RE: Re: PANDAS

[Guest guest]

Yes, his OCD started suddenly after a strep infection this summer. He

continued to get strep several times and the OCD symptoms worsened. He ended

up having his tonsils out (Friday) because of never ending strep and

tonsillitis. I am not sure if there are other treatments besides CBT, ERP

and meds that I should be doing. I want to make sure I am not missing

something.

There was mention in the Freeing your Child from OCD book about a subject

who had PANDAS OCD and would get blood titres and some type of IV

transfusions. I was wondering if anyone has done that?

_____

From:

[mailto: ] On Behalf Of

Sent: Sunday, November 30, 2008 10:06 PM

To:

Subject: Re: PANDAS

Hi Annie, there are some members here with kids with PANDAS. You can

also search back through the archived messages of the group for

PANDAS, should turn up a LOT. And there is probably something in the

FILES section of our group too.

Some people have had a bit of success with ongoing antibiotics for

PANDAS but I think most end up on the same medication as non-PANDAS

(SSRIs). So far as therapy, it would be the same also, CBT with

ERP.

Also, sometimes if it's PANDAS the OCD will stop or almost stop after

a few weeks. Can return with future strep exposures.

All I can think of right now, I'm sure others can tell you a lot

more. So he had strep before the OCD? Sorry, hard to remember " what

is what " with each person.

http://www.tourette <http://www.tourettesyndrome.net/pandas_overview.htm>

syndrome.net/pandas_overview.htm

http://intramural. <http://intramural.nimh.nih.gov/pdn/web.htm>

nimh.nih.gov/pdn/web.htm

>

> Does anyone have knowledge or experience on treating the PANDAS

type of OCD?

> We suspect this is what our son has but our pediatrician was

clueless about

> it and I am not sure what it would mean for his treatment options.

>

>

>

> Thanks,

>

> Annie

>

>

>

>

[Guest guest]

Hi Judy,

You are welcome.  I dug a little more, and found this information on titers that

I had saved from another parent.  I hope you find this information useful when

discussing the possibility of PANDAS with your doctor:

 

" In reading through multiple posts, it seems there is a lot of confusion about

titers and carriage of streptococcal infection. As a parent struggling to

understand the medical information, I wanted to post what I've learned thus far

and I hope it will be of use to you.

1) Titers need to be compared to a baseline. Direction is much more important

than absolute value.

Some people produce very significant antibody responses, some don't. Some have

high baselines, some don't. Since most often there isn't a test result from the

prior month to compare against, most doctors (and labs) use a measure known as

the " upper limit of normal " [uLN] as defining the baseline for ASO tests. Then

if your single sample is > 130%-150% (depends on lab) of this baseline, they

consider the test positive.

2) So this begs the question of what is the ULN for ASO? There are lots of

studies here but what is important is that the studies have a very large range.

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

Unfortunately, even in this study, there didn't seem to be a second measurement

taken within 1-2 weeks to look for rise/decline.

3) This begs the question of " what level of response consistitutes a positive?. "

Could a result of <100 still be an indication of a recent strep infection?

The answer appears to be yes, but only if you have a prior value done by the

same lab, using the same technique. Most studies show that subjects will have a

response 2-4x their baseline, this statistically could still fall within this

" normal " range depending on the individual. So again, the importance is to look

at trends and not absolute values.

4) What about falling titers? Does a high number indicate a current strep

infection?

The answer seems to be no. There is just no good study about how fast ASO titers

fall and what drives the rate of fall. Thus a single sample really gives no good

indication of direction. Most studies agree that the rise is within a week of

infection with a peak at 4 weeks, but there isn't a study of whether this peak

remains if the initial infection goes untreated. So could someone with an

untreated strep infection have a declining ASO titer? -- the answer appears to

be yes.

For example, the most recent study by Kurlan [June 2008 - Pediatrics] has one

subject that has positive throat cultures for 23 of 25 months but the ASO titers

are falling within this entire time. What does this mean? No one knows.

5) Do all strains of strep produce an ASO reponse?

The best study I've found on this is Kaplan's 2003 paper " Immune Response to

Group A streptococcal C5a Peptidase in Children: Implications for Vaccine

Development. " What this paper shows is that despite positive strep cultures on

day 1, at a subsequent visit 4 weeks later,

46% of subjects presented no ASO rise,

55% presented no Anti-DNAseB rise,

and 37% presented no rise of either ASO nor Anti-DNAseB

There also seems to be good research indicating that skin GABHS infections does

not produce ASO response despite producing Streptolysin O.

What does this mean?

Does this mean that the test was bad? That some strains don't produce the

streptolysin O protein? That some people don't mount a high immune response?

That the individual is a strep carrier? That the strep was going on for some

time and the ASO titers have already fallen? That skin GABHS infection differs

from pharangytis GABHS? The answer is that the scientific community doesn't

know. There has been no careful study of the decline rate of ASO titers and the

entire field of " strep carriers " is not at all clear.

So summarizing,

a rising ASO titer (regardless of absolute value) is an indication of GABHS

strep; however, you need a baseline to be sure it is rising.

A falling ASO titer indicates that there was strep, but no one knows when.

A high ASO titer could be anything including that the titer is falling, rising,

or just a high baseline. Statistically it is likely to be a falling titer.

Most will treat a titer of > 400 IU's as a falling titer (i.e., that there was

once a strep infection sometime in the past). But the exact time of the

infection is not known.

The interpretation of a low ASO titer is unclear. There could have been an

infection and the titer has already fallen, the baseline for the person could be

low, the individual may not respond with a strong immune response, the strain

may not produce significant amounts of streptolysin O.

One final comment, Swedo does not require high ASO titers or even rising ASO

titers to diagnose PANDAS. The titers are checked only when a positive strep

culture is not available and you are retroactively looking for an indication of

past infection. The flaw with using titers as an indication of prior strep

infection is (as I stated above) that " low " values can still be associated with

prior strep infections since the rate of ASO titer decline is not known, most

people only have a single sample, and the ASO response is variable across

individual and strep type. "

 

Warm Regards,

Peggy

Subject: Re: Re: PANDAS

To:

Date: Tuesday, December 2, 2008, 9:54 AM

Peggy,

Thank you for all of this information. My son's psychologist asked me a few

weeks ago if I ever tested him for PANDAS. I told him that I did and he did not

have it. The doctor said he was certain he did.

Hugs

Judy