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Hi. My son had incapacitating PANDAS/OCD, SC for many years. Sadly, like most of the kids on here, he was very, very sick. We worked so hard for many years to get him well. Travelled all over the country many times, 7 ivig's, T&A, long term ABX, and 5 weeks at the OCDI. He is 98% cured now! Thank God! He is attending college in the fall and they are requesting a 2nd varicella vaccine or a doctor's note. We haven't seen a PANDAS doc in a few years and it would probably take a few months to get in. Anyone have any suggestions? He had a febrile seizure at about 10 months after his MMR vaccine. I really don't want to risk giving him the vaccine and having a reaction. Thanks for any help.

 

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We're going to be facing a similar situation ourselves soon, so I'll be interested to hear which way you go here. So glad to hear he's doing so well and ready for the college experience!

 

I like the idea of pulling titers; that way, if he's still producing varicella antibodies, you can get a note attesting to that definitively and know that he's still protected.

 

If, however, he's not still "immune" to chicken pox, I guess then there are a few things to consider. I mean, getting chicken pox at an older age isn't something to mess with, as I understand it, so I don't know if I'd be able to do the "benefit/cost" analysis and determine absolutely, in the absence of other considerations, that I'd go for exempting him immediately. The things I think I'll be taking into consideration a year from now, when we're in a similar position, are the following:

  1. How's he been doing, immunologically, in the last 12+ months? Does his immune system appear to have "matured," i.e., is he having more typical responses to immune triggers? (This is what we've seen in our DS of late. Where he used to be hyper-immune and so rarely caught a cold or anything else, but his allergies were essentially a year-round thing, he now responds more "typically" in those regards: catches colds when they're going around, displays allergy symptoms when the pollen or mold count is high, but not 24-7, etc.)
  2. Is he generally healthy? If vaccinations are about putting an extra "load" on the immune system, then you don't want to "top out a glass" that's already edging toward being over full. On the other hand, if his immune system is not being taxed by other issues at present, a single vaccine (not a "bunched" one like MMR) might not cause harm at this age/at this time?
  3. If you decide to revaccinate, can you do it soon enough that, should he have a PANDAS/PANs response on any level, he'll still be at home with you so that you can help him through the "blip"?
  4. Does he have tools and resources at his disposal if he should have an adverse reaction to the vaccine if you were to go ahead with it? (CBT, ERP, supplements, calming strategies, etc.)

So much of what I hear and read these days from folks like Dr. Bock is that it's not the immunization itself that is "bad" . . . that rather it is the timing and magnitude of the vaccination. That bombarding our young childrens' immune systems with multiple vaccines, within a fairly compressed time frame, is part of what has contributed to a lot of the challenges they face, particularly if they are genetically predisposed. So approaching immunizations in a smart, timely way is key: to avoid bunching, multiples and immunizations at points in time at which the immune system is already being challenged by other factors.

 

I'll be thinking of you, Joan, and wishing you and your DS the best! Let us know which way you go and how it all goes!

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I don't know how it works for college, but for grade school and middle-high school, most states allow a philosophical and/or religious exemption in addition to medical. Have you looked into whether that's an option? The laws vary by state, but if you're lucky it's just a matter of filling out and signing a short form. The National Vaccine Information Center is a great resource.

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What does your son have to say about it? Sounds silly, but considering his age, going off to college, etc... his input should be taken into consideration. If you haven't already, it would be a great way to open a discussion of what he needs to be aware of on the PANDAS front now that he is going to be taking care of himself.

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Thanks so much for your posts and your well wishes. The info is very helpful. We ended up being exempt for Religious reasons. I am a little worried about him getting the chicken pox as an adult.

 

Last week, I showed my son a video of when he was really sick with PANDAS 3 years ago. His face dropped as he watched it-- almost in disbelief. He asked me to send it to his e-mail too so he could look at it as a reminder when he starts to feel anxious. PANDAS kids forget how sick they were.

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Jpdad I am typically pro vaccine, including flu vaccine , with the exception of HPV menactra. Having read the vaccine reporting data, and seeing the serious side effects directly following the HPV menactra vaccine, my kids will not be getting that one. It was the only vaccine as I recall that had events reported immediately after (outside of allergic reactions to others) leaving no ambiguity as to the cause of the reactions.

Edited by hopeny
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Requirements at NYU, where DS is (amazingly) starting this year:

 

For MMR, either: MMR immunizations on two different dates; the three immunizations separately; evidence of titers; a doctor's note saying immunization is not a good idea; or religious exemption.

 

For Meningitis, you just have to have the immunization unless you are over 21 and not dorming.

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  • 3 weeks later...

Just wanted to put in my experience: I had the meningitis vaccine when first going off to college, just a few months before knowing that I had PANDAS. We knew something was up with my body, obviously, and debated the vaccine but decided to go for it. I didn't experience a reaction for that. I was happy to have it this past year when there was a small outbreak of meningitis at one of the colleges in my city; I felt protected. For me, based on my symptoms, a PANDAS exacerbation is better than Meningitis and I would probably risk it again if I was ever living back in a dorm situation.

 

Now with other ones, like the chicken pox vaccine I got a letter of exemption from my PANDAS doc via e-mail, no appointment needed. Technically I'm not allowed on campus if there's a chicken pox outbreak (yeah, ok, I'm sure the chicken pox police will be around to enforce that one), but to meet I'd rather risk maybe getting the chicken pox to maybe having vaccine reaction.

 

I've done very well with vaccines, only had one bad reaction as a child that spurred on PANDAS symptoms. My doctors are great about planning them, only doing one at a time, and making sure my immune system is not engaged if I'm going to need one. I do need a Tetanus booster soon. I've been putting it off, but I feel like it will likely be fine if we plan ahead.

 

So, like with all treatment, risk-benefit. To me, Meningitis and Tetanus are scarier than PANDAS. Chicken pox, not so much...

Edited by emmalily
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