Jump to content
ACN Latitudes Forums
  • pandas-cover-cropped.pngYour Child Has Changed; Should You Consider PANDAS?

    Have you seen our PANDAS eBook?  Our book is a helpful primer in a friendly question & answer format.  This eBook contains useful information to understand the symptoms of PANDAS, how it is diagnosed (including lab tests), the different types of treatments, approaches for prevention, and how to find the help and support that you need.  Your satisfaction is guaranteed. Learn more

bulldog24

Can vaccines cause a flare?

Recommended Posts

My son started with severe neuro psych issues in feb. Just woke up one day with severe OCD. He has had strep many times. He is 5. My daughter was being treated for strep at the time. long story short.... 2 months later he is 99.9% better. He doesnt have an official diagnosis. The pedi doesnt think its PANDAS based on AZO tests being low. (rolleyes) But I know its pandas. I have no doubt. you dont wake up mentally ill one day and it goes away 2 months later. So anyway we have a neuro appt in 3 weeks. It was a long wait.

 

he saw one neuro but he wasnt good. he also wouldnt accept the pandas dx. He said he had adhd. But that is just a symptom.

 

ok so now... i sent my sons vax hx to the elementary school so he can start in the fall. they call back and said he is not utd on his vax and needs 3 vaccines. I always vaccinate my kids on time but somehow he is overdue? I am so angry. So my son has some undiagnosed problem and now he needs vaccines? So I go to the pedi and complain that this should have been done last october. Heck, my animals get postcards when they are due! SO I told him I was concerned that the vaccines would cause a flare. He said no. i was definitely uncomfortable with giving the vaccines. I then wanted to do one a t a time, not all 3. The doctor said that wasnt a good idea and it would not make a difference. So I vaccinated him. well surprise surprise, he got sick with a fevere and lethargy vomiting for 2-3 days. I knew it. He did get better. That was maybe 3-4 weeks ago.

 

i noticed some behavior changes a few days ago. Today its very obvious that he is flaring up. I am so sad. I knew it was going to happen. He was completely fine! I am sick myself and pregnant and I just dont want my son to go through this again.

 

 

i was on bedrest for 9 weeks so I couldnt get to psychologist as the one we see is an hour each way. So I just called to make another appt.

 

so my q is - is there any evidence that vaccines can trigger PANDAS?

 

Thanks

Share this post


Link to post
Share on other sites

Yes, vaccines can trigger PANDAS. Official evidence? Not sure. I know quite a few PANDAS kids have either had flares w/ vax or it has triggered the PANDAS. My DS's PANDAS was triggered by the FluMist. Both Dr K and Dr T have said no more vaxes for my DS.

Share this post


Link to post
Share on other sites

My daughter's flare started after a flu mist. The worst vaccines are the anti-viral's (such as the flu or chicken pox vaccine), although any can be the culprit. We have decided no more anti-virals for my kids for sure.

Edited by Dedee

Share this post


Link to post
Share on other sites

There are the research docs and the practicing docs. I'm not sure about documented research with pandas/pitand and vaccines. The practicing docs, the specialists on the front lines with our children advise against vaccines. These are not necessarily "anti-vaccine" physicians, but ones who realize the benefit does not out-way the risk for our children.

 

My dds currently see dr B. I have a letter from him for both of my girls. They are older, 11 and 8, so they already have had most vaccines. I will give the letters to my ped at there yearly well- check this summer. She will yield to the specialist, but would otherwise give me a hard time. PA is easy for medical and religious exemptions for vaccine, but my girls will have to stay home if there is an outbreak of something they are not vaccinated against.

 

You have your hands full right now. If you can swing it, you should try and get one of these specialists on your side. Some folks are successful arming themselves with research and changing hearts and minds, but most of us haven't experienced that. Don't beat yourself up; you are way ahead of the game compared to most.

Share this post


Link to post
Share on other sites

My son had a very bad flare with the H1N1 shot before a Mexico trip back when the outbreak happened. It was post PANDAS but pre dx. If we'd known, we wouldnt have done it. Our ped is pro vax, but he agrees that our son may need to be treated differently. We have kept up to date on his vax (he'll be 4 in Oct), but we only do one at a time and no more combo shots so we can really track any reactions. We've had no problems with this approach.

Share this post


Link to post
Share on other sites

We were advised by our PANDAS specialist NOT to give a tentanus booster, flu or any other vaccine. He did not want to prompt any immune response.

