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Kimballot, what great questions!

 

1. Is 24.3.1 SPECIFIC to strep. That is - does 24.3.1 rise in the presence of antigens other than strep.

 

It does appear that 24.3.1 is primarily associated with GABHS; however, other superantigens can cause recruitment and activation of T-cells without having the specificity. exotoxins to GABHS are superantigens and can activate many differnet T-cells and B-cells. What's in the papers is high correlation with GABHS, but it might be high correlation with exotoxins of GABHS. The epitype of the antibody had signature very similar to GlcNAC carbohydrate on the exterior of the GABHS cell wall, so that gives some bias that this is more GABHS activated -- but it could be something else. GlcNAC is a very common carbohydrate.

 

2. If my son's blood was run on the Cunninghma test in 2010 is it possible / plausible that the rise in Cam Kinase was due to an antibody OTHER than 24.3.1. That is - if he had some other type of infection, could that have caused the rise in Cam Kinase?

Yes, very possible. While Cunningham isolated 24.3.1, she also isolated 31.1.1 and 37.2.1. There are likely a whole bunch of others. She was looking for markers but not strictly causal activation. It's really possible given the way the tests are done where they don't filter first, that another antibody (i.e., not one of the 4 she typically tests) is doing the activation.

 

Doing antibody isolation is pretty expensive. So right now she's using a combination of inhibitory ELISAs on things like lysogangliosides, D1, D2 and Tubulin to see if the combination of CaM Kinase and these 4 inbibitory tests isolate the antibody. Hope that helps,

 

Buster

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Hi Eljomom,

 

it seems there are really 2 more distinct types of pandas/pitand kids here---1 type that responds to antibiotics because it shuts down the bacteria, and the antibodies eventually die out, and the exacerbation resides. Then there is the second kid (mine) who continues to have symptoms even after the bacteria/virus is gone because now the antibodies are going after self-tissue (in the basal ganglia)

 

I think the key is the closing of the BBB in either case. Once the BBB closes it probably doesn't matter if there are anti-neuronal antibodies in the blood stream, they don't have a target and so just circulate until they die off (typically 21 days later).

 

Antibiotics don't "kill" bacteria but rather slow down bacterial growth.

 

The current theory is that there are 3 things going on:

  1. There's an abnormal reponse to an infection that creates an anti-host antibody
  2. There's then a failure of the Tregs in suppressing the anti-host antibody -- normally they suppress these things
  3. Then there's a breach of the BBB that allows the antibody to reach neuronal tissue

 

Antibiotics can help to reduce the number of antigens causing #1. Some antibiotics are anti-inflammatory and can help #3. Predinsone and IVIG are both highly anti-inflammatory and would help close the BBB (as well as suppress the antibody creation).

 

antibiotics are not going to be as helpful (other than the POSSIBILITY of them helping with inflammation,etc...)??? If so, this should guide the course of treatment, right?

 

Sort of. Most are taking antibiotics to prevent new infections and the antibody production. This is why it is called prophylactic antibiotics.

 

You are right about the anti-inflammatory nature of a number of the antibiotics. I actually think this is why azith and advil both seem to help.

 

 

Also, the Cam K being high in "normal kids" with active strep might be saying that Cam K scores are more relevant to Kid #1 described above, and once infection clears, and antibodies die off, all is good in the world.

Yes.

 

And that anti-neuronals might then be a better tool for the kids who continue to have symptoms beyond the normal "antibiotic clears illness---antibodies die off" because these auto-antibodies indicate that there is truly AUTO-IMMUNE (hence ANTI-DOPAMINE, etc.. ANTIBODIES) problem going on???

 

Yup.

 

So the million dollar question then is: What do do if your kid falls into #2?? You mentioned steroids helping if the problem is outside the BBB, but if it's across the BBB---do steroids help close it?

Yes, prednisone is highly anti-inflammatory and is shown in MS to help close the BBB.

 

 

Or do you go straight to IVIG---does that help close it?

That's a really personal decision that is best discussed with your doctor. Dr. K tends to use the steroid burst as a confirmatory test (i.e., it reminds parents what their kids were once like. It basically helps to confirm an auto-imune diseases.

 

And the 2 million dollar question is: do you take these extreme measures if your kid is still functioning?

Very hard to say. IVIG is a blood product and while generally thought to be quite safe there are complications that could occur. Plasmapheresis has good safety record and is quite effective for acute treatment of auto-immune issues; however, you are putting in a central line that has it's own issues too. Personally we wouldn't have gone to IVIG if the very scary anorexia hadn't returned.

 

 

Which leads me to the 3 million dollar question---does IVIG really work and "cure"?

 

IVIG does seem to work for kids who have strong confirmation of auto-immune disease (i.e., symptoms remit on a prednisone burst, or onset was extremely rapid and severe). IVIG was uneffective for patients with chronic tics (i.e., were not having episodic course). The decision to use ivig is a very tough time. I can tell you it helped our daughter, but we too lay awake nights thinking about the pro/cons.

 

Wishing you the best,

 

Buster

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