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  • pandas-cover-cropped.pngYour Child Has Changed; Should You Consider PANDAS?

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Priscilla

PANDAS vaccine injury?

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Well I haven't been here for a while. My dd is almost 10 and doing quite well. We are weaing abx at this time and holding steady. Daily epsom baths have been great!! Anyway,I don't want to ramble but I feel I have been enlightened and want to share. Quick review: DD had "quirks"since about 1 1/2 yrs, on and off. More severe by 6 and some tics started on and off. Shortly after 8th bday we had a gradual, then quick and severe spiral downward. OCD, phobias, defiance, "posessed look", tics, movement disorder, dilated pupil.... you name it, we had it. Diagnosis PANDAS, dramatic improvement with abx but not sustained. On to 4 HD ivig. Still improving but not enough. Then got a pos for lyme and mycoplasma. Added another abx, more improvement. Has been doing great for a while but still on abx. Now weaning down. Vocal tics start whenver abx decreased but has disapppeared with the epsome baths. Suspect yeast detox. Anyway, the leroy girls got me researching again and I came across vaxtruth.org. Many of you may have been there. I first read the article PANDAS caused by vaccine injury, now I am hooked. This makes sooooo much sense. I reviewed my dd medical records and realized first psych symptoms started within months of 1st MMR, but the immune issues started prior with ear infections, fevers, pneumonia, asthma. ALL BEFORE 2! This would be the immunosuppressive effects of the toxic additives. Flu shots given because of asthma..... made her sicker. Anyway, my point is this is the most sense anything has made. It tells why the BBB has been breeched to allow strep antibodies in...or ANY antibodies, bacteria, virus, spirochete... That is why our kids can flare ANY TIME they are sick, it doesn't need to be strep. So now my focus has changed from infinite abx (which has made me cringe to have her on this long) to support healing of the BBB, which also heals the GI tract. I would suggest visiting the site if you havent already. There is so much good information. I am just a bit saddened to know my uniformed decisions contributed to my dd suffering. I am hopeful though, and my focus has shifted, and this is the first time in her life I have felt in my gut and with all my heart I know what is going on with her. Awareness needs to be raised to help prevent other families from suffering what we have suffered.

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I agree with you. My "fully" vaccinated child has had far worse PANDAS symptoms then my other three unvaccinated children.

If you search the VAERS and look at kids that received Gardasil along with influenza, and/or Adecel (DTap) and Menactra (menningitis). These girls were at the exact age they would be receiving these vaccines. It seems to me the kids that had these vaccines coadministered has by far the worse reactions. They have barely studied if these vaccines are safe to give together and if you search the literature you will find articles that say, "Coadministration of Gardasil or cervarix with Menactra and Adecel (throw in influenza too) MAY be safe. They don't say, "has been determined safe", But MAY be safe. I still think environmental toxins could play some part b/c apparently so many people in that town suffer from many different weird ailments, but I think vaccines along with strep/myco could be it.

 

Colleen

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My both, previously 100% healthy kids, with previous "normal" reactions to strep, came down with strep/ pandas about a month after receiving the flu mist (ugh- I know- I was so naive then).

 

I don't necessarily attribute it as a cause, but the thought is always with me.

 

No more vaccines for now. The ONLY one I will consider in the future is for meningitis- but I haven't looked into it at all.

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Well I haven't been here for a while. My dd is almost 10 and doing quite well. We are weaing abx at this time and holding steady. Daily epsom baths have been great!! Anyway,I don't want to ramble but I feel I have been enlightened and want to share. Quick review: DD had "quirks"since about 1 1/2 yrs, on and off. More severe by 6 and some tics started on and off. Shortly after 8th bday we had a gradual, then quick and severe spiral downward. OCD, phobias, defiance, "posessed look", tics, movement disorder, dilated pupil.... you name it, we had it. Diagnosis PANDAS, dramatic improvement with abx but not sustained. On to 4 HD ivig. Still improving but not enough. Then got a pos for lyme and mycoplasma. Added another abx, more improvement. Has been doing great for a while but still on abx. Now weaning down. Vocal tics start whenver abx decreased but has disapppeared with the epsome baths. Suspect yeast detox. Anyway, the leroy girls got me researching again and I came across vaxtruth.org. Many of you may have been there. I first read the article PANDAS caused by vaccine injury, now I am hooked. This makes sooooo much sense. I reviewed my dd medical records and realized first psych symptoms started within months of 1st MMR, but the immune issues started prior with ear infections, fevers, pneumonia, asthma. ALL BEFORE 2! This would be the immunosuppressive effects of the toxic additives. Flu shots given because of asthma..... made her sicker. Anyway, my point is this is the most sense anything has made. It tells why the BBB has been breeched to allow strep antibodies in...or ANY antibodies, bacteria, virus, spirochete... That is why our kids can flare ANY TIME they are sick, it doesn't need to be strep. So now my focus has changed from infinite abx (which has made me cringe to have her on this long) to support healing of the BBB, which also heals the GI tract. I would suggest visiting the site if you havent already. There is so much good information. I am just a bit saddened to know my uniformed decisions contributed to my dd suffering. I am hopeful though, and my focus has shifted, and this is the first time in her life I have felt in my gut and with all my heart I know what is going on with her. Awareness needs to be raised to help prevent other families from suffering what we have suffered.