Share this post


Link to post
Share on other sites

Thanks guys. I am disappointed in myself because I knew this would happen. he got the MMR, chicken pox and the another with tetnus combo. I wanted to take him to see my Lyme doc or doc b in ct right when this started in feb, but I was unable to even sit up for more than 5 minutes and the drive for each is hours long. I believe strongly in vaccinating, but i also believe its not for every one. I dont know what to think. How long can the flare last from vaccines? I know it prob varies from child to child but just wondering. this wouldnt have had to happen if they did it when they were SUPPOSED to in the fall. I am not happy and cant wait to tell his doc (who is usually very on top of things) I TOLD YOU SO. not that it makes the situation better, buut maybe hey wont treat me like a nut next time.

 

Its kinda "funny" that I brought my daughter in at the same time as my son and she had strep. my daughter went near my son and the pedi freaked out and went to her and gently moved her away from him and firmly said, I dont want you any where near your brother. Not PANDAS huh? why are you so concerned about him getting strep then?

 

makes you say hmmmmmmm?

Share this post


Link to post
Share on other sites

I have been warned about specific vaccines, including the flu shot with H1N1. Both docs who warned me are big gun PANDAS specialists. I didn't let my son get the flu shot (just instinct) even before his acute episode. Some Peds just don't know - they are not specialists. If I had a dime for every incident of arrogance demonstrated by various Peds during the last 2.5 years while I tried to get help for my little boy, I would be rich....but what would be even better, poor, with a healthy child. So sorry for your trouble...

Share this post


Link to post
Share on other sites

I don't want to make you any more upset, but those 3 shots are actually SEVEN vaccines. :( I believe that it's likely the H1N1 shots at the end if 2010 that brought PANDAS out in my son (7). He got strep 2 weeks after his 2nd shot & went into exacerbation a month after that even tho' it took 8.5 months, another strep infection/exacerbation, 2 peds, & 1 PANDAS expert and to get the diagnosis. We did have issues when he was little too, which I'm pretty confident was undiagnosed PANDAS. But we are done with vaccines as far as I'm concerned. I need to make it official with whatever waiver I need to get.

 

Boo to your ped. As far as length, it will vary. And not to freak you out more (sorry!), but subsequent exacerbations can get worse. My son's 2nd one was definitely worse than the 2nd. His flare post-IVIg want as bad, but we were also on a heavy-duty abx. Take care of you too. Hopefully, this illness will be short-lived in your son & an opportunity to "educate" your ped with something he should already know.

Share this post


Link to post
Share on other sites

Oh, this makes me so infuriated! Vaccines work by tricking/stimulating the immune system. This is very risky for kids with PANDAS. As SarahJane pointed out, those were seven vaccines given in ONE day! MMR is three, DTaP is three and chicken pox = 7. The fact that this doctor bullied you into something you were not comfortable with is inexusable!

 

My two boys are vaccine injured resulting in autism and PANDAS. My youngest had textbook-example symptoms of encephalopathy; high pitched screaming with arched back, projectile vomiting and fever. His doc said this was a normal vaccine reaction and that he would be fine. He is most definitnely NOT FINE. He is 13 years old now, non-verbal, and unable to be left unsupervised for a moment. His doctor who said everything was fine is no where in sight. He has not helped pay his enoromous medical bills, never helped change a diaper through grade school, never got beat up when he was in a violent PANDAS rage.

 

The parents are always left holding the bag for vaccine injuries. My biggest regret is ignoring my instincts and going along with "doctor's orders".

 

Sorry if I sound bitter. That is only because I am. Vaccines hurt a lot of kids. I am hopeful and optimistic, but angry that doctors are so irresponsible with our childrens lives.

Share this post


Link to post
Share on other sites

you have every right to be bitter.

 

My son has a neuro appt tomorrow (4 month wait). He seems "fine" now. We saw his psychologist last week and he said he seemed much better than the last time I brought him 6-8 weeks ago, so this is good.

 

I do not expect much (besides being annoyed) from the neurologist. My son seems symptom free right now, so I dont think there is anything to find right now.

 

The psychologist suggested this neuro, and I trust my psychologist. But I am not getting my hopes up.

 

We will see.

Share this post


Link to post
Share on other sites

you have every right to be bitter.

 

My son has a neuro appt tomorrow (4 month wait). He seems "fine" now. We saw his psychologist last week and he said he seemed much better than the last time I brought him 6-8 weeks ago, so this is good.

 

I do not expect much (besides being annoyed) from the neurologist. My son seems symptom free right now, so I dont think there is anything to find right now.

 

The psychologist suggested this neuro, and I trust my psychologist. But I am not getting my hopes up.

 

We will see.

 

That is a relief that everything seems alright now. I will keep my fingers crossed for you guys!

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now

×