Vaccines and PANDAS

[Mary M]

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!!!!!

 

The worst part for me is that on that fateful day almost a year ago I refused the varicella vaccination for my dd. BUt I accepted the DT as I thought the tetanus component was protective for a child who does sports and falls and gets cuts and scrapes and now I'm reading that tetanus doesn't happen in an open bleeding wound like she'd get in sports. How can we parents know everything at all times!

[thereishope]

I was reading somewhere that religious and conscientious/philosophical technically should be interchangable since many believe God is your conscious. Also, as someone stated, it could be that philosophical is still available but they want parents to ask for the paper.

 

 

 

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.

[PANDASmcnuggetsw/fry/coke]

Mary,

 

Dr K thinks our daughter's autoimmmune issues were lying dormant for many years and that a Hep A vaccine in preparation for our adopted sons coming home from Ethiopia, triggered the severe exacerbation. He too advised no more vaccines. Now that I have laid out all of the dates, I see how our lives have been dramatically changed by this choice to get the Hep A vaccine. We home educate, so don't have to mck with exemptions thankfully.

 

PANDAS McNuggetsw/fry/coke

[BoyIowa]

I have been reading a lot on vaccines and their ties with autoimmune disorders.

 

http://www.naturalnews.com/vaccines.html

 

There may be genetic dispositions for families to have reactions to vaccines. Grandpa has lupus, dad got ITP from taking Malaria pills while in Somalia (so he is told). It is scary stuff. I read that the Amish (who don't vaccinate, don't have autistic kids). Why aren't there studies on this? - Big Pharma companies and Big $$$$.

 

My experience in the past with getting vaccines for my kids has been that if they are sick, they can't get the vaccine that day. My son has PANDAS - he is sick. So, until he is no longer sick - no vaccines!!

 

My daughter is due for a couple vaccines before she starts kindergarten. If I can find a way to prevent her from getting any more vaccines, I'm going to do it. Since my son has had PANDAS, my daughter had 6 strep infections in less than 4 months, 2 sets of tubes, tonsils and adenoids removed, walking pneumonia, constant colds, and now we are testing for allergies. She gets aggressive when she gets sick and if vaccines can trigger what’s in the genes, then I say ‘###### no!’

[airial95]

We still vaccinate our PANDAS kids, but not on the recommended schedule. Our pediatrician as well as our PANDAS doctor (Dr. Murphy), agrees with our approach. The immunologist also checked my son's (my severe case) reactions or whatever to the vaccines that he's had previously and said that he's responding apprpoprtiately - but agreed with our process.

 

We no longer do ANY combo vaccines. If it can't be seperated, we don't do it. Period. And we don't do multiple vaccines on one visit. We wait a minimum of 3 weeks between shots so we can monitor his reaction. We've been doing this for 2 years and haven't had any problems with vaccines so far. The only one he's ever reacted to was the H1N1 - and we got that just prior to dx only because we were taking a family trip to Mexico right at the height of the outbreak so it was recommended. We were in the middle of a pretty bad exacerbation at that time, and the shot just set him off worse (we didn't know we were in an exacerbation at that point however, we were still thinking it was just the "terrible twos").

 

I know it's a different approach than others on here, but I thought I'd share.