Vaccines and PANDAS

[thereishope]

I'm curious how PANDAS kids are reacting to vaccines. If your child has received any vaccinations since their PANDAS surfaced, can you let me know your experience with them? Did they have a setback due to the vaccine? Did they do fine?

 

Can you please tell which vaccine the child received?

 

How long after their last PANDAS exacerbation did they receive the vaccine?

 

If they had a setback, how severe or mild was it and how long did it last?

 

If they had a setback, could there have been any other contributing factors?

 

 

Thanks!

[Suzan]

Since I've known about PANDAS, we have had only 1 vaccine. It was the MMR for my 7 yr old. She did not have any reaction to it. That said, I was not looking for reactions to vaccines through a pandas lense all these years so I don't really know.

 

Susan

[DebC]

Our daughter had flu mist this fall and had a mild onset of OCD symptoms. She is still exhibiting some obsessive cleaning, but we can all live with that as it's mild. It will probably dissipate with time. I am guessing that the mist had something to do with it. However, during this time, H1N1 was rampant in school and her brother had it so I'm still not completely positive that this wasn't also triggered by exposure to other illness. It's hard to say. Fall and winter are hard on these kids since their bodies are always fighting off illness. That being said, I probably won't have the mist administered again next year.

 

Her biggest reaction to a vaccine was with the varivax (chickenpox) vaccine. She had not yet been diagnosed with PANDAS at the time. At exactly 14 days post vaccination, she developed shingles on her ear. The blisters were painful and lasted for weeks. They would come and go every several days. We worked our way up the ladder with Merck as they were very interested in this fairly rare reaction. The head of that vaccine went so far as to call and speak with our doctor. There's still a part of me that wonders if this vaccine acted as some sort of a trigger to her immune system, setting her up for her later PANDAS reaction.

[momaine]

My dd had the H1N1 about a week after she started taking Advil which reduced her symtpoms a LOT. (like 80%) That night (13 hours later) she did 3 hours of compulsions with crying and raging, unable to stop. She had not had a night like that since starting Advil. The next day was also difficult but not as bad. By the following day she was back to her normal self with Advil, which is fairly even keeled....with some (but managble) repeating walking/shuffling, doorways, reassurance questions.

 

Angela

 

 

I'm curious how PANDAS kids are reacting to vaccines. If your child has received any vaccinations since their PANDAS surfaced, can you let me know your experience with them? Did they have a setback due to the vaccine? Did they do fine?

 

Can you please tell which vaccine the child received?

 

How long after their last PANDAS exacerbation did they receive the vaccine?

 

If they had a setback, how severe or mild was it and how long did it last?

 

If they had a setback, could there have been any other contributing factors?

 

 

Thanks!

[thereishope]

Just bumping this on the board for those who visit the forum tonight:)

[michele]

My son already had PANDAS symptoms from a positive strep infection that induced tics and behaviors at age 1 (or it could have been the 1 yr old vaccines he had the week prior to the strep which included pneumococal and varivax, but after that his five year old boosters and a flu vaccine set him over the edge. His urinary frequency and compulsions were constant after the shots like touching the ground and getting up on his curled under toes and stepping and meltdowns. Omnicef settled his symptoms down some but he was still ADHD and anxious since and has symptoms of high functioning autism/aspergers. His mercury levels were very high done by the DAN!. He also had alot of heavy metals and yeast in his blood labs and a chemical found in carpet fibers. I think the genetic predisposition for a neuro disorder was there but the shots and strep induced the rest. Needless to say I wonder what it would have been like if we had not done any more shots or had done them one at a time. Anyone here stop the shots or reduce the number of them given at one time?

 

Michele

Just bumping this on the board for those who visit the forum tonight:)

[tantrums]

My son had his fourth MMR in August and this did start for us shortly afterwards. However, he had strep in July (right before this all began here) and H1N1 in October, when it really got bad. So I really can't say if it was the vaccine. I do tend to believe it was the other illnesses and the timing was just bad.

[peglem]

The problem with linking to vaccines is that there are so many variables and in most cases, parents didn't notice vacine proximity- especially if the child was fairly young. I have my suspicions, but nothing I can nail down. But, since this is an immune mediated condition, it makes sense to look at what has been done to the immune system

[Stephanie2]

My son received a polio shot (4 yo at the time) in Jan. and two weeks later he went into a MAJOR pandas episode. Could be coincidence, but between both of my boys showing regressions, we are now a vaccine-free family. The only other contributing factor is that JAN/FEB tends to be a strep season so it could have been coincidental, but he was perfectly fine before the shot...

 

Stephanie

 

I'm curious how PANDAS kids are reacting to vaccines. If your child has received any vaccinations since their PANDAS surfaced, can you let me know your experience with them? Did they have a setback due to the vaccine? Did they do fine?

 

Can you please tell which vaccine the child received?

 

How long after their last PANDAS exacerbation did they receive the vaccine?

 

If they had a setback, how severe or mild was it and how long did it last?

 

If they had a setback, could there have been any other contributing factors?

 

 

Thanks!

[llmusicmom]

I'm curious how PANDAS kids are reacting to vaccines. If your child has received any vaccinations since their PANDAS surfaced, can you let me know your experience with them? Did they have a setback due to the vaccine? Did they do fine?

 

Can you please tell which vaccine the child received?

 

How long after their last PANDAS exacerbation did they receive the vaccine?

 

If they had a setback, how severe or mild was it and how long did it last?

