COVID vaccine?

[ejh]

Does anyone have experience with the COVID vaccine for kids with PANDAS? My son’s neurologist advised against it based on really bad flares for PANDAS kids after the flu vaccine , and the similarities between the vaccines. I heard about one young adult who ended up in a really bad flare a couple of weeks after the second shot. Steroids did not help. Any other experiences? 

[wisdom_seeker]

My PANS kid (DS21) and I are very happy that he's had the COVID vaccine series.   He's just had both Pfizer shots and did OK.  Unpleasant headache and some fatigue for ~36 hours starting the day after the second shot, as well as a bad arm ache.  He's more sensitive to pain due to chronic pain.   I treated it with NSAID. 

FWIW, we timed his vaccine jabs to be 2 days before his regular anti-MCAS mast-cell-stabilizing infusions.  Those include hydration plus meds like Benadryl and an  IV NSAID.   

It was somewhat scary, but I would do it again in a heartbeat.   For us is a huge feeling of relief, because the risk of getting COVID is still high with the more infectious variants still popping up (see the SA, Brazil and India strains, ones that haven't really had time to spread in the US yet). 

My thinking is that a COVID vaccine flare is likely to be way less than the flare from COVID itself!

My (obsessively) careful ex and his autoimmune gf both got COVID in Oregon this spring, a few months after they'd taken a long Airbnb vacation from California and its surge.  His gf's adult daughter was high-risk as well, and they all tried to be VERY careful to avoid infection.  Unfortunately even with the California or UK strains, the aerosol dispersion of the virus is efficient enough and the infectiousness high enough that the old CDC guidelines of 2-layer cotton masks and surgical masks weren't good enough.   And those strains are still better than the Brazil, So Africa or India strains.    So I am VERY happy that if my DS were to get infected come this summer or fall, he's likely to have a mild case.  

PANS kids are different.   My PANS kid (DS21) used to flare with every infection, no matter how small, as well as with intense cognitive or emotional stress.  He stopped flaring with infections after we gave four cycles of IVIG and treated his tick-borne infections. 

I'd not been giving him flu shots since PANS onset, but he was too ill for school, nobody in our house was attending school, so we figured the risk was low.  Still, *I* got influenza three years ago, and that sure was scary.  I went to urgent care, got an antiviral, so did he as prophylaxis, we both masked indoors, I wore gloves and washed my stuff as soon as I brought them to the kitchen -- and he stayed healthy, or asymptomatic.   

Unlike the flu vaccine, I would approve the COVID vaccine even if he were still flaring now with infections. 

I have that much respect for the virus that causes COVID and what it can do to people with wonky immune systems.   
However I would likely give NSAIDs right after w/o waiting for side effects, and have steroids ready.  Above all, I would do what I didn't have access to then --  consult an integrative MD to see how to best guide the immune system to make immunity w/o shifting into overdrive.  

PANS is hard on the body.  So is COVID. 

Good luck with your decision.  If the decisions were obvious, none of us would have to post, right?

hugs,

WS

[ejh]

wisdom_seeker thanks so much for your response. I have some follow up questions. Did your son get four rounds of high dose IVIG? You mentioned tick-borne infections; how were they diagnosed?
My son was diagnosed with PANDAS at age 12 (had had symptoms since he was very little, major strep induced flare at age 12 that led to diagnosis). He had a tonsillectomy and high dose IVIG in the six months after diagnosis. Six months after IVIG I realized I had not worried about him for months. He was a different kid. He is now 18 and he usually gets some symptoms with infection but they go away. About once a year they don’t and they get worse and he gets high dose iv steroids and that takes care of it. He has been in school and is now going off to college in the fall. I am terrified of the vaccine sending him into a massive flare. He has not had flu vaccines or the HPV vaccine for this reason. He did not see an integrative MD and I wonder if he should. You mentioned having steroids ready after vaccination, but that would suppress the immune response to the vaccination. Of course the immune system is at that point responding in the wrong way but I wonder if it would also suppress the immune response the vaccine is meant to trigger- which would make the vaccine without effect. Not sure about this of course. 
 

Again, thanks for your response. This is such tricky territory and it is so helpful to hear about your son’s experience. 
 

hugs, ejh

[bws1565]

My DD had Covid last march with no ill effects.  My husband and me were much sicker, and we both turned out well after several days.

I would not do the Covid shot due to its not being FDA approved!  It has emergency use authorization only!

[SROTH]

My son had the Pfizer vax (he is 12) last week.  He is having a flare with his OCD, but otherwise ok.  We are managing it with our pediatrician.  I would rather he get this flare than what would be a MUCH worse flare with COVID.  Having spoken with the pediatrician and UCSF pediatric neurology, that seems to be the consensus.  His second shot is in 2 weeks, so will see how he fares after that one.  Either way, just happy that the flare is not horrendous and I presume, it will be temporary.  

[MarylandMama]

I came to this site, hoping that other people were talking about this topic.  My 13 year old has been symptom free for about 4 years and is having a flare after receiving her first dose of the Pfizer vaccine.  We have a message in to her previous neurologist to seek guidance about what to do about a second dose.  Will pass along anything I hear and will check to see if anyone here continues to have information or experiences to share.  

