How Can they diagnose PiTANDS?

[Chemar]

I think you are misunderstanding me

 

 

I am saying that perhaps some kids just plainly and simply have never had strep and they they therefore do not have strep antibodies, nor have ever exibited any signs or symptoms of strep.

 

however, those same kids may have eg Lyme Disease and so have PANDAS-like symptoms and be classified PITAND, but without the strep having triggered their disorders ie triggered by another microbe

 

I am not saying that kids with low strep titres are not PANDAS but that some kids with PITANDs may not have ever had strep infection

 

ie a PITAND diagnosis can be given without any evidence of prior strep infection

Edited May 5, 2010 by Chemar

[EAMom]

I am saying that perhaps some kids just plainly and simply have never had strep and they they therefore do not have strep antibodies, nor have ever exibited any signs or symptoms of strep.

 

But if a child doesn't show "typical" strep symptoms (no sore throat/fever) and/or they are never cultured (or the strep is in a difficult to culture location, or the culture is done after the fact) and they do not get elevated strep titers....them you would never know that they had strep, even if in fact they did. Of course the other possibility is that such a child never had strep, it is just difficult to say that with 100% certainty.

 

If someone had asked me, when my PANDAS dd was 7, if she had ever had strep, I would have said (with certainty) "no". She had never had "classic" strep signs and no doctor had EVER found reason to culture her. Now I know better. But I was lucky, her culture (and her sister's as well) was still positive after 2 mo. of severe PANDAS symptoms. If we had listened to the doctors, and just checked her titers as they recommended, we never would have know that she did indeed have strep.

 

So, yes, if there is no "evidence" of strep, it might be safer to call it PITANDS, but that doesn't mean that strep wasn't the original trigger....since so many early cases of strep in PANDAS kids go undiagnosed.

Edited May 5, 2010 by EAMom

[Chemar]

we are then back to my original point that if a child had undetected strep one would surely expect at lease some antibodies, albeit that they might not be elevated

 

anyways, I really dont want to highjack this thread by going back and forth on this

 

my point was made only to suggest that just because a child has no markers whatsoever for strep, their parents should not dismiss the possibility of them having some other microbe that triggered their neuropsychiatric symptoms

 

ie that a PITAND diagnosis is still possible even if there is nothing to indicate a prior strep infection

[Buster]

Hi folks, thought I'd jump in for a moment.

 

You probably are both right.

 

PITAND doesn't require an initial streptococcal infection based on the definition from Allen and Swedo in 1994. However, they basically didn't study it and started restricting their study to anything that seemed repeatable and found that GABHS was correlated with the OCD symptoms seen.

 

What's a bit unusual about GABHS is that it produces super antigens -- these things can trigger immune reactions from T and B cells that weren't specifically targeting the antigen. Other bacterical infections can do this too. GABHS has 17+ known exotoxins -- other bacteria have a bunch of them too.

 

So what might be going on is that there is a humoral B-memory cell that is waiting around for neuronal tissue and gets activated accidentally by one of these infections and with a bit of inflammation is able to find some actual neuronal tissue and a feedback loop starts.

 

Now on the question of titers -- the study by Kurlan and Wannamaker indicates that ASO and AntiDNAseB titers fall at radically different rates in people. Some people the values will return to undetectable levels and some people will retain a background of antibodies. There is no good research on why this happens.

 

Most children under the age of 12 will have 1 strep infection every 2-3 years. yes, some will escape, but if you are in a district like ours, the notices come home almost weekly in the winter with 5-6 kids per class getting wiped out.

 

Labs have different values of "normal". For example in one study, kids not suspected of GABHS strep in the 5-10 year range, had

48% had titers below 100

6.8% had titers of 100

10.6% between 101-125

7.6% between 126-156,

22.1% between 157-195

and 4.5% in 196-244

 

 

The bottom line is that most tests cannot test for memory B-cells that would show a prior exposure to streptococcal infection. Certainly ASO and AntiDNAse B do not test this but rather whether there are active antibodies not the potential of remembered antibodies. This is why if you are checking for resistance to PREVNAR vaccines or other stuff, you have to essentially re-expose (like with a revaccine) and then check levels to see if the memory B-cells took.

