Hierge Posted January 3, 2011 Report Share Posted January 3, 2011 (edited) I was reading a post where a vaccine caused PANDAS to come back in a "cured" child. I am now concerned about Flu shots. What's the general feeling about giving PANDAS diagnosed kids flu shots? I am inclined to not risk them due to low effacacy and other obvious reasons. (Update) If you are a parent of a child with PANDAS with non-custodial parental rights... take notice. Apparently, after writing this post, I found out that Blake's mom took "cured" daughter as of 12/01/10 to get her flu shot on 12/18. Symptoms are now back. I specifically asked Dr. L about this and seem to remember she said no to flu shots. Mom says she has an email from Dr. L which says it's OK to have flu shot. I'm so upset right now. She gained 20 lbs and seemed to be doing so well. I spent four years and fights with her mother to get this dealt with. Edited January 4, 2011 by Hierge Link to comment Share on other sites More sharing options...
thereishope Posted January 3, 2011 Report Share Posted January 3, 2011 We will pass on flu shots from now on. Not only for my PANDAS child, but the entire family. Link to comment Share on other sites More sharing options...
DebC Posted January 3, 2011 Report Share Posted January 3, 2011 I was reading a post where a vaccine caused PANDAS to come back in a "cured" child. I am now concerned about Flu shots. What's the general feeling about giving PANDAS diagnosed kids flu shots? I am inclined to not risk them due to low effacacy and other obvious reasons. Our 10 year old PANDAS daughter was in remission a year ago this past October when we gave her Flumist. She had a return of some symptoms (anger and obsessive cleaning) which took several months to clear. After much discussion and thought, we have decided to discontinue all vaccines for her. Link to comment Share on other sites More sharing options...
P_Mom Posted January 3, 2011 Report Share Posted January 3, 2011 We do, too. Pass. We actually pass on all shots now. Link to comment Share on other sites More sharing options...
thenmama Posted January 3, 2011 Report Share Posted January 3, 2011 (edited) xx Edited March 26, 2013 by thenmama Link to comment Share on other sites More sharing options...
nicklemama Posted January 3, 2011 Report Share Posted January 3, 2011 The FluMist set my DS's PANDAS in motion last Oct 09. He was sick and starting up the PANDAS symptoms two days after the flu mist. NEVER again. Cindy Link to comment Share on other sites More sharing options...
Hierge Posted January 3, 2011 Author Report Share Posted January 3, 2011 Holy guacamole!! I suspected that this might be a bugaboo, but perhaps we may have a causative factor here? Maybe these friggin shots are causing many more cases of PANDAS than we know. What if they were the primary factor? Link to comment Share on other sites More sharing options...
thereishope Posted January 3, 2011 Report Share Posted January 3, 2011 With PANDAS and PITAND, once the original trigger (whatever it may be) opens the Pandora's box, other things that stimulate the immune system may make symptoms resurface. Immunizations stimulate the immune system. There is a chance that some who saw their first known exacerbation post vaccination actually already experienced a mild PANDAS PITAND episode and it went undiagnosed. However, the flu shot has caused a good number of cases of Narcolepsy in Australia in the past year. Narcolepsy is autoimmune as well. Mom w/OCD son has posted before that Narcolepsy patients have high strep titers, so there is a similarity. So, one cannot dismiss the idea that a flu shot can perhaps start the PITAND cycle in some kids. I also believe that just because the flu shot or other immmunization were uneventful before, it doesn't mean it will be the case every time. It's a big decision. Link to comment Share on other sites More sharing options...
kimballot Posted January 3, 2011 Report Share Posted January 3, 2011 We've never done flu shots... but my son did have a raging exacerbation that started with h1n1 last year. I don't know if the shot would have been better or worse. My kids are fully vaccinated for all required vaccines and I am glad I did not know about PANDAS when I had to make those decisions. I never did the optional ones, though, and giving a shot to avoid the flu never appealed to me. Link to comment Share on other sites More sharing options...
P_Mom Posted January 3, 2011 Report Share Posted January 3, 2011 (edited) I also believe that just because the flu shot or other immmunization were uneventful before, it doesn't mean it will be the case every time. It's a big decision. This is absolutely true. My son (older son) never reacted to any of his vaccines prior to his sudden onset of stuttering post Kindergarten shots.......and he had received numerous vaccines before reacting. Edited January 3, 2011 by P.Mom Link to comment Share on other sites More sharing options...
nicklemama Posted January 3, 2011 Report Share Posted January 3, 2011 Of course, we don't know for certain and never will, but I believe the FluMist was the causative factor. My DS7 has never had a diagnosed case of strep. I never even suspected him of having strep. He has normal ASO and DNase titers. Link to comment Share on other sites More sharing options...
Williams_Mom Posted January 3, 2011 Report Share Posted January 3, 2011 My son (11 yo) was supposed to have his well-kid shots early this Fall - as well as the flu shot/mist. I asked Dr. L about it (he had the H1N1 flu last Fall) and she said no to all of them. I am happy to hold off for now. Link to comment Share on other sites More sharing options...
adkmom Posted January 4, 2011 Report Share Posted January 4, 2011 We're done too! In retrospect my DS4 had some symptoms prior but went into full blown exacerbation right after the flu mist! His twin brother had it has well. Never, ever again! He was diagnosed with PANDAS about 1 month later. I'm convinced it's what threw him over the edge. When meeting with Dr. B, he said it was the worst thing that could have happened to him. (getting the shot). He said "please, no more shots for him, ever!" Link to comment Share on other sites More sharing options...
Stephanie2 Posted January 4, 2011 Report Share Posted January 4, 2011 Holy guacamole!! I suspected that this might be a bugaboo, but perhaps we may have a causative factor here? Maybe these friggin shots are causing many more cases of PANDAS than we know. What if they were the primary factor? I'm inclined to think that they are a major factor from the start. Both of my boys reacted to several vaccines, worst one being the DTaP which stole my 2yo's speech and started him down the path of autism. We got him back, though (still working on speech). I'm not antivaccine in general, but we are completely done. I even kept my 6yo home the day they did flumist in school b/c I didn't want him to be exposed passively. Link to comment Share on other sites More sharing options...
Hierge Posted January 4, 2011 Author Report Share Posted January 4, 2011 Funny topic! I took my younger son to an Infectious Disease doctor last month for sinus issues that have lasted for over 4 months. Told her about the whole PANDA story with my older son and my fear of him getting it too. She insisted that I get both of my son's the flu shots. When I told her no, it was like I was the worst Mom in the world! Why wouldn't you get a flu shot she said. You're doing way more harm by not getting them, I can do it today. I told her no again, I'm not doing it this year. Told her I knew that I was taking a big chance and if they got the flu I would hate myself, but my MOMMY FEELINGS were telling me not to do it this year! Should have seen her face people! Like she couldn't believe I had an opinion... Again, knocking on wood that we miss it this year, and the next and the next. For sinus issues, you might benefit from Neti pot and oil of oregano. People swear by these methods. Link to comment Share on other sites More sharing options...
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