 

If they had a setback, could there have been any other contributing factors?

 

 

Thanks!

 

My daughter had the flu mist and the chickenpox booster in September 08. 2 weeks later she went to the school nurse with a sore throat. 4 weeks later home with a fever. Then every 4-5 weeks through September of this year she was sick with something....1st confirmed strep in March, 2nd in June concurrent with explosion of facial tics and 3rd in August prior to tonsillectomy 9/09. Prior to 9/08, she hadn't been sick since she was 18 months old. Eye blinking was the first thing I noticed, but cannot remember when it started - not sure if prior to vaccines or not, but clearly everything went wrong after the vaccines. Will never get flu vaccine again. She caught the H1N1 in November, but we didn't get the vaccine.

[Kayanne]

I do believe that my dd6 had an earlier unrecognized PANDAS episode around 3 1/2, but I can't pinpoint it to either a vaccine or a strep exposure.

 

Her Birthday is in Feb (yearly shots), and the last two years (prior to this spring because she was in a full blown episode) it seemed that she was more fearful of bees, and not wanting to go outside, but by the beginning of the summer, that seemed to be gone.....Now that I am aware of PANDAS, I feel like maybe, I am reading too much into her history...after all kids go through phases...right?

 

At the end of Oct, she got the flu, without any uptick in PANDAS....based on that (after much stress, and deliberation) we decided to get our kids vaccinated with H1N1. They recieved the first dose on November 19th, and the only thing that has me a little concerned, is it seems like she is slightly losing focus....but not enough to raise any red flags yet...it could be attributed to a few other things too.

 

I actually gave her motrin this morning, just to see if I notice an improvement.

 

~Karen

[PKM]

My son was diagnosed with Sydenham's Chorea about 10 months ago (sometimes we wonder about PANDAS though). Nonetheless he is somewhere on the Sydenham's Chorea/PANDAS spectrum. Right now he is doing very well and he continues to improve as the months pass (just a very long recovery!!).

 

About 6 weeks ago he had his first dose of the H1N1 vaccine (in the arm - not the nasal mist). He did not appear to have any sort of a reaction to the vaccine. He had his booster H1N1 vaccine about 2 weeks ago - again no reaction - no setbacks of any kind (yet). At this time, he continues to slowly progress and get better despite the vaccines.

 

That being said I would not have given him the vaccine if it weren't for his underlying health conditions. Moreover, I have no plans to give him any future vaccines for a very long time (unless we have another pandemic.....).

 

PKM

[zazuk2010]

Hi, my twin boys were fine at their 5th year checkup. They both got the chicken pox vacinaqtion at that time. 5 weeks later one of the boys was diagnosed with PANDAS showing sudden onset of tics and severe OCD. 2 weeks after that his brother started having unbelievable raging tantrums (if you could even call them that). I am convinced that the chicken pox vacine played a role in thier PANDAS. They both tested positive for an unknown and thus untreated strep when symptoms first started. My theory is that they were geniticly pre-disposed to having an auto immune reaction to a virus./bacterial infection and the live chicken pox vacine in coordination with the strep and their genes brought it all on.

 

They have not recieved any vacinations since then (8 months ago) and as far as I am concerned they will never get another one.

 

 

Best, Kari

[harmony]

I'm curious how PANDAS kids are reacting to vaccines. If your child has received any vaccinations since their PANDAS surfaced, can you let me know your experience with them? Did they have a setback due to the vaccine? Did they do fine?

 

Can you please tell which vaccine the child received?

 

How long after their last PANDAS exacerbation did they receive the vaccine?

 

If they had a setback, how severe or mild was it and how long did it last?

 

If they had a setback, could there have been any other contributing factors?

 

 

Thanks!

My son (age 6) had a strep infection in the beginning of November. His PANDAS symptoms lasted around 2 weeks and then went away (for the most part).

My daughter had the H1N1 a few weeks prior and it was horrible- In fear my son would get it, I gave the vaccine to my son (about 1 week after symptoms remission and 3 weeks after Strep).

Within 2 days of the vaccine, his PANDAS symptoms came back FULL force. I am not sure if this was caused by the vaccine, the strep or a result of both. ????????

He had 2 more very hard weeks of Anxiety and Rage attacks, constant crying, regression in hand writing, and severe depression ("why do I feel like this? I am so sad and angry, make it go away") and confusion ("What did you say" "I do not understand" resulting in everyone repeating instructions and responses).

Now his anxiety issues are finally "controllable" and his tics are at a minimum.

[smartyjones]

i was surprised to see when i got my son's medical records as we got further into this that i there was a note that i had called the ped office b/c i thought he was having a reaction to the chickenpox vaccine. neither my husband nor i recall what it was so it couldn't have been too bad.

 

with his first pandas episode, he had a terrible mouth rash. i do think it's somehow related but don't know how.

 

also - there was something on here recently about croup. he had croup at 6 months (in key west no less - luckily we found a great doc at a clinic on a sunday - key west is NO place to have a sick kid!). chicken pox vacc at 1 year. first diagnosed strep at 22 months. pandas at 4 years, 4 months. it's all very far apart timewise but i think has to have some relation.

 

oh something very odd -- he's little, probably just now about 20percentile but has beefy thighs. i noticed last year with pandas, 2 dot marks on his thigh - like where you get your vacc. it seemed raised then although he hadn't had vaccs recently. he still has those two marks. they trouble me whenever i see them.