 

You can't use negative ASO or AntiDNAseB to make a statement about prior strep. After an infection they can return to zero or in 33% of cases never rise in the first place.

 

Let me know if that doesn't make sense.

 

Buster

 

we are then back to my original point that if a child had undetected strep one would surely expect at lease some antibodies, albeit that they might not be elevated

 

anyways, I really dont want to highjack this thread by going back and forth on this

 

my point was made only to suggest that just because a child has no markers whatsoever for strep, their parents should not dismiss the possibility of them having some other microbe that triggered their neuropsychiatric symptoms

 

ie that a PITAND diagnosis is still possible even if there is nothing to indicate a prior strep infection

[sf_mom]

Also appears antibody responses might be strain specific.

 

The antibody response of 40 institutionalized children involved in an epidemic associated with asymptomatic pharyngeal acquisition of a group A, M-11, T-11 typeable Streptococcus was studied. Titers of antibody to streptolysin O and to deoxyribonuclease B determined in sera collected from patients within two weeks of positive throat cultures were significantly higher than those in sera of controls (P < 0.001). However, there was no rise in antibody titers in sera obtained from these patients after an interval of three weeks. Type-specific antibody to the group A Streptococcus (type M-11) was assayed in the sera of 24 patients. No detectable antibody activity was found either in the initial sera or in sera collected eight months after the epidemic. Thus, the asymptomatic nature of this epidemic could not be attributed to the presence of detectable type-specific antibody in this population at the time of the epidemic. These observations suggest that asymptomatic pharyngeal acquisition of group A Streptococcus may occur in epidemic fashion in certain populations and may not be associated with evidence of an antibody response to the streptococcal organism.

 

http://www.jstor.org/pss/30105590

[EAMom]

good point!

[Stephanie2]

Yes, we used antibiotics but after a few months my 5 yo (and now my 2 yo) developed severe gut issues which brought about worse behaviors than pandas. So we backed down to a prophylactic azith dose and we are using spiro and IVIG. My 5 yo is doing well and my 2yo is doing ok, but he still has gut bacteria (we think...waiting on test results). The decision to use spiro came from our doc who has seen amazing results with it for pandas/autism.

 

THANKS! Did you ever use antibiotics? What decided spironolactone?

 

 

This is how my sons' doc describes it. He says that the "activating" microbe is usually strep. Once the child exhibits pandas from a strep infection then the next exacerbation and all other exacerbations can be from anything that affects the immune system (allergies, viruses, bacteria, even sunburn!!). So if you had sudden onset of symptoms then you should definitely consider pandas/pitands and assume that he either has a chronic strep infection that he is not fully getting rid of or he is reacting to all immune stimulating things in his environment, at which point it is hard to pinpoint the waxing and waning nature of the disease anymore. When it progresses to that point, most ppl have to resort to things that bring down inflammation or modulate the immune system (ibuprofen, IVIG, etc... we are currently using spironolactone).

 

Stephanie

 

I am new and having trouble understanding my son's troubles. He changed dramatically six years ago after viral infection, possible strep too, and exposures to toxins. He became emotionally labile, had rages, ticks, impulsivity, loss of focus/concentration. Now he has good days and bad days, good moments and bad moments. I never feel sophisticated enough to understand why. He is so responsive to everything -- foods, chemicals, moods -- how can you parse out if it is strep related, viral related, or just autoimmune?? Is this something a specialist could figure out?

