Looking for written studies about PANDAS and low aso

[melanie]

HI

 

I need a copy of astudy or studies saying titers arent the only proof of PANDAS I am calling Cunningham today to see If I can get the tests before they close but we want to show his MDs its not just the titers

 

Thank You

 

Melanie

[EAMom]

Yes, Swedo really kind of left things a bit confused on the NIMH website. They really need to clarify that ASO/anti-dnase b can be negative in PANDAS. If you casually read the webiste, it really leaves one with the impression that these strep titers will be elevated in (all) PANDAS cases...misleading. grrrr

 

I do have a paper by Trifilletti etc. that talks about PANDAS vs. SC. There is a table (table 1) in the paper that lists the differences. Under PANDAS it says ASLO (same as ASO) common, can be negative. It says the same for anti-dnase b

 

Anyway, this is the article. http://jcn.sagepub.com/cgi/content/short/2...amp;ssource=mfc I don't think there is a free full-text version available online. (Melanie, I can e-mail you a copy of the article if you PM me your e-mail.)

 

BTW...Has anyone ever e-mailed Swedo and asked her about the ASO/anti-dnase B negativity in PANDAS? I understand that for her studies she hand-picked the PANDAS kids that did have the ASO titers. I think if we could get her to say point blank you don't need to have elevated strep titers to have PANDAS that would be great. Unfortunately, the Saving Sammy book is just perpetuating this confusion. Beth never even bothered to throat culture Sammy, and all she talks about are ASO's, as if that is the diagnostic test for PANDAS, sigh. Good for the PANDAS kids that happen to have the high titers...not so good for the others.

 

I know Buster has put out all this information which explains why ASO/anti-dnase B can be negative...but honestly, most MD's aren't going to take the time to read that. Swedo just needs to say that and clarify the website (which has lots of other issues too). In a sense, I am so grateful to Swedo, but am also irritated about the way she has left PANDAS parents hanging on treatment and diagnostics, including the bunk on the NIMH website. Okay, that is my vent.

[pixiesmommy]

I do'nt have anything for you, but the chiro we saw yesterday was totally interested in Pixie's low ASOs because we know she had an ASO titer run immediately after a strep infection and yet it showed she had not had strep- he said this was really indicative of the BBB being breached and how her body has had strep so long it does not respond appropriately with high ASO the way someone "normally" would. We think Pixie has had PANDAS or another auto-immune disorder since she was 16 days old, so that makes sense in our case.

 

I say all of this because, unfortunately, it seems like the believers are going to point out the stuff that makes sense to them and the non-believers are just going say that what happens in the test-tube is gospel.

 

I'm sorry. I am hoping you find some hope and some good doctors to work with you and help your son.

 

((hug))

Manda

[melanie]

thanks anyone else

[P_Mom]

If I am remembering correctly...the article published by Swedo (response of PANDAS to IVIG and Pex).......if you read what the values were for the children in the study in regards to ASO and AntiDNAase B titers(I think..I know for sure ASO)....it shows some were negative at time of entry into the study....yet all children were severely ill.

[melanie]

If I am remembering correctly...the article published by Swedo (response of PANDAS to IVIG and Pex).......if you read what the values were for the children in the study in regards to ASO and AntiDNAase B titers(I think..I know for sure ASO)....it shows some were negative at time of entry into the study....yet all children were severely ill.

 

where is that study where can I find it? Melanie

[P_Mom]

I'll look for it now and post the link....hold on......

[P_Mom]

http://intramural.nimh.nih.gov/pdn/pubs/pub-5.pdf

 

 

 

page 3 (I think) Under "Baseline characteristics"....read the whole thing under that heading....it is in the second column, right side. It shows some kids were negative for ASO and AntiDNAase B titer at time of study....but, severly ill, which was a criteria for entry...NOT elevated ASO, etc.

[EAMom]

Wow...good catch P. Mom. Here is the paragraph (I added the bold):

 

Throat cultures were negative at baseline in all subjects.

Titres of antistreptolysin-O were similar among the three

groups (plasma exchange: three negative, seven positive,

mean 458 [sD 229]; IVIG: five, four, mean 517 [290];

placebo: five, five, mean 350 [147]). Antistreptococcal

deoxyribonucleic B titres were also similar among the three

groups (plasma exchange: five negative, five positive, mean

452 [sD 278]; IVIG: two, seven, mean 780 [434]; placebo:

three, seven, mean 546 [391]). There was no correlation

between baseline titres and degree of treatment response for

any group, or for the study population as a whole.

 

Although the annoying thing is...it's not really clear if any of the negatives were negative for both ASO and anti-dnse or if the kids were positive for either one or the other???

