bws Posted December 11, 2011 Report Share Posted December 11, 2011 So I was reading and listening about "Vaccines the Full Story". They tell you about all the horrors of vaccines, like contamination, adverse reactions like seizures, autism, developmental delays etc etc... One of the known side effects of the DTaP, I believe, is a weakening of the Blood Brain Barrier. Could this be the cause of our troubles? What does the Pandas community believe about immunizations anyway? Link to comment Share on other sites More sharing options...
Kayanne Posted December 11, 2011 Report Share Posted December 11, 2011 So I was reading and listening about "Vaccines the Full Story". They tell you about all the horrors of vaccines, like contamination, adverse reactions like seizures, autism, developmental delays etc etc... One of the known side effects of the DTaP, I believe, is a weakening of the Blood Brain Barrier. Could this be the cause of our troubles? What does the Pandas community believe about immunizations anyway? I can't speak for the "Pandas community", I can only relate my family's experience with vaccines. They have not caused any PANDAS symptoms in my daughter, and I haven't seen any adverse side effects in my other children either. I believe my daughter got PANDAS because she caught the right strain of strep, has a genetic pre-disposition to it (family history of RF), and her strep was not treated properly at first. Link to comment Share on other sites More sharing options...
nicklemama Posted December 11, 2011 Report Share Posted December 11, 2011 (edited) I can only speak from my DS's experience. Flumist triggered his first major exacerbation in 2009. Dr T and Dr K both told me no more vaccines for DS. He'll not get another one until he's an adult and in charge of himself, then he can make his own decisions. Exacerbation occured two days after FluMist. Edited December 11, 2011 by nicklemama Link to comment Share on other sites More sharing options...
dcmom Posted December 11, 2011 Report Share Posted December 11, 2011 I do not blame vaccines for my kid's pandas. (They both DID get the flu mist a little less than three months prior to onset....) BUT- for now, we are pretty much done with vaccines. NO flu shots, NO HPV, no boosters in the forseeable future. Could not take the chance. And- when doing the risk vs reward equation for each vaccination, pandas seems to tip the scales to NOT vaccinating. I am angry because the state that I live in requires SO many vaccinations, and has no philosophical exemption. Also, a letter from a doc about an autoimmune condition is not a valid. I had to take a religious exemption- of which I am not- and I prefer not to lie- but I am forced into it. Gosh- pandas has made me somewhat bitter..... Link to comment Share on other sites More sharing options...
melanie Posted December 11, 2011 Report Share Posted December 11, 2011 We tell the school he has an egg allergy. That's what our md told us to say. Link to comment Share on other sites More sharing options...
airial95 Posted December 12, 2011 Report Share Posted December 12, 2011 We've not seen any reactions to any of the regular vaccines. We did see an issue with the H1N1 vax, but that was prior to knowing he had PANDAS. We no longer do any flu shots, and when we do his other vaccines that are required for school - we do them one at a time, a few weeks apart so we can monitor his reaction. We've done this the last 2 years (3 yo and 4 yo shots) and we've seen no issues. Our son's PANDAS was clearly linked to an impetigo infection and started independently (6 months) from his previous vaccines. Link to comment Share on other sites More sharing options...
EAMom Posted December 13, 2011 Report Share Posted December 13, 2011 So I was reading and listening about "Vaccines the Full Story". They tell you about all the horrors of vaccines, like contamination, adverse reactions like seizures, autism, developmental delays etc etc... One of the known side effects of the DTaP, I believe, is a weakening of the Blood Brain Barrier. Could this be the cause of our troubles? What does the Pandas community believe about immunizations anyway? We haven't done any vaccines since we learned of PANDAS at age 7. Dd's PANDAS symptoms are relatively mild now, but she will have symptoms with non-strep illnesses (no strep for a long time since she's on daily Azith) and recently has even had an excerbation (this fall) of increased tics when her sister got sick with a viral fever. PANDAS dd herself didn't get sick, but obviously her immune system was reacting to the illness in the household (and it wasn't even strep). So, I have every reason to believe she would react to a vaccine as well. I'm just not ready to risk another exacerbation with vaccination. I don't believe vaccines *cause* PANDAS, but once a child *has* PANDAS it makes sense to me that a vaccine can trigger an exacerbation just like a non-strep illness (or exposure to a non-strep illness) can trigger an exacerbation. And, like DCmom said, risk vs. reward does not make vaccines worthwhile for us at this point. Link to comment Share on other sites More sharing options...
