different perspective

In lots of reading, I think no one really understands these illnesses–there are just occassional beams of light. It also seems that a lot of the problem is that this is a syndrome meaning a collection of symptoms in different people that appear sometimes to be similar but may have a very different cause. It is hard to separate out the parts to understand the cause when it is as complex as this as Mark so elegantly said. Maybe one relevant feature to why Kevie improved so much is that there seems to be a component that is antibody mediated (in which antibodies made by the person in “error” cause problems) and a compenent of the damage that is due to physical damage to the insulation (myelin) of the nerves. The rapid and severe downturn of GBS is because of the sudden appearance of antibodies. The residuals seems to be more likely from the damage that was done to the nerves and happens long after the abnormal antibodies seem to have settled down. CIDP seems characterized by progressive damage and that much of this damage is of the more permanent physical type, I am guessing from how it shows. To make it even harder, the two processes are likely not separate, but linked. I wish we understood these illnesses and how to better help different people. What I do think is most important for Kevie is that the IV IgG did work so well for him. This means that a lot of the damage is still due to antibodies and that this can be helped. No one knows exactly how IgG infusions work, but one thing they do is flood the body with immunoglobulin. If there is so much immunoglobulin to a lot of things, there is less specific binding. This is a fast process to change because antibodies bind and release and bind and release. [B][/B] If there is less specific binding, there is less damage accumulated. The other way to look at his fast response is not that he does not need the immunoglobulin, but that he does. It works for him; it makes a difference and a dramatic one. This may mean/makes sense that reducing the amount of production of the abnormal immunoglobulin he makes (by shutting down his total immunoglobulin production by flooding the system with given immunoglobulin) could really help him because his body is really sensitive to this abnormal immunoglobulin. Let me know if this does not make sense and I will try again.

I also know that illnesses in children as often not the same as in adults. This is a special challenge for very rare illnesses like GBS or CIDP. I also know that children are especially amazing and that they go and go and go until they cannot go anymore. Adults tend to gripe a lot and quit earlier and tolerate much less. Very often I see a child suddenly get worse and rapidly get better because they are so strong. It is a straw that breaks their camels back and even removing a small part of the problem (a straw) allows them to courageously march on in life.

Even though I would not want to be a child again in this age, I wish I had a child’s body!!
With Hope for cure of these illnesses (and understanding).