Blood work

[MrPGAPro]

Just got it. Anti streptolysin O and anti DNASEb were negative.

What's that mean..

 

DD7 was diagnosed 2 weeks ago.

[AmySLP]

I will take a stab at this as my daughter has the same. Very simply- these titers indicate that there has been history of strep infection. Some children have very unusually high titers (type 1 PANDAS) and some little to no titer rise (type 2 PANDAS) per Dr. T's categorization (posted a few months ago). Rises in these titers are not necessary for a dx. of PANDAS, as I believe still seems to be the thinking of some docs. who really don't have an understanding of this disorder (we were told this by two docs-a pediatrician & an immunologist).

 

Now the question of why some children do not have a rise in titers despite documented strep positive cultures-per Dr. B- in my daughter's case she is not mounting an immune response to the strep, therefore her body does not produce these antibodies (the opposite of those PANDAS kids who have hyper-immunity and therefore unusually high titers). She has Selective/specific Immune Dysfunction to strep as we just learned from Dr. B last week.

 

Has your child had a more extensive immune system work-up? That may give more information. I am sure you will get some excellent more scientific info from the parent experts on this forum. I owe everything I know about PANDAS to them & I continue to learn much more everyday.

[kimballot]

AMy - thanks for the good explanation

 

MrPGAPro - I am also wondering if you received actual numbers for the titers or just "negative" from the doc. It is important to get actual numbers. Once, we had negative ASO and a DNASE B that was right at the upper limit. The doc just said "negative". I now know that my son does not mount a response that is picked up with ASO, and the DNASE B rises for several weeks after infection. Had I known that, I would have continued to test every week or two to see if the numbers were rising, falling, or staying the same. Instead, the pediatrician and neurologist said "no PANDAS" and we spent 2 1/2 years on the wrong track!

[dcmom]

I am interested to know how a doctor determines that a child does not mount an immune reaction to strep.

 

I believe that (someone here must know this study) something like 30% of kids do not have a titer rise after infection. So, I can't imagine that just a lack in titer rise would indicate no response to strep.

 

I also question (not that I don't believe, but just because I really don't like much about pandas stated as a fact- they know so very little) that failing strep pneumo titers means a child cannot mount a response to strep. S pneumo is a different bacteria, and there is no sample (that I am aware of) that shows how the "normal" population fares on these tests. There is a great possiblity of vaccine failure, in fact there was a study in this last year that stated giving tylenol with vaccinations can really limit their effectiveness. It is not that I don't believe these things- as I really like to be careful what is stated as fact.

 

I also think that Dr T's "types of pandas" is a working hypothesis. While I certainly think, if anyone is going to crack pandas- it is him, I don't necessarily know that is done yet

 

BUT- I am really interested if anyone can comment further- because of course I always want to know what the latest thinking is.

 

I have two girls with pandas. In my gut, I do think they mount a response to strep, but actually more of an overactive response, or maybe just a mixed up response- which is why pandas. For them it seems (but we will see) to have developed into a classic autoimmune issue. m One never had high titers, the other I never tested (I, actually, don't see any benefit to testing titers, and we were "lucky" enough to have positive cultures at onset). Neither has a remarkable health history- no frequent illnesses, even strep.

 

This is such a long road for us, the parents. I hate to get stuck on one idea- as I really think ALL of this is so new. I will be interested to hear responses!

[Mary M]

It could mean nothing at all to the diagnosis. Some kids do not present with elevated titers and yet still have this disease/disorder. When our dd was 7 and in extreme exacerbation her ASO and AntiDNase B levels were "undetectable". We went 4 years without an issue and now over 4 years later they are both elevated and she is in extreme esacerbation every day. I don't understand the science of it but the ASO and AntiDNAse B levels seem not to be too predictive or diagnostic for PANDAS.

[MrPGAPro]

Boy I am really new to this.... What did those tests tell us? Titers? I'm sorry, but we are verrrrrry new to this, probably more so because DD7 is doing Awesome on abx..

I hope were just not being ignorant...she has appt. with Dr on Sat.

Thanks to everyone!!

[peglem]

Boy I am really new to this.... What did those tests tell us? Titers? I'm sorry, but we are verrrrrry new to this, probably more so because DD7 is doing Awesome on abx..

I hope were just not being ignorant...she has appt. with Dr on Sat.

Thanks to everyone!!

Titers=antibodies. In the case of ASO and antiDnase, they are measuring antibodies to exotoxins produced by the strep, not antibodies to the actual bacteria. The tests can confirm a strep infection in the recent past- but negative (low) titers do not rule out a recent strep infection, because as somebody already said, some children do not produce these antibodies- even w/ a confirmed culture positive for strep (which is, of course, the best evidence of a strep infection).

 

Amy,

Now the question of why some children do not have a rise in titers despite documented strep positive cultures-per Dr. B- in my daughter's case she is not mounting an immune response to the strep, therefore her body does not produce these antibodies (the opposite of those PANDAS kids who have hyper-immunity and therefore unusually high titers). She has Selective/specific Immune Dysfunction to strep as we just learned from Dr. B last week.

 

Here's what I don't understand- if a person is immune deficient (my daughter is) and doesn't seem to make antibodies efficiently in response to strep bacteria, then why would they be able to make the antibodies that cross react w/ the basal ganglia? My (poor) understanding is that the antineuronal antibodies are antibodies against strep antigens (a normal immune response to it) that then activate receptors on basal ganglia cells.