 

Thanks,

Patti

[Stephanie2]

I get the feeling that the doctors kind of consider pandas/pitand interchangable. I mean, almost anything can be considered pitand if you think about it. What about the reaction our kids get to yeast (hyperactive, silly, drunk) or the reaction that some kids get with bacteria in the gut (aggressive, mean), mycoplasma (tics) and the list goes on. The way I look at it, pandas actually falls under pitand and I don't really know why it is a distinct diagnosis. Maybe b/c it is the most studied? If you look within the autism community, they/we consider all behaviors to have a biomedical origin. pandas is just one of those biomedical origins that the DAN doctors focus on.

 

My point being that either way, whether the neuropsychiatric symptoms were originally exacerbated by strep or something else, if the brain is being attacked by antibodies then a good pandas/pitand doc will make the diagnosis based on the clinical presentation of the patient, along with relevant labwork. If it is autoimmune in nature, then immune modulation/reduction of inflammation needs to take place (along with trying to prevent further assaults to the immune system).

 

If it is not autoimmune in nature (yeast/bacteria of the gut) then those need to be treated, etc. When my son gets yeast/bacteria he needs to take diflucan or vancomycin and he does not respond to ibuprofen b/c there really is not an autoimmune attack going on, more of a release of toxins by these microbes that goes to his brain to make him crazy! I would assume this would fall under pitand but is not necessarily started by pandas/strep. In fact, in treating pandas, that is how he ends up with these other issues (chronic use of antibiotics kills the good bacteria, allowing the bad bacteria/yeast to grow). These can cause symptoms which are just as bad, if not worse than pandas.

 

Seems to me that pandas always progresses to pitand...

 

Hi folks, thought I'd jump in for a moment.

 

You probably are both right.

 

PITAND doesn't require an initial streptococcal infection based on the definition from Allen and Swedo in 1994. However, they basically didn't study it and started restricting their study to anything that seemed repeatable and found that GABHS was correlated with the OCD symptoms seen.

 

What's a bit unusual about GABHS is that it produces super antigens -- these things can trigger immune reactions from T and B cells that weren't specifically targeting the antigen. Other bacterical infections can do this too. GABHS has 17+ known exotoxins -- other bacteria have a bunch of them too.

 

So what might be going on is that there is a humoral B-memory cell that is waiting around for neuronal tissue and gets activated accidentally by one of these infections and with a bit of inflammation is able to find some actual neuronal tissue and a feedback loop starts.

 

Now on the question of titers -- the study by Kurlan and Wannamaker indicates that ASO and AntiDNAseB titers fall at radically different rates in people. Some people the values will return to undetectable levels and some people will retain a background of antibodies. There is no good research on why this happens.

 

Most children under the age of 12 will have 1 strep infection every 2-3 years. yes, some will escape, but if you are in a district like ours, the notices come home almost weekly in the winter with 5-6 kids per class getting wiped out.

 

Labs have different values of "normal". For example in one study, kids not suspected of GABHS strep in the 5-10 year range, had

48% had titers below 100

6.8% had titers of 100

10.6% between 101-125

7.6% between 126-156,

22.1% between 157-195

and 4.5% in 196-244

 

 

The bottom line is that most tests cannot test for memory B-cells that would show a prior exposure to streptococcal infection. Certainly ASO and AntiDNAse B do not test this but rather whether there are active antibodies not the potential of remembered antibodies. This is why if you are checking for resistance to PREVNAR vaccines or other stuff, you have to essentially re-expose (like with a revaccine) and then check levels to see if the memory B-cells took.

 

You can't use negative ASO or AntiDNAseB to make a statement about prior strep. After an infection they can return to zero or in 33% of cases never rise in the first place.

 

Let me know if that doesn't make sense.

 

Buster

 

we are then back to my original point that if a child had undetected strep one would surely expect at lease some antibodies, albeit that they might not be elevated

 

anyways, I really dont want to highjack this thread by going back and forth on this

 

my point was made only to suggest that just because a child has no markers whatsoever for strep, their parents should not dismiss the possibility of them having some other microbe that triggered their neuropsychiatric symptoms

 

ie that a PITAND diagnosis is still possible even if there is nothing to indicate a prior strep infection