 

Have you found information on how to help heal the BBB? We are working on the GI tract now, along with supplements to boost the immune system (transfer factor, cat's claw etc.). DD lost her speech 2 weeks after the 15 month MMR vaccine, and it took 4 years of speech therapy to get it back - the doctor said it had nothing to do with the vaccine. I think you are right on. I don't think abx alone will help her, the immune system needs to start working properly again.

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I agree - Flumist may have been a big part of our problems as well. DS had strep in oct 08, a flumist in nov 08 this is when things started cookin' so to speak and when our DS first excerbation occured. Wish I would have known then what I know now. His second MAJOR excerbation occurred starting Nov 10' after another Flumist. Jan 2011 he was diagnosed with PANDAS. NO MORE FLUMIST for sure!

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I have always wondered if vax caused both my boys PANDAS symptoms. My oldest ds at 14 months old would bang his head constantly on me or walls or the floor, etc. Then he had his 2nd MMR and chicken pox vax at 17 months. At 18 months is when his first tics appeared out of no where. The OCD also started along with the tics. He was a perfectly normal baby and once he started getting vaxed at 2 months old is when all his illnesses and allergies started. Now his is almost 12 years old. Still has PANDAS/TS symptoms but is very healthy other than allergies. I have 5 dc and all of them were perfectly healthy babies at birth and once they got vaxed at 2months started having colds, allergies, ear infections. I have vaxed my 10 months old at 2, 4, and 6 months but I don't think i'm going to get him his MMR and chicken pox. I really do think that all these vax are messing up our dc's immune systems. Of course try to tell the pedi that and look at you like your a one eyed monster.

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As I sit here and read this, I am in shock. I have had two docs---1 ped and 1 Infectious disease doc ask me point blank if my dd had bad reaction to a vaccine. I can only wonder as I am not sure. Have not done too much backtracking since trying to get our dd's well. As for future vaccines, it is a definite no. Thanks for this info.

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I have been in contact with the creator of vaxtruth.org. She is a wealth of knowledge as she has experienced it with her own daugther, and she is I believe a neuropyschiatrist and has worked with many patients in a DAN practice. She expressed that the same co factors/nutrients needed to balance GI tract will also support the BBB. Her advice is to get immune system balanced first. I am just getting into this, but It is like a revelation.. it makes more sense than anything thus far. I look at our childrens problems today ranging from ADD to Severe autism as one spectrum, with my "PANDAS" child falling somewhere in the middle. Certainly if you can put all children together that suffer from all these disorders.. and the cause is vaccine injury, you would have some pretty staggering numbers. In my reading enviromental factors can absolutely contribute to the degree of injury, but we should not be poisoning our children from the day they are born. And the sheer defiance of the mainstream medical community to even look deeper into the issue is disgusting. So many children and families are losing their ENTIRE LIVES to this. uggggg sorry I am so upset by this, because it is PREVENTABLE! I will update when I learn more, meanwhile, I really encourage going to the site www.vaxtruth.org and reading thru her articles. Thanks

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I HATE HATE HATE !!!! myself for getting her most of her vacs at the same time

she HATED going to the Doc so much for her shots that I thought I would doing her a favor

by getting them all at the same time her ped said oh we do it all the time...

STUPID!!!!