 

On the other hand...high titers were not (as far as I can tell) a requirement for the study:

 

Eligibility

criteria were: a tic disorder, obsessive compulsive disorder, or both,

that met definitions in the Diagnostic and Statistical Manual of

Mental Disorders;1 7 onset of neuropsychiatric signs and symptoms

before puberty; a history of sudden onset of signs and symptoms,

or an episodic course characterised by abrupt exacerbations and

periods of partial or complete remission; evidence of and

association between streptococcal infection and onset or

exacerbation of signs and symptoms (requirements for the

PANDAS subgroup);1 0 and current exacerbation severe enough to

cause significant distress and interfere with the child’s social

functioning in at least two spheres (home, school, social relations).

[P_Mom]

Hey....thanks EAMom.

 

You are correct....there is no indication anywhere in the article that the children had to have high titers for inclusion in the study. So, where did all the hoopla about titers, and them being "PANDAS diagnostic" come from????

[peglem]

Hey....thanks EAMom.

 

You are correct....there is no indication anywhere in the article that the children had to have high titers for inclusion in the study. So, where did all the hoopla about titers, and them being "PANDAS diagnostic" come from????

I think it came from people misunderstanding...the titers were used as diagnostic criteria-but only diagnostic for strep, in the absence of a positive culture...This was overgeneralized by many people, physicians included, to mean low titers indicated no strep, which if you're not careful could be implied... I mean, if high titers prove a previous infection- then it does seem like low titers would prove the opposite.

[EAMom]

Yes, and Swedo never (that I know of) came out and clearly said, "You can have low titers and still have PANDAS". She has said that titers aren't necessary to run if you have a positive culture (as evidence of a strep infection)...but the implication might be that if those kids were blood tested, their titers should be high.

 

Apparently many physicians don't understand that:

1) 37% of kids with strep won't have a rise in either ASO/anti-dnse b (these are kids with active pharyngitis, signs of strep, positive culture, not just "carriers")

2) that ASO and anti-dnase B aren't the anti-bodies that are the problem in PANDAS...they think "autoimmune" and "antibodies" and they jump to the assumption that the 2 commonly tested strep anti-bodies are the culprits in PANDAS. From that assumption, they make the presumption that if a child is negative for ASO/anti-dnse b they must not have PANDAS

[peglem]

Yes, and Swedo never (that I know of) came out and clearly said, "You can have low titers and still have PANDAS". She has said that titers aren't necessary to run if you have a positive culture (as evidence of a strep infection)...but the implication might be that if those kids were blood tested, their titers should be high.

 

Apparently many physicians don't understand that:

1) 37% of kids with strep won't have a rise in either ASO/anti-dnse b (these are kids with active pharyngitis, signs of strep, positive culture, not just "carriers")

2) that ASO and anti-dnase B aren't the anti-bodies that are the problem in PANDAS...they think "autoimmune" and "antibodies" and they jump to the assumption that the 2 commonly tested strep anti-bodies are the culprits in PANDAS. From that assumption, they make the presumption that if a child is negative for ASO/anti-dnse b they must not have PANDAS

Swedo didn't do a study on which to base the statement that you can have low titers and still have PANDAS.

 

@ 2) above- I don't even think many doctors realize that ASO and AntiDnase are not antibodies to the strep itself, but to substances produced by strep. But it also seems to me when they have negatives titers for those 2 in the face of known, positive cultures, they'd be investigating why those titers are not being produced instead of assuming the strep must then somehow be harmless. (did they have to turn in their curiosities to get a medical license?)

[EAMom]

Swedo didn't do a study on which to base the statement that you can have low titers and still have PANDAS.

But she doesn't have to...she just needs to say it's not required for the diagnosis (can be low) to clear up the confusion!

 

 

@ 2) above- I don't even think many doctors realize that ASO and AntiDnase are not antibodies to the strep itself, but to substances produced by strep. But it also seems to me when they have negatives titers for those 2 in the face of known, positive cultures, they'd be investigating why those titers are not being produced instead of assuming the strep must then somehow be harmless. (did they have to turn in their curiosities to get a medical license?)

 

excellent point...they are anti-bodies to 2 certain substances (toxin/enzyme) produced by strep....not actually to strep itself

 

Now I got this from 1 website: When used together with the ASO titer test, more than 90% of streptococcal infections can be correctly identified. But that's not true if you look at the study (kaplan? ) buster looked at. ( BTW, the website statement doesn't have a reference (unsupported) while buster's does.)

 

Also, I understand that antibiotics (and steroids!) can lower these titers as well.

[colleenrn]

On February 20, 2009 Dr. Swedo, who diagnosed my daughter back in 2001, replied to an email I sent her and at the end of the email she said "we are in the process of updating our website". Still waiting on that update.....

 

Colleen