is no way he is getting vaccinated again. It's really something every parent has to weigh the risks of. I'm not going to risk it.

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rowingmom,

 

Because of this I was hesitant to vaccine in 2008 when she was 7 years old. I had our doctor draw titers, and even though 2 of them were good (I don't remember which), 1 was low. Unfortunately the three vaccines are not even manufactured separately any more. If you need only one you still have to inject 3.

 

are you aware of the Merck lawsuit regarding the mumps portion of the MMR? They have been accused of adding rabbit antibodies to fake efficacy in the 90+ range. Any one who is testing titers should be aware of this and make their physician aware. Funny as they are forcing vaccination for education, they don't seem to think this is a threat and splash it all over the news. Here are a couple of links for that story.

 

http://healthimpactnews.com/2014/judge-lawsuit-against-mercks-mmr-vaccine-fraud-to-continue/
http://philadelphia.legalexaminer.com/fda-prescription-drugs/massive-fraud-in-merck-mmr-vaccine-testing/

 

For anyone with a child due for a meningococcal vaccine, please be aware that the multidose vial of Menomune still contains 25 mcg mercury per dose. This is the vaccine for A/C/Y/W-135 strains. The newer B strain is a separate vaccine (which deserves a thread of it's own).

Package inserts can be found here.

http://www.immunize.org/packageinserts/pi_meningococcal.asp

 

pr40,

 

Have you already made a decision on the other vaccines that are on the schedule for 4-6 year olds? 5th dose DTaP, 4th dose polio and influenza? http://www.cdc.gov/vaccines/schedules/downloads/child/0-18yrs-child-combined-schedule.pdf

 

If you do decide to get the MMR and varicella, you might want to think of doing them separately. There is a combo shot, but you can get a separate MMR and the varicella and space them which is the way I would personally go, if I were going to vax. I think (you will have to check this in the insert) that the amt of antigen in the stand alone varicella is lower than in the combo shot (ProQuad).

 

Since there has been some discussion of HLA types here, I have a few things saved. The Hep B vaccine response in relationship to celiac caught my eye.

 

http://www.ncbi.nlm.nih.gov/pubmed/18519462
Gluten intake interferes with the humoral immune response to recombinant hepatitis B vaccine in patients with celiac disease.

 

http://www.ncbi.nlm.nih.gov/pubmed/14572581 (excerpt)
AIM:

Human leucocyte antigen (HLA) system plays an essential role in the human immune system activity and the expression of some specific HLA antigens could modify the immune response to vaccinations. Celiac disease is included among the diseases associated to specific HLA profiles, principally characterized by the expression of the HLA DQ2 antigen
Celiac disease has a strong association with a particular HLA genotype of DQ2

http://www.ncbi.nlm.nih.gov/pubmed/17629515?dopt=Abstract&holding=npg
A structural and immunological basis for the role of human leukocyte antigen DQ8 in celiac disease.

 

Here is something on HLA-DR4

 

http://www.smartvax.com/index.php?option=com_content&view=article&id=145:potential-genetic-marker-for-susceptibility-to-vaccine-injury
HLA-DR4: A Potential Genetic Marker for Adverse Event Risk in Response to Vaccination

Edited by kim

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Thanks Kim. We've done 23 and me testing. I don't see any of these for DS. His doctor drew blood for HLA testing last week. She told me she's been having success getting it covered by insurance.

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I agree with having titers drawn. We had our daughter's drawn and her varicella titers were through the roof and much higher than they would have been on a healthy child. She developed shingles on her ear two weeks to the day of receiving her varicella booster. We have a religious exemption in Texas and have those exemptions for both kids. I am hoping that we will continue to be able to keep that exemption with vaccines being a hot topic right now.

Deb can you tell me how high were your daughters titers we had the titers done on our 5 year old they seemed high and after review my sons neuro immunologist is sending them to rheumotology and not sure why! Waiting for doctors to give us an explaination.

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I agree with having titers drawn. We had our daughter's drawn and her varicella titers were through the roof and much higher than they would have been on a healthy child. She developed shingles on her ear two weeks to the day of receiving her varicella booster. We have a religious exemption in Texas and have those exemptions for both kids. I am hoping that we will continue to be able to keep that exemption with vaccines being a hot topic right now.

Deb can you tell me how high were your daughters titers we had the titers done on our 5 year old they seemed high and after review my sons neuro immunologist is sending them to rheumotology and not sure why! Waiting for doctors to give us an explaination.

 

 

 

 

I am not Deb obviously, but our kiddos varicella is sky high too. Varicella immune is considered >134. Our kiddos was 1113. Our immuno did not refer us to a rheumatologist,

Edited by mayzoo

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