What do the Cunningham Study categories mean?

[MichaelTampa]

Hi all,

 

I have not posted a lot on PANDAS, am currently awaiting Cunningham study results. I am 42 years old, diagnosed with TS about a year ago, but considering PANDAS. Could I really be the first adult to be in the study?

 

In any event, the thing I'm trying to clarify in my mind is, in this study, how are they classifying people into the TS or OCD or PANDAS groups? I mean, the write-up shows the average score for PANDAS and for TS and so on, and the averages and ranges are very different for each group. But, what is the criteria for being in the PANDAS group? True diagnosed strep as a child with tics? Favorable results when treated with antibiotics? I could speculate on. I think the write-up talks more like strep as a child with tics, but, I'm puzzled by the impression of reading a number of posts regarding kids that test negative for strep and their parents still feel they have PANDAS, I believe in many cases "confirmed" by this study. Not trying to cast doubt, just trying to understand. Could anyone explain their understanding?

 

Michael

[EAMom]

Hi Michael,

 

I believe the PANDAS kids in Cunningham's JNI paper http://www.pandasnetwork.org/CunninghamJNICaMKinase.pdf were the exact same group as Swedo's kids from her 1999 IVIG/PEX study http://intramural.nimh.nih.gov/pdn/pubs/pub-5.pdf .

[peglem]

I'm puzzled by the impression of reading a number of posts regarding kids that test negative for strep and their parents still feel they have PANDAS, I believe in many cases "confirmed" by this study. Not trying to cast doubt, just trying to understand. Could anyone explain their understanding?

 

Because PANDAS is caused by antibodies to strep instead of the strep itself, its possible to have missed the strep infection that triggered the antibody production. Strep does not always present with typical symptoms, so nobody may have thought to check for strep, or the strep infection may have occurred in a part of the body that is not usually checked anyway (vaginal, rectal...etc.) To further confuse the issue, the medically acceptable way to check for a prior, missed strep infection is to check the blood for presence of elevated antibody levels to exotoxins of strep( ASO, AntiDnase titers)...but, while high levels of those can confirm a prior strep infection (although impossible to say how long ago the infection occurred), normal levels do not rule out previous strep infections.

 

The Cunningham test (still a study-they will be working on data analysis over the next couple of months) is thought to measure the effect of certain strep antibodies on basal ganglia cells in the brain. As far as I know (I really hope somebody will jump in here and correct me if I'm wrong), it has not been determined if other things/antibodies/toxins could possibly have the same effect...

 

And to make things even more confusing....my daughter nearly always tests positive for strep when she's not on antibiotics (and occaisionally when she is), but seldom gets an "infection." She's considered a carrier of strep, which most doctors consider to be benign....I think they're wrong about that.

[Buster]

I'm puzzled by the impression of reading a number of posts regarding kids that test negative for strep and their parents still feel they have PANDAS

 

Hi Michael,

 

Hopefully you already got your answer, but if not, please repost.

 

The issue is not thought to be the strep bacteria, but rather the antibody produced in response to the strep bacteria. These antibodies seem to have a half-life of between 4-6 weeks from an initial exposure.

 

There may be another condition that is also auto-immune in pathogenesis, but PANDAS by its definition is a pediatric condition. It requires the onset to be before puberty.

 

Buster

[EAMom]

I should add that while the initial "trigger" which sets the wheels of PANDAS into motion is strep, subsequent exacerbations can be caused by non-strep triggers (viruses, other bacteria, vaccinations). This is from Swedo's landmark 1st 50 cases paper http://intramural.nimh.nih.gov/pdn/pubs/pub-3.pdf (which would be a good paper to read if you have basic questions about PANDAS in general):

 

Two clinical notes should be made. First, not all

symptom exacerbations were preceded by GABHS infections;

viral infections or other illnesses could also

trigger symptom exacerbations. This is in keeping with

the known models of immune responsivity—primary

responses are specific (e.g., directed against a particular

epitope on the GABHS), while secondary responses

are more generalized. Thus, the lack of evidence for a

preceding strep infection in a particular episode does

not preclude the diagnosis of PANDAS.

 

BTW...there are ADULT cases of PANDAS but to be technically considered PANDAS, symptoms must have started (onset) before puberty (by definition). However, I suppose it might be possible to have an adult-onset variant of PANDAS...but you wouldn't call it PANDAS, maybe ANDAS?

 

Did you have any PANDAS symptoms that started b-4 puberty?

[MichaelTampa]

Yes, I have had really a lot of these symptoms since childhood. Just took the time today to read the description from Dr. K's website, and perhaps the PANDAS description fits a bit better than the TS description. But, honestly, the absolute worst problem I have is sensitivity to fluorescent lights and wireless devices and then perfumes. This exacerbates everything--things perhaps thought of as PANDAS symptoms (like irritability and even rage attacks, and nightmares) and things not necessarily thought of as PANDAS or TS symptoms (like headaches, inability to concentrate, fatigue, acid reflux, diarrhea, and a much longer list of items that I am blacking out on at the moment). I see sensory sensitivity as TS triggers and as something that PANDAS kids have, and then there are MCS people (multiple chemical sensitivity) and people with TMJ (which my local TMJ doctor says I have as well). But, I haven't run into any health care provider ever that has seen this type of sensory sensitivity (fluorescent lights and wireless/cellphone/etc) to the degree I have it. So, it's like the TS/PANDAS has done a lot to explain what's going on, I still feel like I don't quite fit as close to typical even here. Is it possible a number of PANDAS kids really are this sensitive to these things, and the parents have just never noticed the correlation, because they are not looking for it and so on? I guess. Anyone here paid attention to this regarding their PANDAS kid?

 

Michael