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having learned the VERY hard way last year, this year, i wanted to not give too much info to school about PANDAS but rather focus on what we could do to help ds succeed in school. he's in a new charter school this year after home teaching since Oct due to poor handling of situation last year. we had IEP mtg today that went well -- good assessments scheduled. team seeming very interested in finding out what ds needs and how to help him best function.

 

we did have a medical diagnosis letter and our pysch attended the meeting. we did have medical and psych letters last year, but i think i gave too much info and was too informed and they thought they knew nothing about this and it just spiraled from there.

 

 

yesterday, i was thrilled to find an awesome quote from Swedo that sums it all up. I printed this excerpt which prints nicely on NIMH letterhead even with a selected section print. . . "Strep bacteria has evolved a kind of camouflage to evade detection by the immune system," Swedo explained. "It does this by displaying molecules on its cell wall that look nearly identical to molecules found in different tissues of the body, including the brain. Eventually, the immune system gets wise to this 'molecular mimicry,' recognizes strep as foreign, and produces antibodies against it; but because of the similarities, the antibodies sometimes react not only with the strep, but also with the mimicked molecules in the human host. Such cross-reactive 'anti-brain' antibodies can cause OCD, tics, and the other neuropsychiatric symptoms of PANDAS."

 

this is from

"Possible Causes of Sudden Onset OCD in Kids Broadened; NIH Immune-Based Treatment Study Underway " on the NIMH website. http://www.nimh.nih....broadened.shtml

 

there is also a organizational flowchart for NIHM on the website that shows who Swedo is. http://www.nimh.nih....dget/cj2007.pdf -- page 2. EDIT -- OOPS - that chart appears to be from 2007 - ? - maybe don't use it :o

 

I also gave an excerpt of the chart from the 'white paper' that delineates the 'other neuropscyh symptoms' that ds showed all of.

 

i simply said this is what we experienced in the extreme when ds had suden onset and if we see an uptick in these, he's likely entering exacerbation and we're likely to have problems.

 

 

that was it -- no rattling on about symptoms, stories, theories, treatments. i was so pleased with myself!:lol: thank you, Dr. Swedo!!!!

 

the rest of the meeting was about what they see, what they want to assess, how he's doing, how to help him.

 

 

 

 

Edited by smartyjones
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Thanks for the quotes! Those are excellent, and considering my home under my "rock" of work, school, chauffeuring, etc., I was unaware of this resource until you posted it. :lol:

 

Glad your IEP meeting went so well and the outlook is positive! Hallelujah for schools that put the kids first! :wub:

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yesterday, i was thrilled to find an awesome quote from Swedo that sums it all up. I printed this excerpt which prints nicely on NIMH letterhead even with a selected section print. . . "Strep bacteria has evolved a kind of camouflage to evade detection by the immune system," Swedo explained. "It does this by displaying molecules on its cell wall that look nearly identical to molecules found in different tissues of the body, including the brain. Eventually, the immune system gets wise to this 'molecular mimicry,' recognizes strep as foreign, and produces antibodies against it; but because of the similarities, the antibodies sometimes react not only with the strep, but also with the mimicked molecules in the human host. Such cross-reactive 'anti-brain' antibodies can cause OCD, tics, and the other neuropsychiatric symptoms of PANDAS."

 

 

 

 

good quote...I wonder what Swedo would say re what is happening when these kids start reacting to other infections (viral, other bacteria)? Is it just that these "other things" (including stress) open up the bbb and allow more molecular mimicry to take place (assuming a certain level of cross reactive antibodies are always present in the blood stream)?

 

Dr. T. doesn't think it is actually molecular mimicry that is going on (b/c so many non-strep things trigger pandas/pans)...but I haven't had time to ponder his theory.

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good quote...I wonder what Swedo would say re what is happening when these kids start reacting to other infections (viral, other bacteria)? Is it just that these "other things" (including stress) open up the bbb and allow more molecular mimicry to take place (assuming a certain level of cross reactive antibodies are always present in the blood stream)?

 

Dr. T. doesn't think it is actually molecular mimicry that is going on (b/c so many non-strep things trigger pandas/pans)...but I haven't had time to ponder his theory.

 

 

yes - i did think about that, but we do have strong strep evidence for onset, so it served my purpose. . . but i do wonder that also. esp b/c i believe ds had an exacerbation due to stress which would appear that he always has these troublesome antibodies circulating.

 

 

i just read the synopsis for Dr. T at the upcoming conference and i wasn't sure i was previously aware the alternate fever theory was in constrast to molecular mimicry.

 

EAmom -- are you going to that conference? i'd love to hear about it!

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good quote...I wonder what Swedo would say re what is happening when these kids start reacting to other infections (viral, other bacteria)? Is it just that these "other things" (including stress) open up the bbb and allow more molecular mimicry to take place (assuming a certain level of cross reactive antibodies are always present in the blood stream)?

 

Dr. T. doesn't think it is actually molecular mimicry that is going on (b/c so many non-strep things trigger pandas/pans)...but I haven't had time to ponder his theory.

 

 

yes - i did think about that, but we do have strong strep evidence for onset, so it served my purpose. . . but i do wonder that also. esp b/c i believe ds had an exacerbation due to stress which would appear that he always has these troublesome antibodies circulating.

 

 

i just read the synopsis for Dr. T at the upcoming conference and i wasn't sure i was previously aware the alternate fever theory was in constrast to molecular mimicry.

 

EAmom -- are you going to that conference? i'd love to hear about it!

Hard to keep up with all of Dr T's evolving theories on the mechanism of pandas :wacko: From his last podcast he implicated cytokines and a certain area of the brain called the TMN (control center that affects alot of other centers), he's also said histamine is a root cause and at Irvine he's going to announce the 3 genetic defects that are found in 70 - 80% PANS kids!! He thinks autoimmunity is a latent mechanism of long-standing PANS. Brilliant mind, he's throwing out all these theories to open up the discussion of the issue, if anyone can figure it all out, it's Dr T! We just have to saty tuned!

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