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Sonshine

vaccination titers

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Is it common for kids with pandas to fail to show titers to their childhood vaccinations? DS15 received varicella and booster, but failed titer test. We agreed to immunize with pneumovax (very difficult decision and thankfully no negative response or flare) and retest for those titers 6 weeks later. We are waiting for those results. If there is no response, doctor feels she can get insurance coverage for IVIG. Anyone with have experience with this?

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My kiddos titers are through the roof for everything but one. She had one varicella shot at about 1 yr. Her titer for that is 1113 with a positive of over 165. She is actually being treated to lower her out of control titers. However, my kiddo is IGG deficient.

Edited by mayzoo

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We just started down this path, originally for IVIG (very low numbers) and new ID MD tested for vaccination response. Ds15 is negative (is that same as no titers??) for MMR and HepB so far. I was shocked as I'd not even thought about this as a possibility for him. Waiting for other results. Of course this is alarming given the measles outbreak in CA.

 

Not sure of protocol in our case for re-vaccinating or just moving fwd. w/IVIG (week of Feb. 16th).

 

I went thru similar w/my ID MD but mounted an immune response to the vaccines she tested, so no IVIG for me right now.

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I just found this out about my daughter too. The dr. said that she is a "poor responder." We are doing a mannose binding lectin test now. The dr. was afraid the test that you did might cause a huge flair in our DD, so we decided against it. Please repost so we can hear the test results. This is so fascinating. I am hoping that if this is what is causing the issues for our DD, that IVIG may cure her. I hope the same is true for your son.

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Maryaw: It was a difficult decision to make. The vaccine was given three weeks ago (so far no flare) and titers will be drawn again in a week. Doctor wants to rule in/out a primary immune deficiency and also if there is not an adequate immune response to the vaccine, insurance is more likely to pay for ivig.

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I found this website of the Immune Deficiency Foundation. It explains the disorder very well. It sounds like they call it: Specific Antibody Deficiency.

 

http://primaryimmune.org/about-primary-immunodeficiencies/specific-disease-types/specific-antibody-deficiency/

 

It sounds like you avoided the flare! Awesome. Please let us know what you learn. Likewise, I'll post what we learn from our bloodwork. It should be back in 10 days.

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Cross posting here (my thread re. insurance approval for IVIG): http://latitudes.org/forums/index.php?showtopic=23585&hl=

 

We canceled the pneumovax23 last Friday b/c IVIG got approved by our insurance and scheduled for TODAY and TOMORROW (!!), so we wouldn't be able to retest titers for immune response after the IVIG. If we don't have sustained improvement, ID MD wants us to get full immunological work-up in a year before more IVIG.

 

Also, turns out ds15 did have Rubeola (measles) antibodies, just not for Rubella. And not for HepB. Still had antibodies from other chiidhood vaccines.

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tj21 - happy to hear you got insurance approval. I hope you see improvement with IVIG.

My son failed to show adequate response to pneumovax 23 and varicella. Referred to

Dr. Lewis at Stanford for full immunologic workup and also hoping to be approved for IVIG.

Best Wishes. Stay Strong.

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@Sonshine - You too. We'll be going to either UCSF or Stanford in a year if we need immunological workup. Will be interested to see how you like Dr. Lewis and the team at Stanford.

 

You too, it's such a long road!

 

Tracy

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We are in the same position right now. We're working with Dr. Frankovich at Stanford PANS clinic. My son does not have titers for Tetanus or Pneumo, even though he was vaxed. Frankovich is asking us to re-vax with the Pneumo so that we can prove immune deficiency and to get IVIG covered. We are terrified of this! Would love to hear from those of you who did and did not have flares from re-vaxing. Also, would love to hear your experience with IVIG, and were the results worth the risks?

 

Thanks!!!

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Hi @pollywog - below is the link to the big IVIG thread on this forum, which I re-read last night.

 

We're in our 2nd day of IVIG, so too early to tell anything. It does really sound like it depends on so many factors that each child reacts differently.

 

http://latitudes.org/forums/index.php?showtopic=21753&hl=

 

Good luck at Stanford!

 

~Tracy

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If you are doing IVIG to help with the antibody deficiency, it is important to understand that this is not a permanent cure. I just spoke with Dr. B about this for our DD. The antibodies wear off after about a month and your child will be right back where they were. You would need to do IVIG every month to keep them protected, unless they eventually outgrow the deficiency. He thought my DD (10 years old) would probably not outgrow it. Her titers were actually about 5% lower now than they were in 2012.

 

Obviously, if your child is constantly sick, even on ABX, then IVIG would be a good idea. We are going to continue with the ABX only. She is doing really well, and I don't want to put her through IVIG every month. I also homeschool her, so she avoids a lot of exposure to germs that way.

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Maryaw:

 

We re-vaccinated with Pneumovax 23 and DS17 did not show an adequate response.

His strep titers increase with exposure to strep even on antibiotics. We are

waiting to see immunologist in April.

 

I wonder if he will recommend monthly IVIG? It sounds like your doctor mentioned

that in your case, if abx didn't keep your dd infection free?

 

If I might ask, were all her other immune function tests normal, IGG, IGM and

subclasses?

 

I wonder how common it is to have specific antibody deficiency and how it is

related to pandas. Did doctor weigh in on that?

 

Thank you for any input.

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First off, here is a link to an excellent resource online about immune deficiency:

 

http://primaryimmune.org/

 

They sent me a large package, as well as a list of immunologists in my area that specialize in treating the condition. I just met with the new doctor last week, and he ordered additional testing. I will let you know those results when they come back.

 

All of my DD's various IGs are either low or the very low side of normal.

 

I went to the PANS conference a couple of weeks back at Brown. There was A LOT of talk about immune deficiency. It seemed like maybe it was a fairly new puzzle piece. I have been to three prior conferences and this was the first I remember hearing about it. A graph one doctor displayed, showed the immune system and how much it improved(matured) in the "normal" population vs. in PANS/PANDAS children. The "normal" children showed steady growth, while the P/P children were flat to slight growth. I was trying to find it online but can't. If I do, I'll post the link.

 

We see Dr. B and Dr. Murphy of USF. Dr. Murphy seems to think the immune deficiency is the reason for my DD's PANS. She seemed very pro-IVIG. If my DD was in school or if this was earlier on in her treatment, I would do the IVIG. However, she is doing so well right now, it doesn't make sense to do it. If things worsen for her, either with PANS or frequent infections, I would give it a try.

 

Will post when I get the other bloodwork back.

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