[ejh]

MarylandMama thank you for your response. Please do let us know what the neurologist suggests.

[MarylandMama]

We aren't able to get an appointment with the neurologist until the end of July but the scheduler told me that their office has had a flood of calls due to flares after a COVID vaccine.   We are going to delay our child's second dose of the vaccine until we can get direct guidance from the neurologist if there are some measures we can take to help her get the next dose without making things a lot worse.  In the meantime, we will be attempting to self-treat and try to calm the inflammatory response until we can get into the office.  If anyone has info on that side of things, let me know.  Best of luck, ejh, and all! 

[Mayzoo]

I am debating about getting the vaccine for my daughter, but still on the fence.

 

Sadly, anything you do to reduce the inflammation, (ibuprofen, steroids, turmeric, etc...)will reduce the effectiveness of the vaccine as the inflammation is a normal part of the vaccine working.  But even some reduced effectiveness is better than I none I suppose.  Hence, why I am waffling--we are not even at base line right now, and my kiddos immunologist will not weigh in on his experiences thus far, so I am fearful of the effects the vaccine will have. 

 

They do not recommend Ibuprofen with this vaccine, and you are to avoid steroids all together for at least 2 months prior to normal vaccines (if I recall the time frame correctly).  

 

On 6/7/2021 at 2:27 PM, MarylandMama said:

We aren't able to get an appointment with the neurologist until the end of July but the scheduler told me that their office has had a flood of calls due to flares after a COVID vaccine.   We are going to delay our child's second dose of the vaccine until we can get direct guidance from the neurologist if there are some measures we can take to help her get the next dose without making things a lot worse.  In the meantime, we will be attempting to self-treat and try to calm the inflammatory response until we can get into the office.  If anyone has info on that side of things, let me know.  Best of luck, ejh, and all! 

 

Edited June 9, 2021 by Mayzoo

[MarylandMama]

We scored a cancellation appointment and were able to get into our neurologist today.  She advised against a second vaccine dose for our child and wants to do blood work to see antibody response from the first dose.  Our child's heart rate has been quite elevated as well so she's referring us to cardiology to just check and see if there has been any heart inflammation from the vaccine as well.    After the blood work, we can do a small steroid burst to manage the rest of this flare.   Not exactly how I hoped this appointment would go and I'm anxious about not getting a second dose but I understand why the neurologist made the recommendation that she did.  

[kristin0713]

My 15yo PANS daughter had both doses of Pfizer in June.  She had a very slight increase in anxiety for a few weeks.  I am very glad we all got vaccinated, because a member of our household had a breakthrough case and the rest of us did not catch covid. I do think it would have been worse for my DD to get covid rather than the vaccine. 

[4Nikki]

Doc. say the vaccine is not a consideration for our kiddo. Her immune system is just too sensitive. We can't even give her supplements without going low and slow.  
 

(Update) We just went over our strategy, and kiddo is already on the recommended vitamin D, C and zink, we’re going to add some melatonin. DD’s pandas doctor won’t prescribe ivermectin because she’s been threatened by the AMA for previous prescriptions and will get in trouble if she does it again. I’ve been reviewing how the covid virus and the immune system works. I’m wondering if DD’s macrophage response is the one that causes inflammation and potentially the cytokine storm. I’m wondering if the inflammation markers she gets is exactly this. I’m wondering if our kiddos mitochondrial dysfunction triggers the flares via this storm response. I’d say look “cytokine storm” up on YouTube, but they delete many of the videos. There are actually some ethical doctors disseminating information on YouTube and some stuff is still up there. I can still find some of the uncensored stuff on https://odysee.com that further explains how ivermectin works. It’s not enough that our kids have to deal with pandas/pans. Now, I’m having to navigate corrupt bureaucracy just to put together a first aid kit.

Edited September 11, 2021 by 4Nikki
Update

[Mayzoo]

 

Just wanted to write an update about the Covid vaccine:

We did get our kiddo (DD 19) the first Pfizer Covid shot on 10-14-2021.  Very few PANDAS related issues so far.  I took 4 days off to monitor her like a hawk, and I am glad I did since on the second day her heart rate and her blood pressure went up more than I am comfortable with.  Pre vaccine her normal is 95/50 ish blood pressure and 60-70 heart rate.  By mid day (about 24 hours post vaccine), her heart rate was 98-110 and her blood pressure was ~ 124/82 and both still rising from what I could tell.  I started her back on clonidine for 4 days and all went back to normal within a few hours, and then I just keep checking her every few hours.  All her numbers are back to normal (even after stopping clonidine) with no real PANDAS related issues yet (possible slight increase in separation anxiety, but not sure if that is related or not).

We went with the Pfizer since that is a lower dose than the Moderna and thus less likely for the side effects as a result.  Kiddo is also very slight in build (~80lbs).  I plan to wait 35 to 42 days for the second shot to let her system rest.

Edited October 24, 2021 by Mayzoo