 

Tracie

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I am suffering from guilt myself. I have been looking at my precious girl feeling so much sorrow for the pain my decisions have caused. I will NEVER be bullied into, or underinformed about any medical decisions I make for her again. I am a RN now, but I wasn't at the time. I know first hand how "human" drs are. You MUST inform yourself and base your healthcare decisions on that, not on a Dr opinion. They are taught wrong. There is a great divide even among us RNs. Many of us wont dare take a vaccine. There is so much overmedicating, overdiagnosing and I see the consequences all the time. I had a gut feeling about the vax when she was getting them. I knew there was something wrong with them just injecting my baby with so many at once. I always wondered how they would tell which one she reacted to if she had a severe reaction. I pulled away from that doc, and went to a talk on vax by one of the Dr Sears. I decided to continue, but I spaced them out more (wish I would have opted out of several of them now). The flu shot is an absolute no no since my dd got influenza (tested pos on rapid test) 24 hrs after it.... coincidence, I think not. Happens WAY too often. Even to many of the health care workers that receive them. I had a wonderful man (and Neuro PA) explain it in the best way. There is no time in nature where a person will be exposed to all of those diseases at the same time... that would overload and confuse ANY immune system. Much less an immature/ rapidly developing immune system of a newborn. Then you add in toxic compounds and its bound to poison those innocent little babies. We must work past the guilt, get our children as well as possible, and educate/promote awareness about it so other children/families don't suffer the same fate.

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My DS19 who we now know had PANS since at least 1st grade (and I highly suspect since the MMR which he had an allergic reaction to, and possibly longer than that), had his first major episode (that we identified) at 15. He became suicidal, and ended up in a hospital. He had just had the flu and 2nd chicken pox vaccine together. The next time he became suicidal (after being sick with something...don't remember what, specifically), we had already figured out the possible connection, and Dr. K. put him immediately on abx. The suicidal ideations were gone within hours. Same thing the next time!

 

This family is now vaccine free (except DH, who keeps insisting on getting the flu vaccine, but I told him in no uncertain terms that he is absolutely not allowed to get any live vaccines of any sort.)

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I guess I wanted to post to help some of you lessen your "mommy" guilt. My ds has PANS, but I only gave him the polio vaccination after he was 2 years old. My dd has PANS as well, and received more vaccinations since 2 months old, but is less effected than her brother. So, that leaves lots of questions, are our kids prone genetically? Poor immune systems? Prone to BBB issues? I myself have an auto immune issue, and I also have a compound MTHFR mutation. To make things worse I married a MTHFR mutant! So, of course we passed that on to our kids. So this helps keep the confusion of PANS alive!

Edited by demeter

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I have been in contact with the creator of vaxtruth.org. She is a wealth of knowledge as she has experienced it with her own daugther, and she is I believe a neuropyschiatrist and has worked with many patients in a DAN practice.

 

Hmmm. I looked at the website. The creator (Marcella) is NOT a neuropsychiatrist (no medical degree). She does have a MS in psychology.

 

I was looking at this blog she wrote in regards to the Le Roy girls http://vaxtruth.org/2012/01/the-leroy-twelve-is-now-fifteen-students-set-to-see-pandas-doctor-today-are-vaccines-involved/

 

She seems to have a key misunderstanding about PANDAS...she keeps writing about bacterial and viral infection gaining access to the brain (eg. "Bacterial and viral infections do not gain access to the brain unless the blood brain barrier is damaged." and in a related blog "I have complete confidence that Dr. Triffiletti will be able to tell the parents of The LeRoy Twelve exactly which infectious bacteria has invaded their children’s brains..." and "Bacteria are larger than viruses. If bacteria can get through the holes created in the BBB..." and "PANDAS has been identified as the result of an autoimmune attack on particular brain structures as a result of bacteria that crosses the BBB." ) I get the impression (am I reading it wrong?) that she thinks the BACTERIA itself (eg. strep)actually enters the brain in PANDAS. There is NO MENTION of antibodies, no mention of molecular mimicry.

 

It kind of makes me nervous that somebody who is supposedly an "expert" (treats children with PANDAS and has a child with PANDAS, blogs about PANDAS) is missing out on this really important concept! (What else is she missing out on? Certainly I'm not going to spend lots more time examining her website...)