[AmySLP]

Here's what I don't understand- if a person is immune deficient (my daughter is) and doesn't seem to make antibodies efficiently in response to strep bacteria, then why would they be able to make the antibodies that cross react w/ the basal ganglia? My (poor) understanding is that the antineuronal antibodies are antibodies against strep antigens (a normal immune response to it) that then activate receptors on basal ganglia cells.

 

 

Peglem~

THis is exactly what I've been wondering too! My daughter has had the titers drawn three times-all within months of many, many positive rapids and cultures. I wanted Dr B to explain the same to me at our next appt in July. If you don't make these antibodies, as evidenced by the low to non-detectable (my daughter last time was ASO 5, Anti-Dnase-0 (undetectable) then how/what attacks the basal ganglia.

 

DCMOM-there is currently a rather large thread on strep pneumonae, with some pretty interesting answers/explanations to all this. I don't know how this works, but it makes sense to me to some degree b/c I never undertsood why my daughter had strep 4-5 times before the age of 1 year (1st time at 8 wks old). Either she didn't get the antibodies from me (b/c I don't have them either-may explain my childhood of frequent tonsillitus and T&A) or she could not build an immune respse to them at that point either. All other markers for immunology were high, explaining her good health other than non-symptomatic strep (only PANDAS symptoms).

Edited June 18, 2010 by AmySLP

[Kayanne]

Another possibility of a negative strep titer is that the blood work must be done at a certain time interval past the infection...to give time for the antibodies to rise to a sufficient number.

 

Wasn't your daughter just diagnosed with a strep infection? How long ago was that in relation to the blood draw?

[peglem]

Peglem~

THis is exactly what I've been wondering too! My daughter has had the titers drawn three times-all within months of many, many positive rapids and cultures. I wanted Dr B to explain the same to me at our next appt in July. If you don't make these antibodies, as evidenced by the low to non-detectable (my daughter last time was ASO 5, Anti-Dnase-0 (undetectable) then how/what attacks the basal ganglia.

 

Well, the ASO and Antidnase are not the antibodies that cause PANDAS. But, if my child has antibodies to strep antigens cross reacting w/ body tissue, she must be making some antibodies to strep, right? On the other hand, she doesn't seem to make antibodies that actually attack the strep, or at least if they do attack, they don't kill it.

[dcmom]

Amy-

 

I have seen the thread on S pneumonaie. It just really doesn't have any "meat" in it. I am not saying it is not possible that this bacteria, and failing this titer test could relate to pandas- I just really havent' heard this put together in any meaningful way.

 

Our kids get pandas, and we need to get them IVIG. The docs then look for immune deficiency to help get ivig. They commonly find low s pneumonai titers- but we have no information about these titers in the general population. We (as far as I know) have no way to connect this with pandas. If someone does- I want to know. It is not that I don't believe it- but when I see parents write they have found their child mounts no response to GABHS because they failed the S pneumonaie titer test- I wonder if that is misinformation.

 

Can anyone else shed light on this?

 

Thanks!

[peglem]

Amy-

 

I have seen the thread on S pneumonaie. It just really doesn't have any "meat" in it. I am not saying it is not possible that this bacteria, and failing this titer test could relate to pandas- I just really havent' heard this put together in any meaningful way.

 

Our kids get pandas, and we need to get them IVIG. The docs then look for immune deficiency to help get ivig. They commonly find low s pneumonai titers- but we have no information about these titers in the general population. We (as far as I know) have no way to connect this with pandas. If someone does- I want to know. It is not that I don't believe it- but when I see parents write they have found their child mounts no response to GABHS because they failed the S pneumonaie titer test- I wonder if that is misinformation.

 

Can anyone else shed light on this?

 

Thanks!

I don't know if that is misinformation or not, about the strep S.pneumo connection, but I think we do have info on the s.pneumo titers in the general populaton. That's one of the reasons immunos use this to test the immune response, because it is known what the normal response should be.

 

And, 3 years ago when my daughter's immuno did this test on her (I think he was looking to prove there were no immune problems, so he wouldn't have to treat her-but that's another story)- he took a baseline measure of s.pneumo titers (she'd not had any pneumo vaccine before), then vaccinated w/ pneumovax and took another sample to compare to baseline. (there should be a fourfold rise in titers). There was almost no response. So, he decided to revaccinate and pull titers again. The second time he decided the response was strong enough and I received a message from him via his nurse- "The vaccine jumpstarted her immune system and she should have less frequent strep infections." Well, she didn't! But it sounds like HE thought there was a connection between the two.

[AmySLP]

Another possibility of a negative strep titer is that the blood work must be done at a certain time interval past the infection...to give time for the antibodies to rise to a sufficient number.

 

Wasn't your daughter just diagnosed with a strep infection? How long ago was that in relation to the blood draw?

 

 

 

No, my daughter's last postitive strep was early May. But prior to this in April 2009, she had had strep since July of 2008 that was difficult to erradicate. Overall she had strep postives rapids or cultures 6 times in 8 months, being on ABX for 7-10 days and then testing negative only to test positive a few weeks later. She had titers drawn twice during that period, the last one being in April with again no rise in titers. So it just doesn't happen for her....