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

Hayley

Pneumoccocal Vaccine

Recommended Posts

In searching the archives, I see that the consensus is NOT to redo Pneumoccocal vaccines in cases where children's bloodwork shows they are not holding the immunity because of the risks involved and fear of kids going off the deep end. I have heard stories of kids who have negative reactions, but have also heard some do ok.

 

We are getting a lot of pressure from our immunologist to revaccinate to see if my daughter might hold the vaccine this time. She has been diagnosed with common variable immune deficiency (IgG 394 and IgA 12, then up to 24, prior to IVIG). After IVIG in December, the levels went up of course. However, over the past couple of months, they are starting to drop again so we are watching and waiting. I'm not rushing into anything right now (she's currently stable and we are trying to just enjoy this while it lasts, don't want to rock the boat!), but I admit I'm a little nervous about her not being protected without these vaccines (in part becuase the immunologist and even a doc from the NIH PANDAS study are freaking me out!), but are not ruling out doing it at some point. That said, there's no telling if she would hold the vaccine even if we did it.

 

Is there anyone out there who DID redo the pneumoccocal vaccine? If so:

 

1) was your child stable when you did it?

2) did s/he hold the immunity after revaccinating?

3) was there an adverse reaction? And if so, did s/he recover and how/how quickly.

 

Finally, does anyone understand why there is a negative response in some kids? I was told the vaccine is not live and is comprised of sugars so I don't really understand how or why. Not that it matters, but I'd love to make sense of this!

 

Thanks for sharing any relevant experiences or insight!

Share this post


Link to post
Share on other sites

We did the pneumonia vaccine about 18 mo ago, at the strong urging of NIH. DS had been through two rounds of IVIG, however, had gotten strep immediately after round two, and was not stable at the time he did the vaccine.

 

We saw no positive or negative changes as a result of having done it. DS had nearly no immunity prior. Labs afterwards showed double or better the prior immunity levels. However, that being said, the prior numbers were incredibly small, so tripling a .01 in an area where a healthy person might have a 12 shows that having done the vaccine did not offer much additional immune coverage.

 

DS has been in remission for 10 months. Dr. B. told us not to have any vaccine during the first two full years of remission for any reason and then to proceed with caution thereafter.

Share this post


Link to post
Share on other sites

I struggled with this too. My immuno really wanted it too because my DS has a complement deficiency (mannose binding lectin) and they thought SAD on top of it would warrant some other treatments. I ended up doing it. I waited until he was stable and I saw no adverse reaction. He did have a strong positive response to the vaccine. He had the vaccine the first week of January and had been flare free since. We will still refrain from other vaccines such as MMR, Chicken Pox, Dtap etc. I just don't want to risk it. It was a really tough decision, but in our case, no harm done that I can see.

Share this post


Link to post
Share on other sites

1) We redid, daughter was not particularly stable to the best of my recollection. We did wait to get a negative strep swab before vaxing.

 

2)She did not hold protective immunity afterwards.

 

3)No noticeable adverse reaction.

Share this post


Link to post
Share on other sites

Hi Hayley,

It's great to hear your daughter is doing well! We have not revaccinated our dd (who also has CVID) and will not do so any time soon. We also see Dr. B. We are starting to see an immunologist who is closer to us but have not talked about any vaxes yet. I believe the thought behind not vaxing PANDAS kids is that, even though it is technically a dead virus being injected, it is still designed to to create an immune system response - ideally IgG antibodies. So something has to take place to make the immune system do this. With PANDAS/PANS kids, it's the same as any other assault on the immune system and can increase the autoimmune response that is taking place, increasing inflammation, etc. and continuing the cycle.

 

Btw, my dd got her pneumococcal strep levels tested and was at minimum or below for all of them. Did you have any protection at all show up? Interestingly we had HIB, Diptheria, and Hep B also tested. She showed 0 immunity to all of those.

 

Best-

Share this post


Link to post
Share on other sites

Hi Hayley,

It's great to hear your daughter is doing well! We have not revaccinated our dd (who also has CVID) and will not do so any time soon. We also see Dr. B. We are starting to see an immunologist who is closer to us but have not talked about any vaxes yet. I believe the thought behind not vaxing PANDAS kids is that, even though it is technically a dead virus being injected, it is still designed to to create an immune system response - ideally IgG antibodies. So something has to take place to make the immune system do this. With PANDAS/PANS kids, it's the same as any other assault on the immune system and can increase the autoimmune response that is taking place, increasing inflammation, etc. and continuing the cycle.

 

Btw, my dd got her pneumococcal strep levels tested and was at minimum or below for all of them. Did you have any protection at all show up? Interestingly we had HIB, Diptheria, and Hep B also tested. She showed 0 immunity to all of those.

 

Best-

 

Thanks, Landamaom! When DD's pneumococcal strep levels were tested pre IVIG, out of 14, half were below 0.35 (the threshold according to the lab) and five of those were below 0.2. Another five were under 1.0 (only two were 1.0 or over). I did have another immunologist say he didn't think that was so bad, but the NIH folks seem to think it's pretty awful. Post IVIG, she is showing immunity, but that is, evidently, based on the influence of the immunoglobulin she got as part of the IVIG.

Share this post


Link to post
Share on other sites

My ds8 was diagnosed as IgG2 deficient at age 5. Our immunologist insisted on re-vaccinating with pnemovaxx (sp?) since he had already been vaccinated with Prevnar several times and it did not seem to take. We, and our immunologist feel that the vaccine started his PANDAS since he had never had PANDAS prior to the vaccine. Onset happened about 2 weeks post vaccine. I STRONGLY urge against it. This is just one mom's opinion.

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

×