blood test results back; questions

[jph]

My PANDAS/PANS (not yet sure what/which, tho dr. thinks PANS) son's immunoglobulin testing blood tests came back. Everything was fine except that his strep titers are very low, indicating (via the nurse who gave me the results) that his body is unprotected from strep. Dr. recs giving him the PCV 13 vaccine (13 Streptococcus pneumoniae strains) then test titers in a few weeks to see if it works.

 

Questions/thoughts:

1. Why are strep antiobodies absent?

2. If the problem w/PANDAS is that he's not making antibodies to strep when coming in contact w/it naturally, how is the body going to suddenly do it right with the vaccine?

3. My son has never had a strep throat that I'm aware of, and he's never had a positive strep test (we have done swabs and cultures in our search for answers throughout the years). His flares over three years have never appeared to correlate with exposure to strep. I'm not sure he has any issue with strep, so I'm very concerned with this crap-shoot approach.

 

Your thoughts, please?!

 

 

[rowingmom]

Our daughter's PANS reactions were the result of her bartonella infection. If you are finding that strep is not the issue, perhaps another infection is.

 

In our case the underlying bartonella infection increased her PANS reactions to other viral/bacterial infections as well, and she would react not only with her own infections, but to those of others as well, even if she was not showing outward signs of infection.

 

For some reason our children's immune systems are not functioning properly. The 15 month MMR vaccine resulted in a loss of fine motor ability and oral apraxia for DD, which she has overcame with intensive speech therapy and OT/PT . I am hesitant to further vaccinate in her situation.

Edited October 27, 2013 by rowingmom

[Mayzoo]

What test exactly is low? My daughter's ASO and AntiDnase are both very low. They are low even when she was in the midst of 60ish days of strep infection. Her streptozyme is negative and her Antistreptoslysin O Ab is 8.1 with a range of 0-200. However, she is also immune compromised based on testing her IgG, IgA, IgM and IgE. Her immuno states she likely does not make antibodies normally due to her being compromised. Have you tested the Ig levels yet? I highly recommend testing Ig levels prior to vaccinating, and testing other titers before vaccinating for those.

 

IMO, if the immune system is not working properly, I would be leery to vaccinate. My daughter's titers are through the roof for almost everything, and she is not "fully" vaccinated. Her immuno is trying to lower her rubella titers actually (147 with range of immune anything > 9) and she only had one rubella shot at 15mo, she is 11 now. With a faulty immune system, you cannot predict how the body will react to the vaccine.

Edited October 27, 2013 by Mayzoo

[pr40]

you need to consult an immununologist who might know what she is talking about. Vaccine would only make your child make anti-bodies and anti-bodies are, if I understand how PANDAS works, the problem usually, not strep itself.

then there is this also, can one be without strep? we are surrounded by various strep cultures, even probiotics have them. if your child is not making anti-bodies, I guess that to be a sign of a problem with the immune system, which, by the way, seems to be the one of the reasons insurance companies might approve IVIG for auto-immune condisons

Edited October 27, 2013 by pr40

[mama2alex]

I think there may be some confusion. The streptococcus pneumoniae titers check for antibodies to bacteria that cause ear infections, pneumonia, and other infections. They are not responsible for the strep you are thinking of (strep A/strep throat/the strep implicated in PANDAS). Doctors check these titers to look for a particular type of immune deficiency. The mainstream protocol is to vaccinate with a pneumococcal vaccine such as Prevnar for younger children/babies or PCV (Pneumococcal Conjugate Vaccine - 13 strains) and then recheck titers. If they rise a certain amount, your child is not considered immune deficient because they mount an immune response to the vaccine. This process does not check their immunity to strep and there is no vaccine for strep.

 

The overlapping terms make it very confusing, but if you do some googling, it will become clear.

