Slide 87:

Now, there are actually many potential immune agents in existence. We talked about this at the NIDS Board meeting and some of you have heard me present this before. Unfortunately, IVGG has been thrown at a large number of children out there. IVGG given as a bolus is basically a massive immune modulator. The trouble is, for this type of phenomena, it certainly does not in general seem to be the right idea. You’re giving a bolus; it wears off. You’re giving another bolus; it wears off. You are not evening out the system; you’re hitting it up and down. So for the vast majority of children it has not been successful. Discussed at the meeting was the fact that there may be a small group of your children that IVGG is correct for. But, if it is correct – the information was filled in from the expertise there –you would do it by an entirely different protocol than is being done with your children.

Steroids are being thrown at your children right and left. The trouble with steroids is that they shut down the immune system, and also destroy a child’s body. They are not a safe, long-term answer for any of your children.

Chemo-therapeutic agents. The NIH, as I said, is talking neuroimmune. They have a disorder called PANDAs, which is a strep-induced OCD. But, what are they thinking about is treating those children with penicillin, chemo-therapeutic agents. What I would say to all of you, again, is we’re dealing with children. We have got to creatively look at new choices and new ideas to give them a healthy brain and body, not agents that are going to hurt them.

Interferon is a potent immune modulator. It has actually not been successful in many things done, but as discussed at the NIDS Board meeting, there may be a small segment of children that it would help. But unless you identify who those children are, you’re not very likely to have success.

Immune Modulators. Kutapressin, which I presented before, is what I term an antique model – it was licensed in the late 1940’s. It’s derived from pig liver. It will never go through pure new FDA trials. The company that owns it is long past the patent on it. They’re not going to invest millions to re-license it. But thankfully, it’s legal. Thankfully many of your children are doing well with it. And it at least helps to buy some time until we can get to the new agents.

What I’m hoping we can do to change the choices medically is that by giving the right markers and the right approach to the pharmaceutical companies, we can bring into play new agents that have evolved because of HIV research and other immune research in the last few years. They are basically sitting on the shelves. They haven’t been licensed so I can’t even as a doctor electively write prescriptions for them. But, if we can get them into trials, I believe a number of them will have the ability to help the children.

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