EAMom Posted December 13, 2011 Report Share Posted December 13, 2011 We tell the school he has an egg allergy. That's what our md told us to say. Good idea...and hopefully they won't notice that egg salad sandwhich she brings for lunch every day. Link to comment Share on other sites More sharing options...
norcalmom Posted December 14, 2011 Report Share Posted December 14, 2011 I was ready to write a note and check the "against religious beliefs" box but our immunologist wrote a note saying son recently had IVIG - and was therefore fully immune to any such infections through the donor antibodies. Bought me another year (at least)! What is best is to have you kid's titer checked. Most kids make the titer just fine and don't need the booster. At least them you will know - it is a double edged sword, there are alot of kids getting whooping cough right now, and I think an exacerbation would pretty bad from actual whooping cough too - but at least then you will know if you runt he risk of that or not. If your child has a titer in the acceptable range - you know you are in the clear and your doc. would probably write you a note no problem.. Link to comment Share on other sites More sharing options...
kim Posted December 14, 2011 Report Share Posted December 14, 2011 (edited) bws, I have many concerns surrounding the way immunizations could be contributing to aggressive/confused antibodies and I think your question is a good one. We tell the school he has an egg allergy. That's what our md told us to say My question would be whether or not the Dr. was specifically refering to a flu vaccine? The "egg" thing would probably get you out of the flu vax and maybe yellow fever but that would be about it. If a Dr. would tell you that you shouldn't get a hep B vax if you have a known allery to yeast, I might be impressed since it's warned about in the insert, but most don't seem to read them (#4 CONTRADICTIONS http://us.gsk.com/products/assets/us_engerixb.pdf). You can see from this table that the form of yeast is typically s cerevisiae http://www.cdc.gov/vaccines/pubs/pinkbook/downloads/appendices/B/excipient-table-1.pdf Here is a bit from wiki on Saccharomyces cerevisiae http://en.wikipedia.org/wiki/Saccharomyces_cerevisiae Antibodies against S. cerevisiae are found in 6070% of patients with Crohn's disease and 1015% of patients with ulcerative colitis. Other names for the organism are: S. cerevisiae short form of the scientific name Brewer's yeast, though other species are also used in brewing Ale yeast Top-fermenting yeast Baker's yeast Budding yeast This species is also the main source of nutritional yeast and yeast extract. Might a prudent Dr. ask about a family history of crohn's/colitis BEFORE injecting a day old infant with this or a teen/adult for that matter? It's been a while since I looked at that research or the significance of it, my point is really the lack of knowledge our medical professionals seem to have when it comes to vaccines. This will take you to some Pubmed info if anyone is interested in this topic http://www.google.com/cse?cx=011897857536713548856%3A3rmdzaobefc&ie=UTF-8&q=Saccharomyces++cerevisiae+crohn%27s&sa=Go#gsc.tab=0&gsc.q=Saccharomyces%20cerevisiae%20crohn's&gsc.page=1 You might be better off telling them that you have an allergy to aluminum, monkey kidney tissue, or neomycin depending on what vax you're trying to dodge (that is assuming that the person injecting the stuff knows anything about it...which I have YET to find in our community). Edited December 14, 2011 by kim Link to comment Share on other sites More sharing options...
kim Posted December 14, 2011 Report Share Posted December 14, 2011 nicklemama, Look at this insert from flumist. Look at 12.3 about 1/3 of the way down the page on the right under the heading Pharmacokinetics Biodistribution http://www.medimmune.com/pdf/products/flumist_pi.pdf 12.3 Pharmacokinetics Biodistribution I would love to see anyone who suspects a problem with flumist ask their Dr. if this rings any alarm bells for them regarding your childs reacton and if they would be willing to sign an exemption for that vax for the child. Was your sons reaction reported? Link to comment Share on other sites More sharing options...
nicklemama Posted December 14, 2011 Report Share Posted December 14, 2011 Geez, I think I could tell them what the medical significance is for the 2.4% of the vax that enters the brain!!!!! Yes, it was reported. I reported it to VAERS. I wouldn't have known to report it to VAERS but a friend is a NICU nurse and she insisted I report it and bugged me for a few weeks until I did. I had no idea what I was dealing w/ back then. Link to comment Share on other sites More sharing options...
Kayanne Posted December 14, 2011 Report Share Posted December 14, 2011 In PA, flu vaccines are still optional. Are they required in other states? Link to comment Share on other sites More sharing options...
nicklemama Posted December 14, 2011 Report Share Posted December 14, 2011 (edited) Not in MI, but I've heard they are in a few other states. We will be seeking a medical exemption for future vax's and if our ped is not willing, I'll make it a religious decision. Whatever it takes. I won't have to cross this bridge, though, for a couple more years. Edited December 14, 2011 by nicklemama Link to comment Share on other sites More sharing options...
JAG10 Posted December 14, 2011 Report Share Posted December 14, 2011 Does anyone know about the meningitis vaccine? If so many of our kids had trouble with the strep pneumonaie vaccine, does that make them more likely to have trouble with the meningitis one? Why are they linked together? Link to comment Share on other sites More sharing options...
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