[Mayzoo]

I think there may be some confusion. The streptococcus pneumoniae titers check for antibodies to bacteria that cause ear infections, pneumonia, and other infections. They are not responsible for the strep you are thinking of (strep A/strep throat/the strep implicated in PANDAS). Doctors check these titers to look for a particular type of immune deficiency. The mainstream protocol is to vaccinate with a pneumococcal vaccine such as Prevnar for younger children/babies or PCV (Pneumococcal Conjugate Vaccine - 13 strains) and then recheck titers. If they rise a certain amount, your child is not considered immune deficient because they mount an immune response to the vaccine. This process does not check their immunity to strep and there is no vaccine for strep.

 

The overlapping terms make it very confusing, but if you do some googling, it will become clear.

 

I have read up on this method, but fail to see why they would use this instead of checking Ig levels to determine the status of the immune system, but that is probably too general. Since it is for a more specific immune testing, I am now curious what that would be? I have not read up on it a lot, so if you happen to know off hand, please fill me in. If not, I will try to read up on it more later.

Edited October 27, 2013 by Mayzoo

[mama2alex]

I'm not sure I understand your question Mayzoo, but in any event, I'm no expert on this, as we just tested our son for this - he did not turn out to have SAD. You might try searching the forum for "SAD" or "specific antibody deficiency." This topic has been discussed in the past.

[Dedee]

Evidently this is a pretty common way to test the immune system. We had a couple of doctor's who wanted to do this with my daughter.....Give the pneumoccal vaccine and see what kind of response she mounts. They wanted to do it because her Streptococcus Pneumoniae serotype titers (Not Strep A titers) were low on some initial immune testing. We elected against it mostly because my daughter had reacted poorly to vaccines previously. I think it is a way to try to prove a need for IVIG if that is the way you are going though.

 

Dedee

Edited October 28, 2013 by Dedee

[peglem]

My PANDAS/PANS (not yet sure what/which, tho dr. thinks PANS) son's immunoglobulin testing blood tests came back. Everything was fine except that his strep titers are very low, indicating (via the nurse who gave me the results) that his body is unprotected from strep. Dr. recs giving him the PCV 13 vaccine (13 Streptococcus pneumoniae strains) then test titers in a few weeks to see if it works.

 

Questions/thoughts:

1. Why are strep antiobodies absent?

2. If the problem w/PANDAS is that he's not making antibodies to strep when coming in contact w/it naturally, how is the body going to suddenly do it right with the vaccine?

3. My son has never had a strep throat that I'm aware of, and he's never had a positive strep test (we have done swabs and cultures in our search for answers throughout the years). His flares over three years have never appeared to correlate with exposure to strep. I'm not sure he has any issue with strep, so I'm very concerned with this crap-shoot approach.

 

Your thoughts, please?!

 

 

1) If you are talking about ASO & AntiDnase titers being low- those technically are not strepA antibodies per se, but antibodies to toxins that are produced by strepA bacteria. And many, many PANS kids have low #s w/ those, even in the face of numerous documented +strep tests. In the general population, 40+% do not have these titers elevated even w/ a documented case of strep. There is a paper in the pinned threads about this- and I don't remember the exact #s, but its not that uncommon.

 

2) This sounds like, as somebody else mentioned, step pneumoniae titers, and yes, different critter than strepA. This was probably a baseline draw, and if your child does not have protective levels they don't know if that is because he's not had exposure to those strains of strep pneumonia or because he's not making the antibodies to it. So, they want to administer the vaccine, which has a standardized response to compare to yours. Then they'll redraw titers after about 2 weeks to see if your child is able to mount an adequate immune response to those types of bacteria- encapsulated bacteria. StrepA is another type of encapsulated bacteria and if you do not produce protective levels of antibody to the vaccine it indicates that your immune system is not responding properly to encapsulated bacteria. The dx for that is Specific Antibody Deficiency (SAD), and it can qualify you for IVIG, but usually a low dose only.

 

3) StrepA is the trigger for PANDAS, but PANDAS is a subset of PANS, which includes all infectious (and possibly allergic) triggers for the behavioral/neurologic symptoms. So, not really a crap shoot, but checking for one of many possible triggers.