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Hopeny

Streptococcus pneumonia serotypes

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I am wondering for those of you that have tested this how many do your kids have antibodies to? We just moved and though crossing fingers and toes we seem to be in the last mile of pans/Lyme treatment our new immunologist was alarmed by my dd's results of 3 of 14 antibodies . He is pretty much ready to call it cvid and treat. Thanks in advance

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My son basically had no pneumococcal antibodies. He got a booster and was better for about 3 months. They have dropped steadily since then, but the immunologist has said they are still in the protective range. Interestingly, he tested my antibodies and I am also deficient. However, I never get sick. I find that weird. Not convinced there is any correlation.

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It may depend on which vaccines you got and how many strains were in it. There used to be 7 and now there are more. How old is your dd? My at the start of this journey, DS reacted to very few bands but a few years later reacted to many more. (No extra vaccines).

 

I will try to dig up my research on this for you over the weekend.

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I just received results from immunologist yesterday, dd11 had 0 of the 14. She has low overall igg serum and low igm. Dr said the diagnosis is cvid. Ivig approval should be a "slam dunk". My fingers are crossed, it's been so long since she was well. I know basically nothing about immune deficiencies so any input or info is appreciated.

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Just a warning about the CVID dx (or any primary immune deficiency dx). Many insurance companies require a vaccination challenge test to be done in order to confirm the dx. Usually the pneumococcal titers are tested first (either 14 or 23) and then the Prevnar or Pneumovax vaccine is given. 3-4 weeks later the titers are drawn again and there should be a 3-fold increase in titers; if there is not, a person is considered to have a primary immune deficiency. This is standard practice of treatment among immunologists.

 

Be informed of your doctor's protocol in this area. Some will vaccinate and think it is no big deal. For some kids (not suggesting all) with PANDAS/PANS vaccinations are a big deal.

 

We fought our insurance company when they wanted to see our son vaccinated to prove his CVID dx when we had multiple PANS docs telling us he could no longer receive vaccines because of his history. It was a long, hard, ugly fight.

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CVID is one kind of primary immune deficiency.

 

Good point about the IVIG dosing - I remember reading on this forum that low dose IVIG might exacerbate PANS symptoms. Doc may also order subcutaneous Ig vs. IVIg for an immune deficiency.

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We are set to go through all of this testing with a pandas immunologist in November. I'm don't mean to hijack this thread, but wonder of those that have primary immune deficiencies, are your kids sick frequently? My kid is hardly ever sick but has had weird auto immune issues all his life.

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My son has very low total IgM (selective IgM deficiency) and is hardly ever sick. And like many kids here, often doesn't mount much of a strep response. Always high titres, never actual strep symptoms, until this year (age 12) where he had two active strep infections in 6 months with fever and everything. But truly, rarely sick.

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Thanks everyone. I am working to figure out both of my kids immune picture. The IVIG is actually for my DD4, the non PANS kid. DD4 had a new case of Lyme last August and we are not sure if it is gone but she does not exhibit symptoms. We have just relocated to the Cherry Hill, NJ and are working with a new immunologist who is highly recommending IVIG. Previously both kids saw Dr B and DD4 had a second hospital based well known NYC immunologist. IVIG was batted around as a possibility once or twice before but never really discussed, new immunologist thinks at least DD4 and possibly both need it.

DD4 has been sick constantly since birth. We uncovered a protein deficiency (Mannose Binding Lectin) that causes an immune complement system disorder. The kid gets everything that comes her way and has no HIB immunity despite an extra prevnar vaccine last October. Even Dr B recommended vaccines for DD4 because of her immune issues. New immunologist says no live vaccines. She requires extra abx everytime she is sick. Currently we are batteling a mouth infection that has recurred since a dental cleaning. (thankfully we were able to go to the dental clinic at CHOP and they took it very seriously even giving me the dentists cell phone number and bringing oral medicine in for a consult.) Our new immunologist is worried about her getting pneumonia etc. I am going for a second opinion at CHOP immunology for DD4 because the IVIG would need to be done there. The subcutaneous IVIG sounds a lot more desirable, I am so torn up about this because on the one hand she is only 4 but on the other hand what if she gets something really serious? She already had a mild case of whopping cough that was absolutely terrifying and really had me praying. my PANS DD9 has the same deficiency but not as severe and similar immune profile, but was not terribly sick when she was very little so somehow she seems to be able to manage a bit better. In the meantime I am trying supplements for both kids. New immunologist is very pro IVIG for both and thinks they need a two year course monthly. In the meantime DD4 had different results on the strep serotypes from two different labs, one lab had slightly better results. I just don't know what to do

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