 

If anybody is going to quibble with me, saying "well, we don't know, maybe the strep DOES enter the brain"...don't forget the mouse models. (To quote Scientific American) "Then they purify the antibodies from those mice, inject them in another mouse that never had strep, and that mouse gets the neuropsychiatric symptoms, too. That shows it's the antibodies doing the damage." We have really good evidence the antibodies cross the BBB. There's really nothing to show that Strep itself crosses the BBB. Plus, if it were the STREP in the brain itself, then Plasmapheresis wouldn't work (since it just removes the anti-bodies, it doesn't suck strep out of the brain.)

 

She's also pretty heavy-handed, anti-long term antibiotics. And seems convinced that vaccines are the PRIMARY cause of PANDAS (okay folks, remember, those mice didn't get ANY vaccines).

 

Now, I am not going to argue that vaccines (and even the STRESS of the vaccines, esp. in a small child) aren't going to cause problems or trigger an exacerbation ONCE THE WHEELS OF PANDAS ARE SET IN MOTION. But she is taking it to the next level. (NOTE: I am talking about PANDAS, I don't have enough information to really speak in terms of Autism...but this is the PANDAS/PITANDS section of the forum, and my child isn't autistic, so I'm not speaking to that).

 

I guess you could accuse me of being a stickler for getting one's science correct (to the best of our ability). That is why I also have issues with Beth Maloney (eg "ASO is THE test for PANDAS"). I think it's okay for a NEWBIE to be getting these concepts wrong. By the time someone is a self-proclaimed expert (writing books, making your own website or organization), well, it's time to get your facts straight.

 

Okay, call me mean...

 

But, I really hate to see these wonderful caring intelligent parents (you guys) beating themselves up over having given early childhood vaccines. Honestly, if I could turn back time (11-12 years), I would STILL give my dd's her baby/childhood vaccines (without Tylenol of course). I probably wouldn't do any extra vaccines (eg flu shots). The thing I would have done ABSOLUTELY differently, is every time my child came in with a FEVER or Vomiting or was otherwise SICK (including strange behavior), I would have demanded a strep test. To me, that is the real cause of my dd's PANDAS, not vaccines. My dd did NOT receive ONE single strep test at ANY of her sick visits. EVERY single FEVER was presumed to be viral (by multiple doctors). Even when she came in with a classic early PANDAS sign (frequent urination) which preceded a FEVER by 3 days, she didn't receive a strep test. I have not idea how many times (or years) she had chronic untreated strep. It took my dh threatening the hospital staff (while my dd at age 7 was in the hospital for acute food refusal/severe OCD) to get our first strep test ("gee, her throat doesn't look sore"), which turned out to POSITIVE (as was her sister's).

 

I know others may disagree, but I can not honestly say, that my dd's PANDAS was in any way percipitated by her vaccinations. Will I vaccinate her now (Whooping cough, HPV) for non-critical vaccines...NO. Did I vaccinate her for H1N1 (nope!--but when she actually got H1N1 from disneyland exposure it resulted in a pretty "nice" exacerbation--would the vaccine have been any better or worse? who knows). But that is something else. That's me not wanting her exposed to triggers while she's healing. I completely agree that a child who already has PANDAS should be extremely leary of vaccines and that vaccines can cause problems in that situation. But, that is not the same as saying, it was the vaccines that caused it all in the first place. To me that's Strep (or even Mycoplasma or Lyme for those with those diagnoses). Period.

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I would not call you mean, EAMOM , just balanced. That is has been evidenced in every single post I have read that you have written! (and I think I may have read them all ;)

Also, thank you for pointing out that misinformation about PANDAS (or anything) does nothing to help anyone. In fact, it may make other well-meaning people get a potential PANDAS diagnosis ignored. IF- for example- my family doctor knows nothing about PANDAS- and I go in there and say, "my kid has sudden onset OCD/tics and I think she has strep in her brain!"- I would be hustled out in a second. Strep in the brain? My kid would be dead or at least ICU-worthy. If the doc does not know and the parent goes in so badly misinformed, FORGET IT.

We are a family of positive rapid and cultures and Negative ASO's..... and positive response to pex, IVIG and steroids!

 

I do not see any evidence of vax causing this- my girls were affected at age 10 &1/2- normal shots for both, but only one had chicken pox shot (the other got the pox!) I will however definitely slow down and question the vaccinations of my littlest - especially after reading the article kim posted about anti-phospholipids and antibodies triggered by immunizations.

Thanks, EAmom!

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