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PANS/PANDAS is not unlike many (if not most) other autoimmune diseases in that it is believed to be triggered by an infection. MS, RA, Lupus, even NMDAr encephalitis - if you read about them, almost

Hi, y'all:   I know that some other folks on here have elected to participate in Dr. Madeleine Cunningham's (leading researcher from OUHSC) blood test research study. Dr. Cunningham has co-publishe

Good idea Chemar, done.

More on Lyme/PANDAS from http://www.latitudes.org/forums/index.php?showtopic=9361&page=1 (P. Mom's visit to Dr. Cunningham in OK)

 

"3. Strep is not the only cause of the neuropsychiatric symptoms. Many other viruses/bacterias can result in the same type of syndrome...but, it is still the same type of autoimmune dysfunction/problem. You won't find strep anywhere in this case.....this would be the PITANDS syndrome. This can also produce high Cam Kinase.....particularly Lyme...it produces high Cam K results. In a viral cause of symptoms, antibiotics will not help...but, steriods can be given to bring the episode under control if the episode is bad enough. Strep induced (bacteria induced) episodes should resolve/diminish with antibiotics."

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PANS/PANDAS is not unlike many (if not most) other autoimmune diseases in that it is believed to be triggered by an infection. MS, RA, Lupus, even NMDAr encephalitis - if you read about them, almost all the literature says they are believed to be triggered by an infection preceding the onset. They don't tend to stay too focued on what kind of infection (and we in the pandas world should move on as well - once we have tested for a number of common infections that can become chronic in our kids of course)

 

Strep is not the cause. It may be the trigger and other infections are as well. The cause is more complex.

 

Cunningham's tests seem to be the thing that can finally identify immunologic aberrations in our kids- proof that immune modulating therapies like Steroids and IVIG are justified in order to treat the disorder.

 

What we don't know is what other disorders or infections - like NMDA and MS, may have high Cam K activity. She has already said that a strep infection - in a healthy, normal individual raises the Cam K, but it does not got very high - but still raises it 10-30% (? can remember exactly) for the period of infection, and then goes down.

 

While there are still questions about testing, Cunningham has thousands of samples. She says that more than 50% of them are not strep related. And although she has not published any papers on her years of research (she has said she has several papers int he works), I don't believe she would open a lab based upon what she knows if her years of research does not support this being a very good screening test for anti-neuronal activity. Test that support the concept that this is disease that involves the immune system, and suffers will most likely benefit from Immune therapies.

 

It may also be of benefit in tracking the disease. I'm waiting my states approval so I can test my some again. He previously had very high numbers, that came down after IVIG. But now, things have changed so much I'm not sure we are still dealing with pans - or if he has learned behaviors or other problems that have resulted from pans for 4 years. I'll get another IVIG if I see his Cam K and antineuronals are high, but if not, we will pursue CBT/exposure therapy.

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Thanks Norcalmom! (Great explanation btw.)

 

We are in a similar boat. Our dd is not symptom free (but doing pretty good 85-90%, going to school, happy functional). There is some residual OCD which is clearly from PANDAS (but how much is "habit?"). There are other quirks, traits, anxiety which may or may not be from PANDAS. We are looking forward to repeating her Cunningham test to give us a better idea of where to direct treatment and find out where we stand vs. a few years ago.

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Oh, I have no idea about getting to see your results from the NIH. Maybe contact Paul Grant? Maybe they are holding on to the results until the paper is published? Definitely ask. Do you have any idea if they are doing before and after IVIG Cunningham labs? They did that with the first study (at least for the PEX kids, not sure about the IVIG kids).

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Then I see no reason they would not also tell you the result of the cunninhgham test. Its now a commerically availible test. Tell they you may want to take the test again and would like the information as a baseline. It seems like it might be a matter of getting the right person on the phone...

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